Celiac Testing

[Rachel--24]

Rachel--

Are you an artist or around an arts studio? I ask because many of these metals are used in paint pigments (like the cadmium yellow) and metalurgy for casting and the like. Stained glass workers use lead and coppers. And then there is the radioactive stuff (the girls who painted glow-in-the-dark watch dials used to get cancer from the paint).

Nope....definately not an artist. I dont think I have an ounce of "artsiness" in me! Seriously, if you saw my attempts at drawing you would know this to be true!

I got mercury toxic from my fillings and my ability to detox became compromised. Thats what happens when we are exposed to enough mercury. For some it might only take a little bit to start casuing significant problems...and others might be able to handle alot of exposure before they are affected. Its toxic for everyone though....no one is "immune" to the effects of mercury.

Anyways, we are all exposed to all of these toxic metals but when detoxification is impaired they will accumulate in the body. Mercury is the one which tends to "trap" all other metals in the body. Mercury has the ability to create alot of dysfunction in the body....so *everything* else will start to build up.

When mercury is not an issue the body is better able to eliminate these other metals and toxins. When mercury comes out all of these other things can actually come out on their own....without any treatment. Mercury is the one that allows for everything else to build up to toxic levels.

The only reason my copper is high is because of the mercury. Its not because I was exposed to high levels of copper from an outside source. Its because mercury interferes with copper metabolism. We need copper...its a cofactor for many enzymes. Mercury can block copper (or any mineral) so that it cant get into the cells...it cant get to where it needs to go. Because of that it will accumulate in the body and then the body's overall toxicity is increased.

Usually people with this problem have copper deficiency...despite the fact that copper stores are high. Even though the copper is in the body is "biounavailable" (meaning its not being utilized)...all its doing is building up and getting stored in the tissue.

Everyone with mercury toxicity is going to have alot of other toxins in the body as well. Thats how mercury poisons us....by interfering with how the body would normally function. It creates a situation of impaired mineral transport and it inhibits/blocks enzyme systems which are critical in maintaing health....everything goes downhill from there....any part of the body can be affected.

[pele]

I posted this on another section in a thread but the realisation of it hit me so hard I wanted to see others' take on the subject.

I keep seeing threads from ones who are not sure if they are Celiac or not and yes, it is VERY confusing. This is my observation.

. How do they know? The testing is only in its infancy and is far from definitive. We already know that a huge amount of Celiacs get missed.

Perhaps they do actually already have the definitive tests but just haven't twigged it yet!

Ali

I've been thinking about your comments since yesterday and I think you make a lot of sense, especially when you say that the so-called normal range for antibody tests may well indicate disease. I remember reading somewhere that conventional medicine has pretty much decided to disregard postive anti-gliadin results because so many people have the antibodies and they can't all have gluten issues!!

Also, research on untreated, know celiacs (who have passed the "gold-standard" biopsy) shows that blood panels have a high rate of false negatives. So to come up with that one in 133 figure, did they biopsy folks with negative blood work, or only those with positive blood work? In other words, how many celiacs were missed in those one in 133 studies?

While we are on the subject, it drives me crazy to see people gobbling up gluten even though it is obvious they are gluten intolerant!! I may start a new thread on that topic someday.

[AliB]

So what would happen to the world economy if everyone stopped eating wheat?

Hiya. Hey, look around you - the World is managing a pretty good job of collapsing on its own! If they carry on growing and feeding the world wheat and gluten grains, at this rate there won't be anyone left to worry about the economy!

I've been thinking about your comments since yesterday and I think you make a lot of sense, especially when you say that the so-called normal range for antibody tests may well indicate disease. I remember reading somewhere that conventional medicine has pretty much decided to disregard postive anti-gliadin results because so many people have the antibodies and they can't all have gluten issues!!

When you look at antibody testing for virtually any other disease, the presence of even the smallest amount of antibodies is an indicator that you have that disease. How can they assume that doesn't apply to Celiac? If someone showed antibodies to some kind of Cancer, would they turn round and say you haven't got it because your antibody level is too low? What crackpot reasoning is behind that?

It would be interesting to know, if they pulled all the gluten-intolerant 'non-celiacs' into the pot what the actual figure would be.

[home-based-mom]

So what would happen to the world economy if everyone stopped eating wheat?

The entire medical and pharmaceutical industries would need to be totally overhauled?

[Sailing Girl]

When you look at antibody testing for virtually any other disease, the presence of even the smallest amount of antibodies is an indicator that you have that disease. How can they assume that doesn't apply to Celiac? If someone showed antibodies to some kind of Cancer, would they turn round and say you haven't got it because your antibody level is too low? What crackpot reasoning is behind that?

It would be interesting to know, if they pulled all the gluten-intolerant 'non-celiacs' into the pot what the actual figure would be.

I would love to know the average and the low antibody levels of those who test negative. For example, does anyone ever have *zero* antibodies to gluten?

And what ever happened to the rectal challenge test for diagnosing celiac? I read somewhere that they had discontinued using it because it was diagnosing too many people, and of course *all* those people couldn't *really* be gluten-intolerant/celiac!

When I look around, gluten intolerance (and carb intolerance) seems to be about 80% to 90% -- I have a hard time thinking of a friend/family member who *wouldn't* benefit from a gluten-free diet.

[Rachel--24]

Hiya. Hey, look around you - the World is managing a pretty good job of collapsing on its own!

Seriously!!

When you look at antibody testing for virtually any other disease, the presence of even the smallest amount of antibodies is an indicator that you have that disease.

Actually this is not true. The majority of us will have antibodies for diseases which we dont actually have. Most people are exposed to HHV-6 during the first couple years of life. You can test positive for those antibodies for the rest of your life but it doesnt mean that you have the disease.

Same with Lyme...you can have an exposure and yet not need any treatment because the infection is not active....even if you have antibodies being produced. People with Lyme can also continue to have antibodies long after they've been successfully treated for the disease.

This is true of most infectious diseases.

The immune system will produce antibodies to anything that is considered to be "foreign". The immune system will produce antibodies to attack and eliminate anything that it does not recognize as belonging to "self".

We can all have different antibodies to different things and at different times. Suppose someone takes a bunch of antibiotics which then triggers a yeast overgrowth...suppose they have a temporary leaky gut situation which allows gluten and other foods to enter the bloodstream. Boom...you're gonna see some antigliadin antibodies...even if the situation was only temporary.

As we know leaky gut is a major contributer to chronic illness nowadays and it can be caused by a multitude of things....from antibiotics, alcohol, chemicals, preservatives, food coloring, stress, enzyme deficiencies, NSAIDS, caffeine, parasites, yeast, bacteria, mycotoxins, birth control, corticosteroids, heavy metals...to name a few.

People with leaky gut are going to have *some* antibodies to gluten...that goes without saying. It doesnt necessarily mean they have Celiac...or that they will EVER have Celiac. It means that the gut is permeable and undigested food proteins are entering the bloodstream. In other words gluten is entering a part of the body in which it does not belong....so the immune system will attack it because thats what the immune system does.

That means that there is now an intolerance to gluten...but how can we call it Celiac for every person with antibodies?? If they have a parasite infection which caused the gut to become permeable...resulting in undigested gluten entering the bloodstream...how can we call that Celiac?? It has nothing to do with Celiac and it may be that they are reacting to gluten for some other reason entirely. The presence of antibodies may mean they *were* reacting to gluten in the past.

Leaky gut doesnt have to be a chronic condition (although it often is). A person's gut can become more permeable at various time in their life....while they are under stress, if there is infection, if they are taking a certain medication, or if they are on birth control, etc. etc. Anyone can be susceptible to intestinal permeability and at any time....especially when we're consuming so many foods that are loaded with chemicals which are very damaging to the gut.

Of course food allergies are also a factor in the development of leaky gut. Even if not the cause they can prevent the gut from healing due to constant inflammation.

Not *every* person who has antibodies to gluten is going to develop Celiac. I dont see how that would be even remotely possible. There is an endless amount of possibilities for antigliadin antibodies....most of them having nothing to do with Celiac.

Also, if a person doesnt have severe problems and is just prone to leaky gut under stress or whatever...there may be times that the immune system is attacking gluten....and then there may be times when that is not ocurring at all. The antibodies might always be there at a low level...because there was a PAST exposure.

With so many contributers to leaky gut I think its pretty far fetched to think every person with *any* amount of antibodies has Celiac Disease.

