Hla-dq 1,1 (subtype 6,6)

[trcn]

May I reach out to you all and ask for help deciphering my results. I can tell I have to eliminate soy, casein, gluten (have been gluten-free x 4 months), and yeast (?).

I have autoimmune thyroid disease (Graves AND Hashimotos antibodies) and my health trouble started immediately after having radioactive iodine ablation of my thyroid.

I am blessed to say that my only symptoms are major, constant hair loss and acne. I am 38, female. Acne cleared briefly when I went gluten-free. I've been CF, SF x 5 days and again acne is clearing. I realize these symptoms are nothing compared to the pain most on this board experience and I bow to that level of involvement. Nonetheless, it seems I am (was) heading right down the same highway as those with more severe symptoms?

Please interpret based on your experiences the following:

Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 78 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 46 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein! (cow's milk) IgA antibody 54 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel

Fecal anti-ovalbumin (chicken egg) IgA antibody 8 Units (Normal Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 10 Units (Normal Range <10 Units)

Fecal Anti-Soy IgA 17 Units (Normal Range <10 Units)

My father has MS and drinks Pepto Bismol by the gallon for as long as I can remember. He also is a dentist (Mercury!!) and violently denies that he could need a gluten-free diet... stubborn.

Thank you so much.

Tracy

[Rachel--24]

Hi,

How long ago was it that you had your thyroid ablated? I had Graves but managed it pretty well with meds for the first few years. After some dental work I had done (mercury!) and antibiotic treatment (yeast!) my symptoms worsened significantly. One of the first things was hairloss (bigtime) but I also was having very bad headaches, sweating, shakiness, inability to handle stress, etc.

After a few months of things getting worse I went for the radioactive iodine thinking that all my symptoms were caused by the Graves. The doctors told me the RAI was the only way to feel better at that point.

I too got worse after RAI. The hairloss increased, headaches became unbearable, there was bad eye pain and sensitivity to light and I suddenly had lots of acne (especially on my back). After RAI the TSH levels can go down before they go up....which is what happened to me. My TSH went way down and T4/T3 were sky high.....I went VERY hyper. It was to the point that the Dr. became concerned and gave me the thryoid meds to get in under control.

From there I went totally in the opposite direction and became extremely hypo....I think my TSH was 26.5

Once I got on the meds and the correct dosage was determined everything went into the normal ranges. The symptoms related to the hormone increase/decrease improved....so the hairloss wasnt as much of an issue and the acne cleared up as well. Every other symptom I had prior to the RAI and the ones that developed during and after that time did not improve and apparantly werent related to my thryoid condition. I actually spent a couple years trying everything under the sun with my thyroid meds thinking that I just wasnt at my "optimal" level....regardless of what the lab reports were saying. None of it helped though.

Anyways, if you experienced these symptoms after RAI and you did this recently....it might be that this was a result of the hormone levels rising and falling. After RAI things kind of freak out for a period of time...with Graves things sometimes get worse before getting better following RAI.

I believe that leaky gut is the "gateway" for autoimmune conditions because it allows for undigested food, bacteria, fungi, toxins, parasites, etc. to leave the gut and enter the bloodstream. These are the things which trigger immune responses which can result in autoimmunity.

Since you have sensitivities to all of these major food proteins you would more than likely have a leaky gut.....which is why your immune system is responding to those foods in that way.

If I could do it all over I would never have went through with RAI....instead I would have focused on healing my gut. Alot of the autoimmune problems can resolve once the gut is healed (which isnt always an easy process).....thyroid disease is one that *can* resolve completely when the root of the problem is addressed.

Unfortunately, I knew nothing about any of this during the time that I went through it.

I believe my gut had been leaky for quite some time...which is why I had developed Graves to begin with. In addition I also had some OCD tendencies....but I was otherwise "healthy" and symptom free. After my dental work (2 fillings unsafely removed) is when things started to go downhill. I think that yeast was a factor in the leaky gut problem. I got worse after RAI but there were already problems developing long before the treatment.

I think what may have happened is that the RAI stressed my immune system even furthur which allowed the gut problems (yeast/bacteria) to gain a stronger foothold. All of the fluctuation in hormones/antibodies following the RAI would have continued to stress the immune system until things became stable (which took months).

During all of this new problems were appearing....most likely as a result of the yeast overgrowth and damage to the intestinal lining. In my case the acne was a consequence of the RAI and the fluctuating hormones because it eventually resolved on its own before I ever made any dietary changes. However, in the beginning I was told that I had Rocesea (because I complained of burning on my skin along with tiny blisters). This was not an accurate diagnosis but at that time I was prescribed a cream (which didnt work)...and then high doses of tetracycline.

The tetracycline was very damaging to my already severe gut problems....so I got even worse. I was given several rounds of antibiotics during the first year and I was not aware of the risks....I was also unaware of the yeast problem.

Everything just continued to escalate for me as my immune system became overwhelmed with all of the problems....and with all of the constant exposures to toxins and other things entering the bloodstream from the gut. I became increasingly sensitive to foods, chemicals, environmental toxins, metals, etc.

Since you are addressing the food intolerances early on (before you're having major health problems) this will decrease the amount of inflammation in the gut....which is a very good thing.

The leaky gut could be a result of a food intolerance.....or the food intolerances could be a consequence of the leaky gut itself. Many things can play a part in irritating the intestinal lining and once these foods are able to escape the gut the immune system will respond appropriately....as it does with any foreign "invader".

I would definately focus on healing the gut because multiple food intolerances = leaky gut.

[trcn]

Thank you. I had RAI in 2005 and have also tried everything under the sun to relieve my symptoms. I am regulated at 3.5 grains of Armour Thyroid and seem to be doing very well. Hair loss has never stopped and seems to be more related to the food intolerances at this point (?). I am at a great weight and have no symptoms, besides HAIR.

I too had 4 months of tetracyclene after a reaction to iodine (hello, thyroid!) caused acne-like lesions on my face and kept erupting. Anyway, I was a walking yeast infection with no relief given any amount of Diflucan, probiotics, etc. I finally quit the Tet as the yeast was unbearable. This was 2006. I know I have candida issues as I always have yeast present (description withheld intentionally).

I also had unsafe mercury filling removal (while I was in the midst of the worst of the Graves Dz. in 2005) so I was already hyper-immune. I haven't been the same since RAI and I think this all just layers one on top of the other. I am trying to heal my gut at this point, except eating yeast -free is extreeeemely difficult for me given no gluten, casein, or soy too. I'm considering mercury detox, but that will require major research on my part as I know that can be very complicated and dangerous if not done correctly. I have no doctor willing to address ANY of these issues.

Ok, thanks again. And anyone who can comment on the Genetic aspect of my results... I'd be very grateful.

Tracy

[Rachel--24]

As far as the genetic component. I'm not great at interpreting the genes/subtypes.....but DQ1 is more associated with neorological symptoms. A very small percentage of biopsy proven Celiacs have the DQ1 gene instead of DQ2 or DQ8.

That being said.....in all of my time on this board (as well as others) I have not seen anyone with DQ1 clear up their health problems with a gluten-free diet alone. I'm not saying it cant happen....I just havent seen it and I have seen plenty of people with these genes. I, myself have the DQ1 gene.

Many people with this gene seem to have multiple food intolerances and many of the same ongoing problems that I've had. I recently had a thread trying to determine if anyone with DQ1 had their health problems completely resolve after removing gluten....there wasnt anyone who posted that they had these results. I've asked this same question previously but still havent come accross anyone who isnt having to remove alot of other foods in addition to gluten in order to feel better.

Also, many of the people with DQ1 seem to have some of the same issues in common.....mercury being one of them but also leaky gut and yeast as well. All of these issues pretty much go hand-in-hand as it is.

It makes me wonder if those of us with DQ1 are more susceptible to one or more of these triggers?? That was why I had started that thread...to see if people with DQ1 had other things in common besides gluten intolerance. In my opinion if gluten is the *cause* for the problems/symptoms then those should resolve while on the diet....but it doesnt seem to happen in the cases I've seen where there are no Celiac genes....but DQ1 instead.

I'm also not convinced that the very small percentage of biopsy proven Celiacs (1-3%?) with DQ1 actually have Celiac Disease....since there are other factors which can occassionally cause damage to the villi. I guess the only way to really answer this is to know whether those people had a complete resolution of symptoms while following the diet....and I dont know that they did.

I am regulated at 3.5 grains of Armour Thyroid and seem to be doing very well. Hair loss has never stopped and seems to be more related to the food intolerances at this point (?). I am at a great weight and have no symptoms, besides HAIR.

I am regulated at only 1.5 grains of Armour. I suspect that my thyroid wasnt completely ablated. There are times when I've gotten lazy or forgetful about taking my Armour. I've gone weeks without taking it and never getting any typical hypo symtoms...which seems kind of wierd to me.

Another reason that I shouldnt have done RAI...I've never taken pills before and it sucks that I need to take them daily now.

I do still experience bouts of hairloss related to my diet....although nothing as severe as what occured after RAI. I think in my case my hair is more healthy when the yeast is better managed. The more I eat processed foods, sugar or other things which encourage yeast and bad bacteria...the more I will notice problems with skin and hair...along with other symptoms.

I have a hard time keeping my weight up and I'm smaller then I'd like to be.....but I have gained back 15 lbs of the 25 lbs. that I lost when I was really ill (a few years back). I still have issues with malabsorption because my gut infections havent been totally addressed yet. I'm currently doing some testing to get a more clear picture of what needs to be treated and how.

I didnt know I had candida issues until I went to a biological dentist for the safe removal of my two remaining amalgams (2004). He spent a great deal of time with me....more than any Dr. I'd seen. He went over my whole history, symptoms, diet, etc. He told me he felt I had severe yeast problems as well as detoxification problems. Some of the indicators were the thick white coating on my tongue (I got that while on the tetracycline) and some skin eruptions he saw on my neck and shoulders. Also my symptoms were consistent with yeast problems.

I am now working with some very knowledgeable Dr.s and I've had tests which confirmed the significance of the yeast problems. My blood antibodies for intestinal yeast were through the roof. I'm still doing other testing and still trying to determine the root cause.....since yeast doesnt generally explode unless the immune system is under stress.

I also had unsafe mercury filling removal (while I was in the midst of the worst of the Graves Dz. in 2005) so I was already hyper-immune. I haven't been the same since RAI and I think this all just layers one on top of the other.

I agree 100%. Its several factors which play a role......not just one incident. As each thing stresses the immune system furthur more and more things begin to pile up..so in the end you have several layers/issues contributing to the illness.

My Dr.'s have all stated that the "event" which precedes the onset of symptoms usually gets the blame for everything....but in reality things are piling up for some time. Eventually the immune system becomes overwhelmed....so the "event" (in your case RAI) is actually the straw that broke the camels back.....but typically there are problems underneath that which were already causing stress...although not yet to the point where the immune system wasnt handling it all.

I'm considering mercury detox, but that will require major research on my part as I know that can be very complicated and dangerous if not done correctly. I have no doctor willing to address ANY of these issues.

For me the hardest part was finding good doctors. I had to totally go outside of mainstream medicine and these past couple years have been good ones for me. I've improved quite a bit but still nowhere near where I need to be...but as I've said...we havent yet focused on treating my gut. The first full year was mostly involving testing to rule things in/out as well as doing some mild things to improve detoxification and strengthen my immune system. At that time I was not tolerating anything in the way of supplements or anything else. I was pretty much a "universal reactor".

I did have a total of 6 months chelation which went well. I agree that this type of treatment requires alot of knowledge and experience on the part of the doctor and noone should go into it without having done plenty of research and testing to determine metal toxicity. Mercury toxicity is particularly difficult to determine in testing....mainly because it "hides" in the body as in many cases is not seen in the tests. I did multiple tests using several different methods to determine the extent of mercury toxicity.

Anyways, mercury did appear to be a significant problem but there was not enough improvement with chelation therapy to warrant furthur treatment (at least for now). A more recent test showed mercury NOT to be the cause of my toxicity....although it still may have been an issue or a "trigger" for the problems which developed after my dental work.

I had so many things which ocurred in a short time frame. Unsafe amalgam removals, the placement of dissimilar metals in my mouth, antibiotic treatment, large amounts of stress, not enough sleep, a job promotion which increased stress levels, Graves Disease, poor diet, RAI treatment, possible exposure to Lyme??, a very bad break-up while I was already ill, excessive smoking, financial stresses because I was off work on disability, more antiobiotic treatments, steroid treatment, lots of prescribed drugs (including NSAIDS), root canal (which was later extracted), etc, etc.