When I look around, gluten intolerance (and carb intolerance) seems to be about 80% to 90% -- I have a hard time thinking of a friend/family member who *wouldn't* benefit from a gluten-free diet.

I'm sure most of us would benefit from a gluten-free diet.....especially since most of us dont have the greatest intestinal health to begin with. We're getting plenty of damage from food chemicals and antibiotics alone. Food dyes by themselves can be enough to compromise intestinal health. We are doing plenty to make sure that gluten becomes a bigger and bigger problem each day.

[Rachel--24]

Ok...heres some info. about Leaky Gut which is the same as what I just posted but with more detail.

When the gut is injured in this way, any food eaten may be a candidate to be insufficiently digested and absorbed leading to food intolerances. If you find you are sensitive to a few foods, remove those, then later notice some previously tolerated foods are now causing problems, consider a leaky gut. The core issue may not be the foods you are eating, but simply that digestion is poor and the gut injured, so anything eaten (and eaten frequently) may become problematic.

What Causes Leaky Gut?

Anyone can develop a leaky gut at any time in their lives. Several factors can lead to leaky gut, either occurring individually or working together. Any chemical or physical activity that stimulates the pores in the intestines and keeps them open for too long can lead to increased permeability. Some common sources follow.

Yeast

[Lizz7711]

Hi Rachel,

Thanks so much for all the information! The chelator was DMSA. Why is it that you can't do chelation while you still have fillings? I would think it would help to lower the amount of mercury in your body at least somewhat. When i'm ready i'll do the research to find a good dentist to do it the right way. I'm almost scared and thinking maybe it's best to leave them in, since the mercury emitted is at a low level that, while I know it is still hurting me, is probaly nothing compared to what will happen when I get them removed. But on the other hand, I guess I should try to do it because eventualy they will all need crowns i'm sure.

The only metals that were high with that urine provocation test was mercury, lead, and barium. The barium was really high, and I have no idea why, i've never had a barium enema or anything!

What hair analysis did you do? i've read so many mixed things about the value of hair analysis i'm not sure it's worth it. One thing I heard is that the levels could be higher in the hair because your body is in process of getting rid of that substance. any thoughts?

thanks again,

Liz

Usually what you're seeing in a provocation test is only a tiny fraction of whats actually stored in the body. I'm not sure which chealtor was used for your challenge but each one has a strong affinity for certain metals and will pull those out first. EDTA is used primarily to treat lead poisoning but its a "weak" chelator for mercury. If you use EDTA then you might see higher levels of lead then you would if you were using a chelator with a stronger attraction for another metal.

Do you know which chelator was used?

I use DMPS which has a strong attraction for mercury but an even higher affinity for copper and zinc. I have to watch those levels and supplement as needed. I dont supplement copper since I actually have toxic copper levels right now.

I have not yet seen my mercury levels rise out of the reference range. The only one which has been off the charts is copper and when that comes down we are hoping to see more of the mercury coming out.

My Dr.'s say that usually the first challenges are low...it can take awhile for the mercury to start showing up in higher levels. In the end results would look like a bellcurve....it might take several treatments until you see it start to rise and then eventually it comes back down again.

Certain people have more difficulty excreting mercury (common with autistic children) so it takes even longer and certain genetic weaknesses or deficiencies may have to be addressed before they are able to start dumping out the mercury.

You cant do any type of chelation with filings still in place and no Dr. should ever be attempting that but if you mean after you've removed the fillings...then yes. Removing the fillings only removes the source of exposure but you still have to address whats been stored in the body for years...so chelation is actually necessary if you are wanting to get rid of the mercury that may be causing you health problems.

The best way to go about getting them removed is to find a biological dentist in your area who will remove them safely. Never let anyone take them out who does not follow a protocol for safety....this includes special equipment which sucks the mercury vapor from the room to minimize your exposure. If a dentist isnt doing this he his putting you and himself at risk.

Thats the most important part of the removal process because if not removed correctly you can end up sicker from high exposure to mercury...which is what happened to me because I didnt know anything about it at the time. I didnt even know the fillings had mercury in them.

Its better to get them out slowly.....but not too slowly. If a person reaches their threshold and becomes very toxic the removals can become difficult because the immune system takes a big hit each time....even if you are having them removed correctly some exposure is inevitable. Some people end up too sick to handle the removal process. Its better to do it while your still not having alot of problems and your immune system isnt totally knocked down by mercury or other things.

After each removal there are supplements you can take to help your body eliminate any mercury you were exposed to. If you dont do anything then after a short period of time the mercury gets stored somewhere and is no longer circulating where it can be more easily eliminated.

For all the stuff thats stored away you need a chelator to get that out....but that is not until way later when you've gotten all of the fillings removed.

These are all of the toxic metals which have shown up in every provocation test I've had so far

Antimony (This showed up in my hair analysis)

Arsenic

Cadmium (this also showed up elevated in my hair analysis)

Lead

Mercury

Nickel

Thallium

Tin

Tungsten

Then theres the copper which is an essential element but if the levels are too high it becomes toxic. I have copper more than 4 times the reference range....it was off the charts.

Talk about synergy!!

[Lizz7711]

Why does Enterolab find antigliadin antibodies in the vast majority of those who are tested? Its definately not because *everyone* has Celiac...many (including myself) are not genetically susceptible. I'm betting that most (if not all) of these cases of non-celiac gluten sensitivity are a direct result of intestinal permeability.

I know I've said this before but I do feel very strongly that when Enterolab results are positive and all other tests for Celiac are negative (including gene testing) what they are actually diagnosing is Leaky Gut Syndrome...and a symptom of that condition is food intolerance (especially gluten/casein).

Isnt it very possible that these people have leaky gut...caused by something other than Celiac??

It makes sense to me. That would explain why so many of the non-celiacs continue to develop food intolerance and continue to suffer symptoms...even after gluten-free.

I'm sure we can go ahead and consider ALL gluten intolerance Celiac...or "pre-Celiac"....even if tests dont confirm it and even if we dont carry the necessary genes. However, in the end I dont see how that would be useful for those who dont actually have the disease. I can only speak for myself but when it comes to diseases (of any kind) I dont want to make assumptions.....especially when the diagnosis/treatment doesnt necessarily "fix" the problem.

I think theere is a chance that you are right on about the leaky gut being the main issue. But I also think it's possible that they just haven't really identified all the genes connected with celiac....or they have limited the term "celiac" too narrowly. Or they need to just officially have a medical diagnosis of "gluten sensitivity" of which one manifestation is the disease of celiac.

Anyway, I personally have DQ2 and DQ1, my daughter has DQ1,3, and my dad has DQ1,3. None of us have digestive issues or malabsorption. My dad (76 )has no symptoms other than that he's had nerve pain for a year since having shingles....he just got the enterolab results back which were positive so he's going to try gluten,casein free diet. I'm quite sure my daughter has leaky gut, and me too...because our reactiosn to gluten tend to be behaviour, mood, irritability, which to me means the molecules are crossing the blood-brain barrier. Does that make sense to you? I just recently bought "Digestive Wellness" by Liz Lipski and am hoping to work on healing our leaky guts! It would be nice if through healing that problem, if my daughter could eventually tolerate gluten. With your theory, do you think that's possible for those without classic celiac disease?

Liz

[Rachel--24]

Hi Rachel,

Thanks so much for all the information! The chelator was DMSA. Why is it that you can't do chelation while you still have fillings? I would think it would help to lower the amount of mercury in your body at least somewhat.

No...it doesnt work that way. Chemical chelators have a strong attraction for metals...this is their purpose. If a person still has fillings in place I dont know of any Dr. who would start chelation therapy until they are removed. The ones that do this are the ones that are putting the patient at great risk.

The rule is "First do no harm"...You have to remove the source of mercury before you can address what is accumulated in the body. You cant continue to poison yourself at the same time that you're trying to clear mercury from the body.

Strong chelators can mobilize significant amounts of mercury from the surface of the fillings...this can rapidly increase the mercury burden in the body. You would not be lowering the amount of mercury in your body....you would be increasing it. The chelator will likely mobilize more than it will actually excrete...so you will have an increase of mercury in your system because the chelator will pull mercury from the fillings.