One of my Dr.'s said that any *one* of these things could have been enough to cause health problems but with all of these things occuring in a short time my immune system kept getting knocked down without ever having the chance to recover. It got to the point that too many problems piled up and recovery was no longer possible without alot of intervention.

With hairloss being your only symptom I dont know that you were/are headed down the same path that I went down?? It could be related to a deficiency, yeast, or some other imbalance in your body. I dont know what led you to be tested for the food intolerances but with the results of that and already having one autoimmune disease its good that you're looking into things before other problems develop. Persistent yeast infections indicate something is not right in the body.

Most people with DQ1 are having complaints of neurological symptoms (I had alot of them). At this point it doesnt appear that your symptoms have reached that level.....so hopefully with what your doing you will never experience it.

[ShayFL]

Low Ferritin (iron stores) can cause hairloss. I have read they need to be at least to 40 before hair starts growing back. Have you had that tested?

[trcn]

Rachel, your information is so helpful to me. I think the yeast is the biggest issue at this point. It may be completely resulting from mercury toxicity and it may be the root of my other issues. But, I do have 2 genes for gluten sensitivity that apparently kicked in when my system went wacko. I guess DQ1 is a mystery, then. It seems I fall right in line with the majority that you polled. I'd love a link to that thread, if you get a chance.

When I gave up gluten 4 months ago my hair texture changed to baby soft and flat and increased in shedding. I was surprised by that. So there is some connection there.

I feel I did have some mild neuro symptoms that I always attributed to thyroid (tingling hands). My dad has MS, so I always worry about that hitting. It's so hard to watch.

Also, I feel pretty poorly since giving up casein and soy this week... lots of time on the couch, queasy. Is this related?

ShayFL, I had ferritin checked 2 yrs ago and it was 59. I don't know what it is now, but I suspect it is pretty low considering that I have other nutritional deficiencies, worst being Vitamin D. I feel like hair loss could be from that, low B12, and/or low ferritin. I'm on a wild goose chase. Thanks for your input.

Tracy

[nora-n]

I must have missed the DQ1 thread!

I think I am DQ1 so I kinda follow the subject.

I cannot have yeast or milk besides gluten, nor citric acid. Daughter sleeps three days if ingesting traces of milk.

The other DQ1 people are at the braintalk and neurotalk forums, and they tend do have glutena ataxia or neurological symptoms.

Itf you google for Hadjivassiliou, he found that 20% of his gluten ataxia patients are DQ1 and he found antigliadin antibodies in the nervous system or somewhere, it was certainly not in the gut but somewhere else the gut doctors do not look. They refuse the gluten ataxia idea and have come with personal attacks towards the doctors that say glutena ataxia exists, see this article:

Open Original Shared Link

Just a short time ago someone here posted that she got an official diagnosis with DQ1 and was told there were only two officially diagnosed with DQ1 before. But I remember someone else posted a year or two ago that she ahd had a diagnosis for years but then had a gene test and then she lost her diagnosis. One should count her and the others that lost their diagnosis like that in too I think.

Anyway, I found some pubmed references for other diagnosed DQ1 too.

I think it was this thread about DQ1: Open Original Shared Link

[Rachel--24]

Itf you google for Hadjivassiliou, he found that 20% of his gluten ataxia patients are DQ1 and he found antigliadin antibodies in the nervous system or somewhere, it was certainly not in the gut but somewhere else the gut doctors do not look.

When the GI Dr.'s are running their tests....they are looking for Celiac Disease specifically. A person can have leaky gut and as a result the immune system is producing antibodies (since gluten would be recognized as "foreign" in the bloodstream) but this is a completely different situation then Celiac Disease.

In my opinion those with DQ1 may be more susceptible to leaky gut (for whatever reason) and the gluten intolerance is a consequence of that. Since the condition is not the same as Celiac the immune response is not ocurring in the gut (as it does with Celiac).....instead the immune system is responding to undigested gluten which has left the gut and entered the bloodstream. Its the same scenario with other other food proteins such as dairy, soy, eggs, etc....leaky gut allows those foods to leave the gut and enter the bloodstream undigested.

Under normal circumstances gluten, other foods, toxins, bacteria, parasites, etc. would not pass through the gut wall...they would not have access to other areas of the body. Its only when the gut is leaky that this becomes a problem which ultimately can lead to autoimmunity.

Possibly every person that I've come across with DQ1 and gluten intolerance.....also has other food intolerances (usually lots of them) which is more indicative of leaky gut. The symptoms are more neurological (although there may also be some GI symptoms) and they generally do not solve their health issues by eliminating gluten alone. The DQ1 symptoms are described as being more "severe" in some ways worse than those with DQ2 or DQ8....but really in my opinion its comparing apples and oranges. We're comparing two different conditions....which is why its rare for a person with DQ1 to be diagnosed with Celiac.

Here's the links to a couple gene threads I started in the past.

Open Original Shared Link

Open Original Shared Link

[gfpaperdoll]

trcn, you have two copies of the exact same gene - not good. Your father had at least one & your mother had at least one that they passed to you. They could also have another gene each. If they only have one gene they have a 50% chance of passing that gene to you. If they have two genes each they will pass one of those genes to each child.

If I were you I would not eat dairy or soy & keep updated on the gene studies that they are doing. Heck, you might even email Dr H. (looooong name) & he might want you in one of his studies. I have never seen anyone with your combination of genes. Also, I would email Enterolab & ask them to put you in touch with anyone else that they have tested that have that gene combination. & yes, most of us DQ1ers post on the gluten intolerance boards on brain talk & others...

yes, all us (at least the ones I know) double DQ1 people have problems with other foods & usually have neurological symptoms that seem to be mostly tied to gluten. our other food intolerances gives us various other problems. for me the dairy = ear aches & sinus problems.

"we" think that gluten intolerance is the huge umbrella with celiac as a tiny part under that umbrella.

IMO considering the people that I know with double DQ1, we do not get the gut damage until we are at the end stage of gluten intolerance - & most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long. I was just talking to a gluten-free friend yesterday. all her extended family is gluten-free & her parents in their 80's have been gluten-free for over 20 years & they are all double DQ1.

[Rachel--24]

IMO considering the people that I know with double DQ1, we do not get the gut damage until we are at the end stage of gluten intolerance - & most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long.

If people with double DQ1 die before they ever get villi damage....isnt it possible that they actually never WOULD get villi damage??

I only have one copy of DQ1 but I'd bet everything I own that I'm going to die before I ever get the villi damage seen in Celiac Disease. I think it would be a pretty safe bet too.

yes, all us (at least the ones I know) double DQ1 people have problems with other foods & usually have neurological symptoms that seem to be mostly tied to gluten.

There is a board member here now who is double DQ1...and *was* extremely senitive to gluten...UNTIL she got to the root of her problems (Lyme Disease, parastites, metals, etc) and now she eats gluten without issue...and with no significant additional food intolerances. Its all about healing the gut.

If Celiac is not the problem and you simply remove every food that you become intolerant to....until your down to the basics....the *root* problem remains. So of course, we will die from issues that might develop as a result of leaky gut....including cancer, autoimmune disease, etc. I wouldnt tie it all in with gluten though.....especially since most of the DQ1'ers I know of who post on a regular basis have been gluten free, soy free, dairy free, corn free, etc...for years now.....and still cannot say that they've completely restored their health.

Removing the foods can reduce symptoms but for true healing to take place sometimes we need to do more than that. It doesnt make sense to me when people have been gluten free for ages and yet their ongoing (and sometimes worsening) neurological symptoms are blamed on gluten....even though gluten is long gone from the diet.

I only have one DQ1 gene. I also have DQ3 and some would say that these are "gluten sensitivity" genes...therefore gluten must be the problem if I became ill.

If that were truelly the case my health would have improved immensely during the 3 years that I was gluten-free.....however, that did not happen and I still had many additional intolerances. I've now been back on gluten for about 6 months with the help of digestive enzymes and my symptoms are unchanged. I am not any worse...nor am I any better. I still have my gut infections (and other issues) which require treatment.

Without the enzymes I do suffer symptoms....however, this is not limited to gluten consumption. The enzymes help me with many foods....including dairy, meat, veggies, etc.

Our bodies are actually very good at healing....BUT....if things which are preventing recovery are left untreated....then the healing generally doesnt take place. In those cases we must remove all problematic foods in order to reduce symptoms....it doesnt "fix" whats broken but it reduces the amount of antigens in the system....therefore there is less burden to the immune system and less chance for autoimmune disease.

Honestly, I havent seen any evidence or any type of research to indicate that those with double DQ1 will eventually get villi damage....if they dont die first.

On the other hand I am seeing evidence that those with DQ1 seem to become gluten intolerant as a result of other underlying issues. I'm also seeing that those with DQ1 have many food intolerances which is the most common symptom associated with leaky gut. I'm also seeing that those with DQ1 dont recover after removing gluten alone.

On the other hand....those with Celiac (who do not have additional problems/leaky gut) heal quite efficiently when gluten is removed from the diet. Clearly, if gluten is the main problem the body is capable of repairing itself when the problem (gluten) is taken away. There is no longer any stress to the immune system...there is no longer damage occuring and as a result the body heals itself.

When we go on for years and years without healing.....there is a reason that the body is not able to repair itself. After years of being gluten free....we cannot logically say that gluten is the cause for that.

[Rachel--24]

Isnt it possible that those unrecognized gluten "sensitivity" genes (such as DQ1 and DQ3) could indicate that people with these genes are more susceptible to leaky gut?

Afterall....no lab in the US (other than Enterolab) is recognizing these genes as being gluten "sensitivity" genes.

Of course EVERY person with (or without) symptoms who has gene testing with Enterolab is guaranteed to have either Celiac genes or "sensitivity" genes. We ALL have these genes.....save for a small percentage from asian decent.

With leaky gut being an epidemic now (thanks to overuse of antibiotics, birth control pills, chemicals, mercury fillings, etc) anyone who is suffering from this condition (no matter what the cause) is going to have antigliadin antibodies detected in the stool. They are likely to also have casein antibodies, soy antibodies, etc. In my opinion Enterolab is diagnosing leaky gut in most cases.

The most problematic food proteins are the ones which are most difficult to breakdown....and these are the ones that more commonly will trigger immune responses when entering the bloodstream. So Enterolab is "diagnosing" these food intolerances...yet this still doesnt explain to the patient *why* the gut is leaky in the first place.

In some cases gluten or casein or soy may be the actual cause for the leaky gut.....but in those cases when those foods are removed there is healing. We dont go on and on with having to eliminate more and more foods....and still dealing with symptoms which would indicate that the gut has NOT healed.

In my opinion it seems likely that those who have these non-celiac genes have susceptibilities to other factors which are known to cause or contribute to leaky gut. In the thread I had (which focused mostly on DQ1)....it seemed that mercury was a common problem.

So just because people with these genes may end up with gluten intolerance....where are the studies which actually identify gluten as the primary causative factor?? How do we know that *something* else isnt responsible for causing the gut to become leaky in the first place??

Now, if we were all recovering very nicely after removing gluten from the diet....obviously there would be no question as to what the cause is....but unfortunately we dont see this happening with the DQ1 people.

[trcn]

trcn, you have two copies of the exact same gene - not good. Your father had at least one & your mother had at least one that they passed to you. They could also have another gene each. If they only have one gene they have a 50% chance of passing that gene to you. If they have two genes each they will pass one of those genes to each child.

If I were you I would not eat dairy or soy & keep updated on the gene studies that they are doing. Heck, you might even email Dr H. (looooong name) & he might want you in one of his studies. I have never seen anyone with your combination of genes. Also, I would email Enterolab & ask them to put you in touch with anyone else that they have tested that have that gene combination. & yes, most of us DQ1ers post on the gluten intolerance boards on brain talk & others...

yes, all us (at least the ones I know) double DQ1 people have problems with other foods & usually have neurological symptoms that seem to be mostly tied to gluten. our other food intolerances gives us various other problems. for me the dairy = ear aches & sinus problems.

"we" think that gluten intolerance is the huge umbrella with celiac as a tiny part under that umbrella.