The proper way to go about it is to remove the fillings first...only then can you address what is in the body. The kidneys tend to accumulate the highest amounts of mercury. If the excretory organs contain high levels of mercury and the total body burden remains high...you cant start pulling even more mercury into the system without having problems from doing that. In other words...you would be bringing more mercury into areas which are already burdened and you would be increasing the toxicity in those body parts.

When the source of mercury is safely removed the chelator is addressing whats in the body. Its not a short process but little by little the body burden is lowered. There are certain ways to go about it. You dont try to chelate mercury from the brain until everything else has been addressed....because if the load is still high elsewhere there is a good chance some mercury will get redistributed back into the brain.

The body stores mercury so that there is some "balance"....so as you get rid of it the body will "shift" some of the burden to areas which have a lesser burden in order to keep balance. First extracellular mercury is removed from the body and then later on intracellular mercury will come out...the whole time the body is trying to keep a balance.

If you pull mercury from the wrong areas early on in treatment and the "exit routes" have not been cleared....the mercury does not leave safely....it gets redistributed causing more damage. Basically that means if there is still a heavy burden in your tissue and in your organs....you cant be mobilizing mercury from other areas and expect it to leave the body if the roadways are still blocked.

Thats why you cant attempt chelation until fillings are removed. The purpose is to remove whats already in the body....not to add to it by pulling even greater amounts from the fillings.

Hope that makes sense.

When i'm ready i'll do the research to find a good dentist to do it the right way. I'm almost scared and thinking maybe it's best to leave them in, since the mercury emitted is at a low level that, while I know it is still hurting me, is probaly nothing compared to what will happen when I get them removed. But on the other hand, I guess I should try to do it because eventualy they will all need crowns i'm sure.

Its only safer to leave them in when the removal process isnt going to be done properly. If its done the way that it should be done....with all safety precautions in place....its much better to have them removed. They should be removed in installments rather than all at once and supplements should be taken following each set of removals to support the immune system and to help the body eliminate whatever mercury it was exposed to during the removals.

So in the end its much more harmful to leave them in. The amount of vapor released from the fillings is not considered to be low. It exceeds what is considered to be the "safe" limit.....although mercury has never been proven to be safe at ANY level.

mercury continually leaches from amalgam fillings at a rate of about 10-50 times the safe limit (0.28 microgram/day) set by the US Public Health Service.

Have you seen this video?

What hair analysis did you do? i've read so many mixed things about the value of hair analysis i'm not sure it's worth it. One thing I heard is that the levels could be higher in the hair because your body is in process of getting rid of that substance. any thoughts?

I did my hair analysis about 4 years ago....just some random lab I found online. I'm now more familiar with the various labs and if I ever retest I would use Doctor's Data.

I think the hair analysis is very useful....but only if you know how to interpret the results.

Mercury typically doesnt show up elevated in the hair analysis. Only when the exposure is very recent will you see some in the hair. Mercury only stays in the blood for a short time before its stored away...so its not usually coming out in the hair unless theres significant amount in the blood (from recent exposure) and the person can excrete it easily.

Usually its the people who have the most difficulty excreting it who are the most toxic. An example is autistic kids...they have very little to no mercury coming out in various tests...while the healthy kids (who were exposed to the same amounts of mercury) have more mercury showing up. Its because they are more capable of eliminating it...whereas the autistic kids are not letting go of it.

To determine whether or not mercury is a problem with a hair analysis you have to look at the essential mineral profile. That will give you a good idea as to whether or not mercury is an issue.

Heres an explanation.

THIS IS IMPORTANT: A PERSON WHO IS MERCURY TOXIC will usually (in most cases) have a NORMAL reading for mercury on tests of hair or blood or urine or feces. You cannot go by that. The most recent edition of many medical textbooks tell physicians that mercury poisoning cannot be ruled out based on the urine or blood level of mercury. This is also true for hair levels of mercury. Only about 1 poisoned person in 10 shows up with a high level of mercury on these tests. The other 9 poisoned people have normal readings for mercury.

We can look for what mercury DOES: impaired "mineral transport"

Mercury usually interferes with the body's ability to use, process, and store minerals. Regular minerals: stuff like calcium, magnesium and sodium. (On a hair test, these are called "essential elements".) While this is a very bad thing in terms of health effects, it is "helpful" for the purpose of determining mercury poisoning, because it is a pretty predictable result. This is exactly what the "counting rules" look for: seriously messed up minerals.

To be just slightly more technical about it, mercury poisoning usually causes impaired "mineral transport". Mineral transport is the ability of cells to pull minerals into themselves and pump minerals out of themselves selectively.

If mineral transport is normal then someone with too much mercury will have high hair mercury levels. This happens with about 1 person in 10 who have a mercury problem. This person will have a HIGH reading for mercury. In this case, it is easy to see they have a problem with mercury. These people have normal mineral transport, and can move mercury from the large pool in the body into the hair.

For the other 9 people who are mercury toxic, it is harder to figure out if they have a problem or not. The normal level of mercury present in their hair could mean they don't have much mercury in their body (they are okay), or it could mean they have impaired mineral transport due to mercury poisoning, and that is why there is little mercury in their hair.

Since mercury impairs mineral transport, examining hair for the level of many minerals lets us determine if mercury has left its signature in the hair's biochemistry even if the mercury itself doesn't show up.

There is alot more detail here: Open Original Shared Link

[Rachel--24]

I think theere is a chance that you are right on about the leaky gut being the main issue. But I also think it's possible that they just haven't really identified all the genes connected with celiac....or they have limited the term "celiac" too narrowly. Or they need to just officially have a medical diagnosis of "gluten sensitivity" of which one manifestation is the disease of celiac.

If gluten sensitivity is a "symptom" or a "consequence" of another problem ocurring in body (and it often is) I dont understand how we would benefit from an official diagnosis of gluten sensitivity?? Most of us who are non-celiac are sensitive to many foods.....would it make sense to have a medical diagnosis of "casein sensitivity....or "soy sensitivity" or "yeast sensitivity", or "red dye 40 sensitivity", etc. etc?? Where would we draw the line??

At least 97% of diagnosed Celiacs have one or both of the two main genes. I agree that they dont know all of the genes...but for the most part they have the genetic part figured out pretty well. We dont have a ton of people testing positive for Celiac who dont carry the known genes. However, we DO have a ton of people that are sensitive to gluten WITHOUT these genes and who DO NOT test positive for Celiac.

The disease results in an autoimmune response which causes destruction of the villi. As with all autoimmune diseases there must be a genetic susceptibility.

Of course every single one of us who is sensitive to gluten (for whatever reason) can call this a "manifestation of Celiac". Personally, I think its highly unlikely that there is an explosion of Celiacs....who dont actually test positive for the disease and who do not actually carry the necessary genes.

I think in order to have an official diagnosis of gluten sensitivity which is considered to be a "manifestation of Celiac"....they would have to determine that there actually IS an autoimmune response occuring. They would have to determine that the autoimmune response is occuring as a direct result of gluten...and that the autoimmune response...as well as the resulting symptoms are resolved completely with the removal of gluten alone.

Right now I see Leaky Gut as a more likely cause.....otherwise there would be some evidence linking ALL of these cases of sensitivity to Celiac....and there just isnt any evidence of that. I dont think there will EVER be any evidence of that because I dont think they are linked. They are two seperate things. One is a life-long autoimmune disease with a strong genetic link....and the other is a sensitivity caused by other issues.

When a person eliminates gluten...then later on has to remove dairy...only to find out that a couple months later they need to remove soy...and then its corn, eggs, etc. etc....that is a result of leaky gut and it doesnt resolve itself until the cause is determined and treated.

Just because gluten is one of the foods the immune system has begun to attack...does not mean that this is some kind of "subset" of Celiac Disease. Its this type of thinking that leads to SO many people asking the question "Why am I not getting better?" Is it really that the doctors have limited the term "Celiac" too narrowly....or is it possible that WE are thinking too narrowly in believing that every person who is sensitive to gluten has Celiac (in some form or another)??

If following the diet is a "cure" for Celiac.....then it should also be a "cure" for other "manifestations" of Celiac. That means that the diet should resolve all symptoms of disease as it does in cases of Celiac (where there are no additional health problems).

If this was the case we would see many more people with success stories and alot les "Why am I still having symptoms?" Most of these people are self-diagnosing based on Enterolab results and/or initial response to diet. If leaky gut is the problem of course there would be initial improvement on the diet....anytime we remove a food which the immune system is reacting to we will feel better....but this isnt a "cure".

I'm quite sure my daughter has leaky gut, and me too...because our reactiosn to gluten tend to be behaviour, mood, irritability, which to me means the molecules are crossing the blood-brain barrier. Does that make sense to you??

Yes, it does make sense and I agree. I dont consider this to be a "one or the other" type diagnosis though. Many people who do have Celiac can also have Leaky Gut as well....and this might not resolve while on the diet if there are other contributers. However, I dont think that those who are not genetically susceptible to Celiac will somehow "get" Celiac....and they are more likely dealing with Leaky Gut.

I just recently bought "Digestive Wellness" by Liz Lipski and am hoping to work on healing our leaky guts! It would be nice if through healing that problem, if my daughter could eventually tolerate gluten. With your theory, do you think that's possible for those without classic celiac disease

Well its not really my theory. There are lots of people who are not Celiac...and with proper treatment and intervention can now tolerate gluten. Even autistic kids who once had very severe symptoms from gluten and casein have recovered to the point that they no longer require the diet.

So yes, its very possible. If the intolerance is a result of something other than celiac its very possible that the body can heal once the other issues are addressed.

The problem is that its NOT easy to heal leaky gut. I dont think that most people can correct this situation on their own without knowing all of the factors involved...and it can be very complicated...not as simple as eliminating some foods and taking some supplements. At least not for most chronic cases.

This is another situation where mercury is a huge factor and without treating it the gut does not heal. For one thing mercury is anti-bacterial...it acts as an antibiotic. We all know that taking antibiotics can lead to dysbiosis by killing off the beneficial bacteria and upsetting the balance....allowing for pathogens (such as yeast) to take hold.

Mercury from fillings has the same effect on the gut flora. It upsets the balance which leads to an unhealthy intestinal environment...promoting yeast overgrowth and the development of leaky gut. The effects that mercury has on intestinal health is well documented.

I think unless someone does alot of work to correct the things that have led to these problems in the first place...the symptoms remain...and one of those symptoms can be gluten intolerance. I think that gluten and any other problematic foods should be avoided until the underlying issues are addressed and health is restored. Of course in the cases of Celiac gluten should always be avoided.

[Lizz7711]

If gluten sensitivity is a "symptom" or a "consequence" of another problem ocurring in body (and it often is) I dont understand how we would benefit from an official diagnosis of gluten sensitivity?? Most of us who are non-celiac are sensitive to many foods.....would it make sense to have a medical diagnosis of "casein sensitivity....or "soy sensitivity" or "yeast sensitivity", or "red dye 40 sensitivity", etc. etc?? Where would we draw the line??

Good point. But aren't there alot of people who DO just tend to have a problem with gluten and don't have the celiac genes? I know there are plenty of people who have multiple issues, but I guess I was under the impression that many people are having issues like osteoporosis or nerve issues etc, who do not have the celiac genes, but for whom gluten is attacking different body systems, ie. autoimmune reaction, but without villi damage. Also, doens't elevated tTg indicate autoimmune reaction? Guess i'm just confused on some of these issues.

Of course every single one of us who is sensitive to gluten (for whatever reason) can call this a "manifestation of Celiac".

Actually, I was saying that celiac is one manifestation of gluten sensitivity, where gluten sensitivitiy is the tip of the iceberg and all the various forms of it underneath, including celiac, non-celiac etc.

If following the diet is a "cure" for Celiac.....then it should also be a "cure" for other "manifestations" of Celiac. That means that the diet should resolve all symptoms of disease as it does in cases of Celiac (where there are no additional health problems).

If this was the case we would see many more people with success stories and alot les "Why am I still having symptoms?" Most of these people are self-diagnosing based on Enterolab results and/or initial response to diet. If leaky gut is the problem of course there would be initial improvement on the diet....anytime we remove a food which the immune system is reacting to we will feel better....but this isnt a "cure".

Well, on this point, we have to remember that the people that do feel better, don't hang around on these forums for long...so judging this based on what you see here may not be representative of what's really going on.

Yes, it does make sense and I agree. I dont consider this to be a "one or the other" type diagnosis though. Many people who do have Celiac can also have Leaky Gut as well....and this might not resolve while on the diet if there are other contributers. However, I dont think that those who are not genetically susceptible to Celiac will somehow "get" Celiac....and they are more likely dealing with Leaky Gut.

Yes, so in my case while I do have celiac, I also have leaky gut whereas my daughter and my dad MAY just have leaky gut issues primarily. I can see that...although neither have malabsorption, and both had elevated tTg antibodies as well.

take care,

Liz

So yes, its very possible. If the intolerance is a result of something other than celiac its very possible that the body can heal once the other issues are addressed.

This would be wonderful for my 9 year old who is so sad about this new diet! Since she doen'st have the celiac gene, perhaps one day she'll be able to tolerate the gluten and casein. She probably inherited some mercury from me through pregnancy. I also have adrenal fatigue and hypothyroid so that didn't help her. She's really sensitive to food dyes and MSG/aspartame as well.

[Lizz7711]

Rachel,

Thanks for all the great info and links, I will certainly look into all of it...I appreciate the time you took to write it all down! I need to print it all. I think you said somehwere you may start a "mercury" thread, that would be great.

I had heard of Doctor's Data so i'll go with them, I'm interested in having my dad and my daughter tested by them more for a look at their mineral profile. I may try to get my dad to do a heavy metal urine provocation like I did, i'm concerned about his mercury and lead levels. Plus, he was in London during WWII and who knows what other stuff he's got tucked away! It's hard to help him becuase he lives in Florida and i'm in michigan...but he's real open to trying these alternative treatments. (we should say "real" healthcare, not alternative).

take care,

Liz

No...it doesnt work that way. Chemical chelators have a strong attraction for metals...this is their purpose. If a person still has fillings in place I dont know of any Dr. who would start chelation therapy until they are removed. The ones that do this are the ones that are putting the patient at great risk.

The rule is "First do no harm"...You have to remove the source of mercury before you can address what is accumulated in the body. You cant continue to poison yourself at the same time that you're trying to clear mercury from the body.

Strong chelators can mobilize significant amounts of mercury from the surface of the fillings...this can rapidly increase the mercury burden in the body. You would not be lowering the amount of mercury in your body....you would be increasing it. The chelator will likely mobilize more than it will actually excrete...so you will have an increase of mercury in your system because the chelator will pull mercury from the fillings.

The proper way to go about it is to remove the fillings first...only then can you address what is in the body. The kidneys tend to accumulate the highest amounts of mercury. If the excretory organs contain high levels of mercury and the total body burden remains high...you cant start pulling even more mercury into the system without having problems from doing that. In other words...you would be bringing more mercury into areas which are already burdened and you would be increasing the toxicity in those body parts.

When the source of mercury is safely removed the chelator is addressing whats in the body. Its not a short process but little by little the body burden is lowered. There are certain ways to go about it. You dont try to chelate mercury from the brain until everything else has been addressed....because if the load is still high elsewhere there is a good chance some mercury will get redistributed back into the brain.

The body stores mercury so that there is some "balance"....so as you get rid of it the body will "shift" some of the burden to areas which have a lesser burden in order to keep balance. First extracellular mercury is removed from the body and then later on intracellular mercury will come out...the whole time the body is trying to keep a balance.

If you pull mercury from the wrong areas early on in treatment and the "exit routes" have not been cleared....the mercury does not leave safely....it gets redistributed causing more damage. Basically that means if there is still a heavy burden in your tissue and in your organs....you cant be mobilizing mercury from other areas and expect it to leave the body if the roadways are still blocked.

Thats why you cant attempt chelation until fillings are removed. The purpose is to remove whats already in the body....not to add to it by pulling even greater amounts from the fillings.

Hope that makes sense.

Its only safer to leave them in when the removal process isnt going to be done properly. If its done the way that it should be done....with all safety precautions in place....its much better to have them removed. They should be removed in installments rather than all at once and supplements should be taken following each set of removals to support the immune system and to help the body eliminate whatever mercury it was exposed to during the removals.

So in the end its much more harmful to leave them in. The amount of vapor released from the fillings is not considered to be low. It exceeds what is considered to be the "safe" limit.....although mercury has never been proven to be safe at ANY level.

Have you seen this video?

I did my hair analysis about 4 years ago....just some random lab I found online. I'm now more familiar with the various labs and if I ever retest I would use Doctor's Data.