IMO considering the people that I know with double DQ1, we do not get the gut damage until we are at the end stage of gluten intolerance - & most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long. I was just talking to a gluten-free friend yesterday. all her extended family is gluten-free & her parents in their 80's have been gluten-free for over 20 years & they are all double DQ1.

I can honestly say I am pretty darn afraid of: " most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long. "

Who is the doctor with the long H name that I should contact? I will, definitely. Thanks for your opinion. I am off gluten, casein, and soy. I am through the withdrawal i was feeling, too. That was yucky. Now what? Check for mercury toxicity? Lyme Dz?(my daughter had, by the way), parasites? Where do i start?

I will also contact Enterolab.

Tracy

[trcn]

[nora-n]

I got better from eating gluten-free, so maybe I am not DQ1, but the neurological symptoms from gluten fit with DQ1. Must get me tested somehow but I do not know how to ship a sample from europe. I am not so far from the airport either. How do you do that over in the US? We usually only use regular mail for shipping and if we order things from the U.S. they use some kind of shipping firms that are not mail and it is very very expensive for us, plus we pay handling and customs and customs handling and the lot on top of that. Much easier with mail...(just venting) but we cannot ship samples to enterolab by mail.....

Here we have two kinds of celiacs or gluten-sensitive persons, the normal ones eat this almost-gluten-free wheat starch and the minority get sick from wheat starch.

I cannot have this wheat starch. The celiac society here is not interested in making more naturally gluten-free items available. I have talked to them. On the forum they say that those that cannot handle wheat starch must be allergic or something and not celiac......reminds me of this DQ1 question. Could be those not tolerating wheat starch have DQ1 as well.

They use this commercial DQ2 and DQ8 test kit here so we cannot get tested for which other genes we have. (even in the research lab, where I was tested) (maybe they can, I phoned them to ask what they tested, and what my genes are, and they said talk with your doctor, but my doctor has made his mind up that it is all in my head so I never found out if they can test my actual genes, being the research lab for celiac testing.) (Rikshospitalet Oslo, type in Sollid Group in google where there is more about the research)

nora

[linda7276]

Hi Tracy,

Please see my test results at the bottom. I am double DQB1 and have been sick for 40 years. I also had/have (because she is still my sister) a sister who died in her young 40's, 5 years ago from MS. I have struggled with weakness, fatigue, tremors, hair loss, and a multitude of other symptoms for years. My sister was 2 years younger than me, and we both had symptoms, mine started in high school, well actually I'm sure as a child I was very very thin, the runt of the family, if you will, but anyway I began to notice my legs were weak in high school, honestly I thought everybody's were. When my sister was diagnosed with MS in her 20's I thought sure that I was next. Talk about scared...I quit smoking, started be very careful about what I ate, kind of a joke really, all that whole grain...no wonder nothing made me better, I was always eating the cause. Sorry to be so longwinded.

When I read your symptoms I wanted to talk to you immediately. I have a couple of links to Dr Mercola's site about mercury removal too, that you might find helpful.

Open Original Shared Link

Open Original Shared Link

I'm new at this forum and have been reading like crazy to learn as much as possible, since my test results a little over a week ago, and last night I came upon your thread. Of course, I didn't sleep well after reading some of the comments.

"That being said.....in all of my time on this board (as well as others) I have not seen anyone with DQ1 clear up their health problems with a gluten-free diet alone. I'm not saying it cant happen....I just havent seen it and I have seen plenty of people with these genes. I, myself have the DQ1 gene."

Especially that one from Rachel. I felt like the rug was ripped out from under me, and OMG....of course, if it's true, then it's good to know, but for the first time in my life I had the HOPE that I would get better, and that was hard to read. I have been much better off of the gluten, I have energy that I've never had before, but I am also allergic to Soy, and I have already planned on seeing a food allergist to be tested. Does anyone know about kits or ways to do it online. I've lost so much faith in doctors, the thought of going makes me ill...

Rachel I'd like to know more about this too, so any links to other threads or other information you might have I also would appreciate. Or anyone has for that matter. I'll try to find the brain forum, I've read about here too..

Rachel, I also want to say that I'm sorry you've suffered so much.

I am going to call Entero Lab today and request a phone consult regarding my test results and I would also like to know that Dr H.

I'm so thankful for this forum, I have never been one to get involved on message boards much, but it's so nice to finally be able to talk to other people who UNDERSTAND what this is like....thank you for this forum. I know I have more questions, but I wanted to let you know Tracy that I too have the double genes, and hair loss.

[linda7276]

I got better from eating gluten-free, so maybe I am not DQ1, but the neurological symptoms from gluten fit with DQ1. Must get me tested somehow but I do not know how to ship a sample from europe. I am not so far from the airport either. How do you do that over in the US? We usually only use regular mail for shipping and if we order things from the U.S. they use some kind of shipping firms that are not mail and it is very very expensive for us, plus we pay handling and customs and customs handling and the lot on top of that. Much easier with mail...(just venting) but we cannot ship samples to enterolab by mail.....

Here we have two kinds of celiacs or gluten-sensitive persons, the normal ones eat this almost-gluten-free wheat starch and the minority get sick from wheat starch.

I cannot have this wheat starch. The celiac society here is not interested in making more naturally gluten-free items available. I have talked to them. On the forum they say that those that cannot handle wheat starch must be allergic or something and not celiac......reminds me of this DQ1 question. Could be those not tolerating wheat starch have DQ1 as well.

They use this commercial DQ2 and DQ8 test kit here so we cannot get tested for which other genes we have. (even in the research lab, where I was tested) (maybe they can, I phoned them to ask what they tested, and what my genes are, and they said talk with your doctor, but my doctor has made his mind up that it is all in my head so I never found out if they can test my actual genes, being the research lab for celiac testing.) (Rikshospitalet Oslo, type in Sollid Group in google where there is more about the research)

nora

Nora I used Entero Lab and they have you send in your specimen via UPS. It comes with all of the instructions and is sent overnight....hope that helps you. Linda

[trcn]

Hi Tracy,

Please see my test results at the bottom. I am double DQB1 and have been sick for 40 years. I also had/have (because she is still my sister) a sister who died in her young 40's, 5 years ago from MS. I have struggled with weakness, fatigue, tremors, hair loss, and a multitude of other symptoms for years. My sister was 2 years younger than me, and we both had symptoms, mine started in high school, well actually I'm sure as a child I was very very thin, the runt of the family, if you will, but anyway I began to notice my legs were weak in high school, honestly I thought everybody's were. When my sister was diagnosed with MS in her 20's I thought sure that I was next. Talk about scared...I quit smoking, started be very careful about what I ate, kind of a joke really, all that whole grain...no wonder nothing made me better, I was always eating the cause. Sorry to be so longwinded.