I think the hair analysis is very useful....but only if you know how to interpret the results.

Mercury typically doesnt show up elevated in the hair analysis. Only when the exposure is very recent will you see some in the hair. Mercury only stays in the blood for a short time before its stored away...so its not usually coming out in the hair unless theres significant amount in the blood (from recent exposure) and the person can excrete it easily.

Usually its the people who have the most difficulty excreting it who are the most toxic. An example is autistic kids...they have very little to no mercury coming out in various tests...while the healthy kids (who were exposed to the same amounts of mercury) have more mercury showing up. Its because they are more capable of eliminating it...whereas the autistic kids are not letting go of it.

To determine whether or not mercury is a problem with a hair analysis you have to look at the essential mineral profile. That will give you a good idea as to whether or not mercury is an issue.

Heres an explanation.

There is alot more detail here: Open Original Shared Link

[gfpaperdoll]

The definition of celiac which is damaged villi - is too narrow. Some of us have other problems from gluten but if those problems do not kill us first we will develop villi damage. The problem is that we that do not have villi damage as a first symptom are dying of cancer before the villi are damaged. Or we are dying of complications of obesity, asthma, diabetes, heart disease or a few other of the "rare" autoimmune illnesses, Hemochromatosis, HS & polysistic kidney disease comes easily to mind.

You can talk about metals, lyme, mold, bacterial, etc etc but the bottom line is that the human species is not evolved to eat grains. Neither are cows supposed to eat grains, that is why they have to pump them full of antibiotics, hormones, etc to keep the cows halfway alive while feeding them grains to make them nice & fat so the steak on your plate will be tender.

The plain truth of why most people do not get better on a gluten-free diet is that they do not give up dairy, soy or artificial sugar, or artificial colors, preservatives AND they add in all those gluten-free grains and junk to just replace the sorry gluten diet with a sorry gluten free diet. AND they do not pay attention to labels or cross contamination. For a few people they could have other issues but most do not...

I have just taken an 83 year old woman gluten-free and dairy free - she has had the classic celiac symptoms for 3 years. She has improved like lightening!!! Her appetite is amazing & her bowel habits went to almost perfect in about 3 days. With her son's approval I have cleaned out her kitchen & have her on a strict whole foods, mostly grain free diet. OMG she even went to the farmers market with me yesterday. She does not drive so she can only eat what is in her kitchen. So that makes it easy. Of course besides her celiac - which the doctors never figured out she is as healthy as a horse. & her son told me that she has been checked out for everything & he has been told that she will probably outlive him.

she is on 4 meds for her symptoms which were: severe weight loss, severe stomach pain, diahrrea, constipation, anxiety, depression, panic attacks, peripheral neuropathy - so all she got for that were meds with the same side effects as the symptoms!!!! at least she has not been absorbing the meds!!

[Rachel--24]

Good point. But aren't there alot of people who DO just tend to have a problem with gluten and don't have the celiac genes? I know there are plenty of people who have multiple issues, but I guess I was under the impression that many people are having issues like osteoporosis or nerve issues etc, who do not have the celiac genes, but for whom gluten is attacking different body systems, ie. autoimmune reaction, but without villi damage. Also, doens't elevated tTg indicate autoimmune reaction? Guess i'm just confused on some of these issues.

Osteoporosis is a complication of Celiac Disease (if left untreated) because of poor nutrient absorption due to damage in the intestinal tract. Normal apsorption is usually restored once the diet is implemented and healing has taken place.

Basically, the same complications can occur if other conditions which leave the gut in an unhealthy state are left untreated. Many things can cause malabsorption...so the same things that can cause a person to become gluten intolerant (non celiac) can also cause some of the same complications that are a result of poor nutrient absorption (i.e. osteoporosis).

Suppose a healthy person with no predisposition for Celiac loses their ability to digest gluten. This can happen...the enzyme required to digest gluten and casein can become inhibited/blocked by heavy metals (mercury in particular). If the enzyme is no longer able to break down gluten this will result in inflammation in the gut. Eventually that inflammation wil cause damage resulting in increased permeability. So now there is undigested gluten in the bloodstream and the immune system responds.

These symptoms can be very severe and I'm not saying that autoimmune problems wont occur...because as leaky gut allows foreign "invaders" to enter into other areas of the body...autoimmune problems are more likely to occur. Leaky gut sort of opens the door for autoimmune conditions in the body.

However, we STILL cannot call this Celiac Disease....or "pre-Celiac"....or "Celiac in its early stages". I really dont think you can be "a little bit" Celiac...you either *have* that autoimmune response occurring in the gut...or you dont.

That was just one example of many possible scenarios. If a person is still fully capable of digesting gluten (the enzyme is not inhibited) but ends up with a parasite that causes enough inflammation to damage the intestinal lining....its the same thing...gluten can still cause significant problems once its in other areas of the body. Without the genetic predisposition and the "trigger" which activates the disease....its STILL not Celiac.

Since leaky gut can be caused by a wide variety of things and the condition itself causes poor nutrient absorption we still cant say that these complications are a result of Celiac. They are a result of damaged intestines and many things (besides Celiac) can damage the intestines.

In my example the person who's DPPIV enzyme was inhibited ended up with leaky gut because they could not break down gluten...which resulted in inflammation. If that person went on the diet they may experience healing and total resolution of symptoms considering that gluten was the cause of the leaky gut in the first place. However, its STILL not Celiac. If that person were to regain function of the enzyme they would not require a life-long diet as a person with Celiac would. If that person took enzymes (containing DPPIV) specifically designed to break down gluten they may be able to consume gluten without any of this damage reoccuring.

Many non-celiacs DO use the enzymes in place of the diet and do not suffer symptoms....because the protein is broken down and you do not have undigested gluten causing inflammation in the gut. A person with Celiac would still have the same damage if they were to attempt this....because its a different condition entirely.

tTG can be elevated for causes other than Celiac. Other autoimmune conditions can also cause tTG to be elevated. My Enterolab results came back with positive tTG....but I do not have Celiac. I also had very high malabsorption...and it was not resolved by removing gluten. If there was any type of autoimmune problems occuring as a result of having gluten in my diet it was not because I have Celiac. It was because I have leaky gut, enzyme dysfunction and a bunch of other problems that originated from a source other than gluten.

Actually, I was saying that celiac is one manifestation of gluten sensitivity, where gluten sensitivitiy is the tip of the iceberg and all the various forms of it underneath, including celiac, non-celiac etc.

Dr. Fine (Enterolab) states that gluten sensitivity is an epidemic...with those diagnosed as Celiac at the "tip of the iceberg".....and other forms of gluten sensitivity underneath that. The ones who are sensitive have not yet reached the level of damage which would allow for a positive diagnosis of Celiac.

A few years ago I was buying into his theory...but after spending alot of time on this board and doing plenty of research it no longer makes sense to me. Also, after several years of making claims, Dr. Fine still has yet to publish anything for peer review. I highly doubt that he will...not because I think that he doesnt strongly believe what he's saying...but because there is not enough evidence to support his theories. I dont think that his tests can be considered diagnostic. Some people do get the results they're looking for but a very large percentage continue to suffer.

Also, Enterolab tests these other highly allergenic proteins and recommends a life-long diet if positive. What??!! These are all foods which are going to become problematic in a situation of increased permeability. If the gut is HEALED these proteins do not leak into the bloodstream and cause problems. He is basically saying that ANY foods which are causing an immune response need to be restricted for life. I have not ever heard that anywhere else. People become reactive to these foods when they have a leaky gut. Its not like Celiac where the autoimmune response is occurring *in* the gut and the only way to prevent that is to adhere to a lifelong gluten-free diet. These other reactions are occuring BECAUSE the gut is damaged.

Well, on this point, we have to remember that the people that do feel better, don't hang around on these forums for long...so judging this based on what you see here may not be representative of what's really going on.

True, but after nearly 3 years of reading these posts (as well as posts on other forums)...I think that I've witnessed enough to come to a pretty good conclusion. I'm not seeing all that many people who have many symptoms and no Celiac genes get to the point where they can say they've fully recovered on this diet. I do see some who have minor symptoms such as bloating and gas resolve their symptoms simply by eliminating gluten. These people most likely are not able to digest it very well and these symptoms resolve on the diet.

She's really sensitive to food dyes and MSG/aspartame as well.

Me too.