I'm so thankful for this forum, I have never been one to get involved on message boards much, but it's so nice to finally be able to talk to other people who UNDERSTAND what this is like....thank you for this forum. I know I have more questions, but I wanted to let you know Tracy that I too have the double genes, and hair loss.

Hi Linda. Thank you for your message. I am very sorry about your sister. My father has been suffering with MS for 20 yrs. I have no answers, for sure. I do know that if you are sensitive to gluten and soy, you are probably sensitive to casein, too. I believe as Rachel says, that we will keep developing sensitivities until the underlying issue is resolved and the gut it healed. I actually hope mine is mercury so that I can address it. I don't know what else it can be. I have minimal neuro symptoms: occasional tingle in hands and feet.

I emailed Dr. Hadjivassilion and his response was:

Thank you for the e-mail. I am not an expert on HLA as such but what I do know from our studies is that those meurology patients with gluten sensitivity that do not have the HLA DQ2 or DQ8 have the DQ1.

Hope this is of some help

Marios

meurology = neurology??? But it was nice to get a response from him re: double DQ1.

Thank you for the links. I will check them out. Let's stay in touch. PM me if you want. From where are you?

Tracy

[linda7276]

Thank you. I had RAI in 2005 and have also tried everything under the sun to relieve my symptoms. I am regulated at 3.5 grains of Armour Thyroid and seem to be doing very well. Hair loss has never stopped and seems to be more related to the food intolerances at this point (?). I am at a great weight and have no symptoms, besides HAIR.

I too had 4 months of tetracyclene after a reaction to iodine (hello, thyroid!) caused acne-like lesions on my face and kept erupting. Anyway, I was a walking yeast infection with no relief given any amount of Diflucan, probiotics, etc. I finally quit the Tet as the yeast was unbearable. This was 2006. I know I have candida issues as I always have yeast present (description withheld intentionally).

I also had unsafe mercury filling removal (while I was in the midst of the worst of the Graves Dz. in 2005) so I was already hyper-immune. I haven't been the same since RAI and I think this all just layers one on top of the other. I am trying to heal my gut at this point, except eating yeast -free is extreeeemely difficult for me given no gluten, casein, or soy too. I'm considering mercury detox, but that will require major research on my part as I know that can be very complicated and dangerous if not done correctly. I have no doctor willing to address ANY of these issues.

Ok, thanks again. And anyone who can comment on the Genetic aspect of my results... I'd be very grateful.

Tracy

Hi again Tracy, have you tried eating chicken soup. I have been eating that a lot since my test results, and I feel great. I read a book called Nourishing Traditions by Sally Fallon and Mary Enig, about how healing bone broths are for the sick, I see that your only symptom is hair loss, but who knows what kind of silent damage is going on inside the body. I cook the soup on low all day, then let it cool, and refrigerate it overnight, in the morning I spoon off any fat, add my veggies, and let it cook some more, no noodles of course, but you could add basmati rice if you want, or gluten free noodles...anyway it seems to be healing for me. In fact...I ate nothing but soup last week and some fresh spinach/romaine salads with good olive oil and I felt great, then this week started introducing more foods and my stomach isn't liking it, so today I am going back to the soup. The thing about the broth is it has all of that good stuff from the bones, and it's already broken down so it goes right into the body and does it's stuff. Just a thought. Good luck to you... Linda

[linda7276]

On the other hand I am seeing evidence that those with DQ1 seem to become gluten intolerant as a result of other underlying issues. I'm also seeing that those with DQ1 have many food intolerances which is the most common symptom associated with leaky gut. I'm also seeing that those with DQ1 dont recover after removing gluten alone.

Can I ask where you are getting this evidence Rachel? I need all the help I can get. I have noticed a huge difference since stopping the gluten and the soy...huge!! But of course, I am going to be checked for other food allergies. Another thought that comes to mind for me is that most of us have been sick for a long time, and yes the body does have remarkable healing capabilities, but cells regenerate at different times and cycles, so it can take a long time to make a full recovery, I'm thinking that since I've been sick for 40 years, that I now have to give my body time to recover, and regenerate.

I see that you went back to eating gluten, even with the enzyme I have to wonder about that, since there is so much documentation about silent damage, in addition to the obvious damage. Is it possible that you didn't give your body enough time to fully recover? After reading some of your posts just here in this thread, it's very obvious that you have been very ill. And I do think you make some excellent points in that maybe gluten isn't the ENTIRE problem, but when I read that you went back to gluten, it sounds like you've given up....to some extent. I don't know you, so of course I don't know, and certainly I haven't read enough here but that strikes me as curious. And I wonder if that was a good idea... Linda

[nora-n]

Hi, I am doing fine on ldn 3mg and gluten-and milk-free. Google LDN, low dose naltrexone)

There is much info all over the internet about ldn helping for MS and other autoimmune issues.

I think I have fibromyalgia (not diagnosed) and I have hashimoto's but the ldn takes all the symptoms away and I am fine yet being a little bit uder-dosed on thyroid meds. I think ldn takes away the antibodies so I feel more like my old self.

The MS patients on the ldn forums and yahoo groups are gluten-and milk-free as that seems to be necessary. Those that do not respond to ldn are said to really have lyme disease.

nora

[Rachel--24]

Can I ask where you are getting this evidence Rachel?

I guess I'm someone who is just very curious about everything. I love to research, I love spending time with my doctors, I love asking questions, etc.

I've spent a great deal of time on this board (and others) over the past few years and as a result I've gotten to know alot of people, I've read thousands of posts, responded to thousands of posts, etc.

I also read alot about DQ1 on the braintalk forum. When I say that I havent seen anyone with the DQ1 genes resolve all of their health problems by removing gluten alone....I'm basing that on what I have witnessed during my time on these boards.

Many times I can recognize from initial posts which people will do fine and heal nicely on the gluten-free diet...and which ones will continue to have problems (as I did). Its just my own observations. I've learned alot from the experiences of others. I've researched many topics...so my time spent here hasnt just revolved around gluten intolerance itself....but also some of the underlying conditions commonly associated with food intolerances.

As far as the genes go....I honestly dont spend alot of my time looking into the various genes. I understand which genes are known to trigger Celiac in the vast majority of cases....I understand that I dont carry those genes and beyond that I dont get too into the "sensitivity" genes....since they are not recognized at this time. I have not seen any *clear* evidence that people become intolerant to gluten as a result of having a gene such as DQ1.

From what I have witnessed here on these boards....its the ones with these genes who actually dont resolve their issues by removing gluten alone. There are usually multiple food intolerances and the more foods eliminated the better we may feel....but underneath that....the problem which has led to all of this remains. I believe that in most cases that problem is leaky gut.....and unless that problem is addressed (which means identifying the factors still contributing to inflammation)...the health problems do not resolve completely.

Its just something I've observed and it has kind of "stuck" in my mind...since I also have DQ1. I suppose I have made a "mental note" that in all this time I have yet to see someone with this gene recover on the gluten-free diet alone.

I'm not sure about the original poster in this thread since she is not having symptoms other than hairloss at this time. Most of the people posting have more severe symptoms and lots of food intolerances....so those are the ones I'm used to seeing here. I'm sure there are plenty of DQ1's in the world who are very healthy. I'm only basing my opinions on what I see as far as people who have gluten intolerance/health problems/additional food intolerances and do not actually have one of the Celiac genes....but have DQ1 instead.

I'm sorry if my posts gave you the feeling of having the rug pulled from beneath you.....of course that is never my intent for posting. Just wanted you to know that.

I do understand how good it feels when we find the "answer". I've been there more than once....and I do recall feeling that way after receiving my Enterolab results.

While its obvious that some of us with DQ1 are susceptible to developing gluten intolerance....there is no clear evidence to show that DQ1 actually *triggers* the gluten intolerance. To me that part is important....especially since I'm not seeing that removing gluten is the complete answer in the majority who have DQ1 (I dont know of anyone but I will use the word "majority" in case there may be some cases out there where health has been restored while gluten-free alone).

There is clear evidence that DQ2 and DQ8 actually play a role in whether or not a person is susceptible to Celiac Disease. These are the genes which can trigger the disease.....and we know this....there is enough scientific evidence to support this....and more importantly the diet WORKS for those people. A person with Celiac can have complete destruction of their villi and yet all of this can be reversed once the diet is implemented. We know what it takes to heal the gut when the issue is Celiac Disease.

The same cannot be said about those who have DQ1 and happen to be gluten intolerant. We do not know that gluten is the primary issue in these cases. There are additional food intolerances and healing requires more than the gluten-free diet alone. We do not know what it takes to heal those with DQ1...or any other gene which is not DQ2 or DQ8.

I see that you went back to eating gluten, even with the enzyme I have to wonder about that, since there is so much documentation about silent damage, in addition to the obvious damage. Is it possible that you didn't give your body enough time to fully recover?

No...its not possible that I didnt give my body enough time to heal. Its also not possible that the damage was caused by gluten alone.

I have not been sick for a lifetime...only 5-6 years now. My symptoms came on very rapidly and with alot of intensity. Prior to that I was never sick...I was in good health (as far as I knew). There were numerous things that occured in a short time which might have contributed to the decline in my health...I cant blame one thing. Typically, when we lose our health in this way there are multiple factors involved. My immune system had to be struggling with many things....gluten being just one of them.

My problems did not resolve on the gluten-free diet...or even after I eliminated most foods. I tried several elimination diets and for quite some time now my diet has been extremely limited. At one time it was only 2 foods that I was eating.

I had positive Enterolab results but to be realistic about it...I wasnt getting better. Just because one lab result shows a problem with one food....doesnt necessarily mean that my problems *originated* from that food. Also, these food intolerance tests arent considered to be diagnostic. Enterolab cannot diagnose a condition...the results were telling me that I was sensitive to gluten...thats it.

I'm sensitive to thousands of things now...literally....so if removing gluten didnt resolve my problems....for me it seemed the next logical step would be to continue searching for an answer. So thats what I did.....however, I *did* remain gluten-free for a full 3 years. It was best for me to eliminate or reduce exposure to anything which might be contributing to inflammation/symptoms....so that included most foods, chemicals, molds, etc.

I feel that underneath it all my immune system is still very strong. If my body had a chance to recover...it would have. My body is still struggling with the underlying issues and that is why my health problems have been ongoing. I'm still young...its not even an option for me to wait years and years to see if my body will heal eventually. My body is telling me with these ongoing symptoms that things are not OK....things are not resolved and nothing is going to change if I dont do something to change it. I've chosen to listen to what my body is telling me.

There is still damage going on...I dont feel that at this point my body is keeping anything from me. Yes...during those years that I felt healthy....there were things going on that I wasnt yet aware of...because I was not affected by anything. But once I lost my health, there has been nothing "silent" going on. My body responds negatively to things that it cannot handle. I feel inflammation from certain chemicals, from molds, from MANY foods.....I've already crossed my threshold so anything that is not good will provoke reaction. I only eat what I can tolerate.

Malabsorption was a huge issue for me and my score was high with Enterolab. I had lost 25 lbs....and I'm a small girl to begin with. Gluten free did not touch that problem......my malabsorption didnt improve until much later when I figured out what things were contributing to that. My weight has been stable for a couple years now. Consuming gluten now has not had an effect on this....however, the same foods which caused it back then...still have the same effect and still need to be avoided.

These are foods which are high in phenol compounds and foods that are high in oxalates. Chemicals that (under normal circumstances) are broken down and eliminated before they cause the body any harm. If this process is impaired.....damage occurs as a result of these chemicals accumulating in the body. So, by avoiding those I have less inflammation, better brain function, better GI function and better health overall.

After reading some of your posts just here in this thread, it's very obvious that you have been very ill. And I do think you make some excellent points in that maybe gluten isn't the ENTIRE problem, but when I read that you went back to gluten, it sounds like you've given up....to some extent. I don't know you, so of course I don't know, and certainly I haven't read enough here but that strikes me as curious.