I'm sensitive to all of the chemicals.

[Rachel--24]

The definition of celiac which is damaged villi - is too narrow. Some of us have other problems from gluten but if those problems do not kill us first we will develop villi damage. The problem is that we that do not have villi damage as a first symptom are dying of cancer before the villi are damaged. Or we are dying of complications of obesity, asthma, diabetes, heart disease or a few other of the "rare" autoimmune illnesses, Hemochromatosis, HS & polysistic kidney disease comes easily to mind.

I dont know about that. I agree that gluten can cause some serious problems for all of the reasons I posted previously but without a genetic predisposition your condition wont someday suddenly "turn into" Celiac Disease. There is no evidence to support this. I agree that you will die from something else before you ever develop the villi damage!! I totally agree with that. You cant develop an autoimmune disease that you arent genetically susceptible to.

Sorry, but there is just no evidence that it can happen. To the contrary...as you just stated...you do NOT have villi damage as a symptom and will die of other causes before villi damage ever occurs. That is NOT Celiac Disease because Celiac Disease IS damaged villi.

Your symptoms did not resolve on the gluten-free diet alone....you have had to eliminate many foods and stick to a very plain diet in order to feel well...how can you be certain that you have Celiac if you have not tested positive for the disease?

I agree that any of us can die from other conditions which can be caused by problems occuring in the body not only from gluten..but all sorts of pathogens and toxins being passed through the leaky gut. How can we blame it ALL on gluten...and for EVERY person who has ever become sensitive to gluten for ANY reason?? It makes no sense.

Some people have a mouthful of mercury (the second most toxic element on the planet) and have all sorts of digestive issues (gluten intolerance being only one of several food intolerances) and yet EVERY problem is blamed on the gluten (even long after gluten is removed from the diet!). Again, it makes no sense.

You can talk about metals, lyme, mold, bacterial, etc etc but the bottom line is that the human species is not evolved to eat grains.

and we are suddenly hit with this epidemic just in the past couple decades?? All of a sudden there is an explosion of people who cant eat gluten and it has NOTHING to do with these other factors?? Sorry, but the evidence is to the contrary....take a look at autism for example. That condition is not caused by grains.

Also, its not only GRAINS which we are having problems with. These are your own words...

The plain truth of why most people do not get better on a gluten-free diet is that they do not give up dairy, soy or artificial sugar, or artificial colors, preservatives AND they add in all those gluten-free grains and junk to just replace the sorry gluten diet with a sorry gluten free diet.

If GRAINS are the problem then why do so many also need to eliminate dairy, soy, etc. Have our bodies suddenly in the past couple decades realized that we are not evolved and cannot eat eggs, yeast, dairy, soy, wheat, etc. etc??

Autistic kids do not require a GRAIN-FREE diet....they require a gluten-free/cf diet because they have leaky gut and these foods contain OPIATES. Many of them are also deficient in DPPIV...and they CANNOT digest these foods. Its not because they havent evolved...its because the enzyme necessary for digestion is inhibited and they have leaky gut. Thats why when they supplement that particular enzyme many of them no longer have a problem with the foods...or the symptoms.

I have just taken an 83 year old woman gluten-free and dairy free - she has had the classic celiac symptoms for 3 years. She has improved like lightening!!!

I'm not saying that people dont improve on the diet...and I'm not saying that there arent TRUE cases of Celiac Disease. There are PLENTY who are Celiac.....but I do not agree that every person with a sensitivity has Celiac (as you suggest).

There are MANY people with undiagnosed Celiac who are walking around totally asymptomatic. Many of them will test positive in blood and biopsy...any YET they have NO symptoms.

Why would some of us have to suffer horrible symptoms for years and DIE from all of these "complications of Celiac" and yet never test positive for the disease??" That makes no sense. It makes more sense to say "Hey...I dont actually carry the genes that trigger this disease...I do not test postive for this disease...I am not actually recovering from this disease by following a gluten-free diet alone...so MAYBE I have something else going on??"

[Lizz7711]

You've given me alot to think about. I was previously thinking that there was not really any difference between my daughter's need to avoid gluten and my own. But since I have the celiac gene and she doens't, perhaps HER issues had triggers that caused the leaky gut that could actually be healed. So there's hope for her to eat normally one day (although i'd still not recommend much wheat or dairy for anyone anyway!). Are there any scientific articles that talk about this idea? Seems like everythign I see online says to avoid gluten for life if you have gluten sensitivity.

The weird thing with my daughter is that all of her antibody numbers were higher than mine, but yet she's only 9 years old--how did her gut get so damaged if not celiac? From birth she did have constipation issues so I wonder if it was from mercury passed through me to her in utero? Also, while pregnant I had to take an anti-nausea pill (zofran) for 7 months due to SEVERE vomitting and nausea--supposed to be safe, but you know how that goes with medications.

[Rachel--24]

The weird thing with my daughter is that all of her antibody numbers were higher than mine, but yet she's only 9 years old--how did her gut get so damaged if not celiac?

Enterolab states that the antibody number does not indicate severity of damage. They say a positive is a positive....whether your number is 11 or 300. A higher number doesnt mean "more damage"....according to Enterolab.

Your daughter could very well have more damage though...even at her age. If you were to ask my doctors this question "How did her gut get so damaged if not Celiac?".....I think they might answer "Vaccines".

They treat alot of kids with major food intolerances....many are on the spectrum and some are not. If you read the thread I was posting in yesterday you'll see what I'm talking about.

Open Original Shared Link

You cannot inject a living being with these poisons and expect there to be no adverse effect at all. What varies, and varies greatly, is merely the degree of damage. Open Original Shared Link

I'm definately not against vaccinations but the way they're being administered today is not safe. There is plenty of evidence to support this. Normal healthy babies reaching all of their milestones and then regressing into autism the very day they recieve their shots.

I've never believed that its only the kids on the spectrum who are affected (my thinking is not that narrow). *Anyone* can be affected when injected with multiple toxins....or even ONE toxin (such as mercury).

Kids have problems nowadays that they didnt have when I was growing up. I didnt know a single person who was on a gluten-free diet or needed to avoid casein, soy, egg, etc. etc. All my friends were healthy and we all ate what we wanted.

From birth she did have constipation issues so I wonder if it was from mercury passed through me to her in utero?

Mercury does pass through (very easily)...if you have alot of fillings she would have been exposed to significant amounts of mercury. The fetus is very susceptible.

About 630,000 children are born each year at risk for lowered intelligence and learning problems due to exposure to high levels of mercury in the womb, according to a new analysis by the Environmental Protection Agency.

That's nearly double the previous EPA estimate of 320,000 babies a year.

The new estimate is based on data collected by the Centers for Diseases Control and Prevention and recent studies that show the level of mercury in the umbilical cord blood of newborns is 1.7 times higher than the mercury level in their mother's blood. According to the new estimate, one in every six women of childbearing age has enough mercury in her blood to pose a risk to her child, compared to previous estimates of one in every 12 women.

While adults can be harmed by long-term exposure to small amounts of mercury, a powerful neurotoxin, the risk is much greater for fetuses and young children because their nervous systems are still developing

Mercury vapours from dental amalgams absorb directly into the blood and practically all body tissues including the oral cavity, the lungs and the gastrointestinal tract.

Mercury fillings in pregnant women also affect the growing fetus. Within three days of placing amalgam fillings in pregnant sheep, mercury shows up in the placenta of their babies. One study showed that around the time of birth, most fetal tissue had higher levels of mercury than that of the mothers. Mercury amalgams may affect fertility.

Autopsies done on aborted human babies found that mercury levels in the brain, liver and kidney correlated significantly with the number of amalgam fillings in their mothers.

Sometime in the early 70's the formula for amalgams was changed and the new formula releases much more mercury vapor....these are the fillings most of us have now. Mercury vapor from the fillings does get absorbed into the GI tract and the intestinal environment is very much affected by that.

We cant put mercury into a lake everyday and not see changes occur as the water becomes more and more toxic....the organisms living in that environment are affected. Why would we think its any different in our body? We have billions of living organisms in our gut and the constant exposure to mercury does have an affect on the gut ecology. The environment becomes more favorable for yeasts, parasites and all of the things which lead to development of leaky gut and food intolerance.

Proper digestion is essential for good health. When the gut is in an unheatly state its just not possible to maintain good health. A very large percentage of the immune system is in the gastrointestinal tract....all of those billions of living organisms serve a purpose in keeping us healthy. Its not too smart to poison that environment....even though thats exactly what we're doing.

I was previously thinking that there was not really any difference between my daughter's need to avoid gluten and my own. But since I have the celiac gene and she doens't, perhaps HER issues had triggers that caused the leaky gut that could actually be healed. So there's hope for her to eat normally one day (although i'd still not recommend much wheat or dairy for anyone anyway!).

When people say "Do I still need to be gluten-free even if I'm *just* sensitive and not Celiac?"....I would answer "Yes, the treatment is the same for both"....and it really is. If you're reacting to it...its obviously not good to eat it.

The DIFFERENCE is that if you dont have Celiac it may be possible to correct the imbalances by treating underlying issues which have caused the situation to occur. Without doing that a lifelong restricted diet would be necessary...because nothing would change. If taking enzymes works then that would be a way to avoid the lifelong diet.

Mercury blocks enzyme systems in the body....thats one of the main things that it does which has a huge impact on our health. The DPPIV enzyme is particularly sensitive to small amounts of mercury. I'm not sure if even after addressing mercury...enzyme function is restored for everyone. I dont know how that works.

One Dr. who is considered to be one of the world's leading experts on mercury detoxification stated that mercury toxic patients have lots of food allergies. He said you can take away all of the foods but he doesnt do that....instead he detoxes the mercury and the food allergies start to fall off as the body becomes less toxic.

One of my own Dr.'s said that yes...when the body is "cleaned up" all of these food issues disappear. I asked him if that included gluten and he said "not always." He said that is the one food that some people are never able to "get over" and they need to remain gluten-free.

I think those would be the people who are either Celiac or non celiac but still lacking DPPIV....and to continue eating gluten would mean to continue having problems.

Are there any scientific articles that talk about this idea? Seems like everythign I see online says to avoid gluten for life if you have gluten sensitivity.

Thats because there is not alot of focus on getting to the root of the problem. The easiest road is the one thats always taken. I guess I'm not someone who wanted to go down that road. I didnt want to take medication to cover up my symptoms and I didnt want to have to restrict a bunch of foods for the rest of my life without knowing *why*.

If I had Celiac I would understand why I cannot eat gluten.....but I do not have Celiac and I'm intolerant to many foods in addition to gluten. In my mind *something* had to have caused it. I was not born with this intolerance so something *triggered* it....and if its not Celiac then I needed to know what it really was....otherwise how would I ever recover?

Sure I could say that I must have some as of yet "unidentified" form of Celiac Disease....but that is really not going to help me in the long run. The cure for Celiac Disease is the removal of gluten....not the removal of gluten, soy, dairy, salicylates, nuts, corn, preservatives, etc. etc.

I dont know if there are any scientific articles which talk specifically about gluten sensitivity. I think the consenus is that "its not understood". I dont think there is much focus on non celiac gluten sensitivity period. They dont have any answers so the best answer is to avoid it.

Even if the answers are there they are often too controversial and many people would not be willing to consider it. The vaccine controversy surrounding autism is a perfect example. I think its significant that the vast majority of these kids have leaky gut, yeast, bacteria, etc. They also have heavy metal toxicity. I talk to the doctors treating them and these kids didnt become so damaged from gluten...but gluten is a major contributer to symptoms (especially behavioral/cognitive) because of the poor digestion/leaky gut.

People get upset at the mention of these things (mercury, toxins, bacteria, parasites, yeast, etc.) but these are the things that are at the root of the health issues in a large percentage of the population. ASD'S now represent a big part of the youth population.

Like I said before....there are people with a mouthful of metal who dont want to hear any of it. If they develop autoimmune disease, cancer, osteoporosis, Alzheimers, kidney disease, obesity, etc....it will have nothing to do with the fact that they have been exposed to large amounts of the second most toxic element on the planet for most of their life. It will be because they used to eat gluten and they never recovered from it.

The body is actually really good at repairing itself as long as its not burdened by poisons. Thats why some people with total destruction of the villi have no problems once they follow the diet and heal. They have taken the poison away and that allowed their body to recover.

Some people arent taking "their" poison away....so they arent ever giving their body the chance to recover. If a person with Celiac continues to consume gluten they will suffer the consequences. If another person continues to expose their body to a poison that it does not like...they will suffer the consequences. Gluten is not the #1 poison for everyone...and thats why some people do not heal.

Despite the fact that over 100 published scientific papers directly implicate mercury released from amalgam restorations as a major contributing factor in chronic illness, groups like the Canadian Dental Association (CDA) refuse to acknowledge their existence. It should be noted that no government or professional agency has ever shown that mercury in dental amalgams is safe. This includes the American Dental Association (ADA), the CDA, the Food and Drug Association (FDA) and the Canadian Health Protection Branch (HPB). In its reactionary attitude, the ADA has even published literature which threatens that any dentist who removes amalgam restorations due to mercury toxicity is to be considered unethical.

Even with all of the studies which clearly demostrate the toxicity of mercury and its effects on human health...nothing changes....and we wonder why the kids have so many health problems today. I think I read that 1 out of 3 kids has a learning disability now...maybe it 1 out of 6....either way its NOT GOOD.

[Lizz7711]

Excellent points. I'm with you on the vaccine/autism issue. Unfortunately, I didn't get on a Health kick until after my daughter had had all of her vaccines, including chickenpox. I'm sure they have contributed to her intestinal issues, although she did have constipation etc before any vaccines so it's likely the mercury was the triggering issue and the vaccines probably did more damage, plus antibiotics for ear infections she had the first couple years. Thankfully, my daughter did not suffer any learning problems and does quite well in school. It was just her behaviors last summer that caused me to look into food problems...I was ready to get a shrink for her because of her extremely angry, rage-like, behaviors...she also exhibited some autistic-like behaviors in those episodes such as repeating phrases over and over again for literally 45 minutes non-stop. It was terrible and I had family members saying "it's not food Liz"....they were wrong. She's a new kid now, and she knows and can tell the difference now when she has gluten or food dyes and goes off the deep end.

What's the best way to check for her mercury levels, or to do detox for a kid? It's so hard to find supplements/treatments for children.

I agree completely we need to get to the root of the problem and focus on treating THAT. I think with my daughter i'll start with hair analysis, and also get the enzymes you recommended. I'm sure she has yeast issues since I'm pretty sure i have systemic yeast issues although I no longer get many vaginal infections so I should do the yeast diet...but getting her to do NO sugar when she's already so restricted will be very difficult.

thanks again for all your help...you're a Godsend

Your daughter could very well have more damage though...even at her age. If you were to ask my doctors this question "How did her gut get so damaged if not Celiac?".....I think they might answer "Vaccines".

Mercury does pass through (very easily)...if you have alot of fillings she would have been exposed to significant amounts of mercury. The fetus is very susceptible.

Even with all of the studies which clearly demostrate the toxicity of mercury and its effects on human health...nothing changes....and we wonder why the kids have so many health problems today. I think I read that 1 out of 3 kids has a learning disability now...maybe it 1 out of 6....either way its NOT GOOD.

[fedora]

I wanted to say that I did not get the blood test or biopsy. I went on the diet then did the enterolab tests.

my results were positve for gluten, casein, and tTg, I had no malabsortion, not even close.

I have DQ1,5 and DQ2,2(the non celiac gene)

Going off gluten fixed almost all my problems except for one my dr. says is unrelated(a genetic spine joint problem). I have done diet eliminations for soy, corn, potatoes and tomatoes. I have no problems with them. In fact my digestion is perfect now for most of the time.

I had symptoms in every area of my life-digestion, hormonal, moods, skin rashes, brain(vision, speech),low blood pressure.

In my case, gluten is the problem. I could be one of those rare individuals who developed celiac with only half the celiac gene. In fact most celiacs without DQ2.5 or DQ8 have my gene. But I will never know for sure. Chances are I don't have villi damage.

Even though I didn't have a malabsorption score, I do have anemia and have had it on and off for years(my dr says that is from menastrating)

I have had many blood tests done, all perfect

I totally think non- celiac gluten intolerance can be it's on individual problem

[Lizz7711]

That is interesting, i'm glad you responded so well! Can you explain your gene profile to me? I'm confused becasue my results from enterolab say HLA-DQ2,1 (2,6) and that that indicates the celiac gene (2), but you are listing 4 different DQ genes and saying you need to have DQ2.5 or 8 for celiac?

have you ever tried these enzymes discussed here and then eat gluten? Do you have reactions if you eat gluten now?

I also have had anemia, but it's due to hypothyroid I think.

take care

(

I wanted to say that I did not get the blood test or biopsy. I went on the diet then did the enterolab tests.

my results were positve for gluten, casein, and tTg, I had no malabsortion, not even close.

I have DQ1,5 and DQ2,2(the non celiac gene)

Going off gluten fixed almost all my problems except for one my dr. says is unrelated(a genetic spine joint problem). I have done diet eliminations for soy, corn, potatoes and tomatoes. I have no problems with them. In fact my digestion is perfect now for most of the time.

I had symptoms in every area of my life-digestion, hormonal, moods, skin rashes, brain(vision, speech),low blood pressure.

In my case, gluten is the problem. I could be one of those rare individuals who developed celiac with only half the celiac gene. In fact most celiacs without DQ2.5 or DQ8 have my gene. But I will never know for sure. Chances are I don't have villi damage.

Even though I didn't have a malabsorption score, I do have anemia and have had it on and off for years(my dr says that is from menastrating)

I have had many blood tests done, all perfect

I totally think non- celiac gluten intolerance can be it's on individual problem

[Rachel--24]

I totally think non- celiac gluten intolerance can be it's on individual problem

We actually don't know whether or not you have Celiac since you werent ever tested and you have the half gene that some diagnosed Celiacs have.

When I'm referring to non-Celiac I'm mostly referring to those who do not carry any of the genetic markers linked to Celiac and who actually dont test positive for the disease.

Alot of people forgo any type of testing and come to their own conclusion....some of them would be true Celiacs and some wouldnt....its hard to come to a definate conclusion when there is not enough data.

As I stated previously I think that gluten can cause some pretty nasty symptoms in non-celiacs. If you cant break it down (digest it)....its going to cause problems. By removing gluten from the diet an autistic child can improve at least 60% in all areas....but still...the root of the problem is not gluten itself. The gluten intolerance is a result of something else going on.

I'm not saying that removing gluten doesnt help....quite the opposite actually. It does help quite a bit....but its not the "cure". The reason for non-celiac gluten intolerance can vary from person to person....each person will not have the same underlying conditions leading to the intolerance...which is why it cant be identified as its own disease.

Celiac can be identified by its genetic markers, by specific antibodies in the blood and by damage to the villi. Non-Celiac cannot be identified with any type of proven test. Enterolab is not a proven test.

So even if a non-celiac experiences very positive results from the diet it doesnt necessarily mean that they've gotten to the root of the problem. They dont have an understanding of what *caused* their intolerance to develop and that means that down the road...whether its days, weeks, or months later....they can develop additional problems/intolerances. If gluten sensitivity is a symptom of an underlying cause then improvement is based on treating the symptom.....it doesnt mean that the underlying issue does not remain.

It is extremely common to find people on these boards who felt *great* after they removed gluten...but then a few months down the road all of the symptoms are returning and they dont know why. Then they remove dairy and once again they've found the answer and are feeling great....and a few months later there are more problems.

Thats why I think its important for people who end up in that situation to understand that something other than gluten may have led to their problems and that Celiac and non celiac gluten sensitivity are not the same condition.

[Rachel--24]

I have had many blood tests done, all perfect

Believe it or not when my whole body was falling apart all of my bloodwork was perfect. I felt like I was dying and every part of my body seemed affected....I'd lost 25 lbs. and yet NOTHING showed up in any test in over 3 years.

That was one of the most frusterating experiences of my life.

I had my blood drawn more in 3 years than most people would in their entire life! Also, there were unltrasounds, CT scans, a brain MRI, x-rays, endoscopy, colonoscopy, barium tests, etc. Nothing ever showed up in any test. I was referred to a phsychiatrist because they couldnt find anything wrong with me.....then the psychiatrist said she couldnt help me because there REALLY was something *physically* wrong...it just hadnt been identified.

There was never any doubt in my mind that something was physically wrong...I dont care how perfect the tests appeared. I really didnt understand how all of the tests could not find a cause for everything falling apart...but they didnt. I was told numerous times that I'm the picture of perfect health based on the lab results...they looked better than most people's.

All this time later and with totally different types of lab tests...things arent looking so normal anymore. I had to see specialists outside of conventional medicine to get the right tests ordered. At my first doctor appt. I had a stack of lab results from the previous years...all normal. The new Dr. said that if I had Lyme Disease or mercury toxicity or some other type of illness caused by toxicity...the conventional lab results would appear normal....even if I'm severely toxic.

[home-based-mom]

I really didnt understand how all of the tests could not find a cause for everything falling apart...but they didnt.

This was/is probably because tests are run looking for something specific. Either it is found or it isn't.

Someday it would be nice if instead of testing for specifics, they could just look to see what is there and what isn't there. That may be a pipe dream of the future, but it sure would save a lot of time and money and suffering!

[Rachel--24]

Someday it would be nice if instead of testing for specifics, they could just look to see what is there and what isn't there. That may be a pipe dream of the future, but it sure would save a lot of time and money and suffering!

Its not a pipe dream! There IS a test like this and it has saved me alot of time, money and suffering.

Its an alternative method of testing called "Autonomic Response Testing" (ART). I was set up for this type of testing since so many different things were showing up for me and my Dr.'s didnt really know where to start treatment...not really knowing which issues were small issues and which ones were significant.

For example my Western Blot for Lyme wasnt clear...it indicated I'd probably been exposed but we didnt know if I had an active infection which required treatment. Another bloodtest was highly positive but only 80% specific for Lyme....so we still didnt know *for sure*.

In case its not obvious I kind of like to know *for sure* what the heck is going on and if I'm treating the right thing.

I then had bloodwork for some of the other "bugs" that could cause that particular Lyme test to be positive. (EBV, CMV, Herpes Viruses). The HHV-6 was positive but the doc said it indicated past infection. I looked it up...turns out most of the population is exposed before age 2. A positive could mean past OR present infection. So still no real answers on that issue.

Also, my Dr. wasnt wanting to test me for mercury right off the bat...he was holding off on it because he felt that I was too sick to take the test. He was looking at everything else first....a process of elimination.

Another practitioner I was seeing for "desensitization" treatments (beacause I was reacting to everything)said that I just had way too much going on and we need to prioritize the problems so we know where to start treatment.

Thats when I got set up with a new Dr. who does ART.

Its like taking a "peek" inside. In a matter of minutes the Dr. can identify what things are causing the most stress on my body. She can identify what is causing the most stress on my autonomic nervous system and those are the things causing chronic illness. It was mercury that showed up the first time I was tested and every time since. I think I've been tested about 5 times now. I get retested about every 3 months.

In the beginning yeast was a major issue and bloodwork confirmed it. Lyme was a weak issue and not likely contributing much. I had more bloodwork which confirmed that it was more than likely an inactive infection.

Yeast is much better now...Lyme does not show up at all anymore after I did some treatment (no antibiotics). All of this is re-checked at each visit. The mercury is still the main thing with not much else appearing with such significance. It shows up as a very clear and strong burden to my autonomic nervous system.

Not only can the test identify my most significant problems but it can also let us know which treatment options will be most effective. Instead of guessing at what might work...or what my body might tolerate...we are able to know right away what is going to work best. For me that has been one of the best parts...because prior to that I would take various things and get sicker because I was highly sensitive and reactive. My Dr. was reluctant to start any treatments at all...not knowing how it would affect me. ART has helped so much with that!

Anything can be tested. I can have her test me for foods, supplements, medications, whatever. She tells me if my body likes it or doesnt like it.

Its no pipe dream...my Dr. can "see" whats there and what isnt there and yes....its saved me all of the time of figuring things out the hard way...its saved me money because I no longer throw it away on treatments which are not right for me...and its saved me a whole lot of suffering because I no longer have setbacks due to taking the wrong supplement or medication.

More important than ALL of that....its given me piece of mind because I'm no longer going crazy trying to figure it all out.

Its been the best thing available to me and very accurate.

I remember my Dr. telling me that nothing showed up in any conventional labs that were run by my HMO because my problems are "intracellular". Mercury does its damage inside the cells....so there really isnt anything to see in any of those tests which were run.

I have since had more specific labwork done....along with ART every few months.