Certainly it may appear that way to someone just reading my posts for the first time. Here I am....having been real sick and yet I have abandoned my gluten free diet. So yeah...I can see how you might be curious.

Since you dont know me I'll explain.

I'm definately not one to give up...EVER. I'm definately not a quitter.

Giving up on my health is not an option for me....it never has been. I'm someone who is very determined...I dont feel sorry for myself. I have had the opportunity (through this illness) to learn so much in a short time. My life has changed for the better....my food choices may have diminished beyond anything I'd ever imagined....but I have also gained PLENTY. So despite everything I have alot to be grateful for.

I'm working with amazing doctors...so I do have a good understanding as to some of the things going on in my body. I had some pretty horrible experiences with Dr's for the first few years of my illness...but eventually my luck changed....(or more likely my prayers were answered)....and I ended up with some of the best around. So I'm not going about things blindly. I'm under the care of excellent Dr.'s....and at this point it has become clear that gluten isnt nearly as harmful to me as some of the other foods...including the gluten-free grains. So with the enzymes I'm doing OK with eating gluten....it has not worsened my condition.

Since I do react to most foods....and I do have to eat...I have to choose the foods which cause the least amount of stress to my body. If gluten is causing stress...it pales in comparison to some of the other foods....so I would definately choose it over something that causes obvious stress/symptoms. Again, I think its most important to listen to my body.

Also, I've done really well this past year. I've made more improvement this last year than the first 4 years put together. The first 2 years I was on disability. The last 3 years I've worked fulltime......but I didnt actually start feeling that I was getting my life back until this past year.

The ones that have been here awhile know that there was a time that I was pretty isolated because of my sensitivities and because my symptoms were so severe...it kept me from participating in life. This past year (and especially the last 6 months) I've been doing all of the things I wasnt able to do 2 years ago. I've been living a pretty normal life....except for the fact that my diet is very restricted still. Other than that noone would know that I'm any different than I was when I was totally healthy.

I'm not "better"...the problems are still there. I've just learned how to "manage" them. I know what to eat and what not to eat. I know that I have to avoid chemicals, I eat organic as much as possible, I eat organic grass fed beef over grainfed, I've had my fillings removed, I've done everything I can to help my body by reducing the exposure to toxins. In no way are my problems resolved....they are still there....my body cant heal until the main problems are dealt with.

So I work on my health constantly....its like having another full time job. The thing is I love to research, I'm fascinated by alot of it. One of my doctors is out of state....I look forward to her visits like I'm going to Disneyland. Sometimes I forget that I'm the patient and that I'm still sick because I just enjoy sharing and learning (you can see evidence of this in the OMG thread...which is over 2000 pages long now).

My goal has always been to make a full recovery....but in the process I found new goals. I found a new interest. Eventually, if I'm lucky I'll be helping people the same way my doctors are helping me now. Having actually gone through it myself I hope that I'll be able to give people some hope.

Right now I try to help people here in the only way I know how...which is to share my experiences.

All of my doctors treat autism....one of my Dr.'s primarily works with autistic kids. Many of the problems are the very similar.....I learned that early on in my research. Alot of what has worked for me I learned by studying Autism...and I share alot of that with my Dr. We are kind of working together on this "puzzle"....not only to get me better....but to hopefully get some of these kids back on track as well. I'm an adult, fully capable of communicating what I'm feeling, what works and what doesnt work, which foods/chemicals are bothersome...which ones arent. I'm able to research (now that I can think clearly) and I'm able to pinpoint what things trigger certain reactions. Most of the kids displaying the same symptoms/issues are nonverbal....so they cant communicate any of these things.

I work hard to get answers....not just for myself but for anyone else who might benefit....because I know I'm not the only one dealing with this.

So yeah....I may not know everything....but I do know that I'm not a quitter.

I think most people here would agree with me on that...even if they dont agree with anything else I have to say in my posts.

[Rachel--24]

I'd like to contact this member. Would you link me to her/him?

CarlaB....you can find alot of her posts in the Lyme Disease thread...as well as the OMG thread.

I started the OMG thread over 2 years ago....it was just a normal thread and at the time I kind of felt like I was only one who was so bad off with the food intolerances. Noone else seemed to have such severe problems after gluten-free.

I definately wasnt alone because many people joined me in that thread....it became a place to share, learn, and give/get support.

I was never someone to "accept" that this stuff just happens....or that I would have to continue my life feeling the way I felt. I always felt that there were answers...even if they're not always easy to identify.

Anyways, many topics have been discussed in that thread....many people have found answers while testing for underlying issues. Most people are being treated for those things...probably the biggest one was Lyme. Nearly every person who was properly tested was positive for Lyme (it may have been EVERY person....but I lost track).

I think every person who ended up getting tested also felt that there was no way that they could have Lyme.

Noone has had just *one* single problem....its never that simple. The immune system is pretty capable of handling things UNTIL there is just too much to handle...so thats when things start to get bad. So Lyme can be a primary issue but along with that there are a mulitude of additional problems which have developed over time as the immune system becomes more and more burdened.

CarlaB tested positive for Lyme....she has been aggressively treating that (along with other things) and she no longer has problems with gluten. She treated some of her gut infections.

I have no idea how many people posting in that thread have the DQ1 gene because not everyone has had genetic testing. I know of at least one who has two Celiac genes...so no DQ1 in her case.

You are only dealing with hairloss and it may or may not be a sign that you're going down a path that alot of us have gone down. I think its definately smart that you're learning about these things now. There was a time that I felt like I was healthy...I had hairloss and headaches during periods of stress....these were symptoms caused by hyperthyroidism (Graves). I didnt take any of that seriously because I felt really good 99% of the time....and my symptoms would always resolve shortly after they appeared. Never in my wildest dreams could I have imagined any of the things that would occur later on.

I feel that if I had the knowledge back then....I would not have gone down this road. But everything happens for a reason...thats how I see it. I didnt know about this stuff because I was suppossed to go down this road...life was too easy for me...I never struggled with anything...so it was definately my turn to be faced with some big challenges.

What are some examples of underlying issues? The only common denominator I have found is mercury. Keep in mind, my main symptom at this point is major hair loss.

Mercury can be an underlying issue for anyone...its a neurotoxin...its a burden to the immune system and it can be an underlying factor for pretty much any type of illness.

It was a common denominator in the thread about DQ1....but I dont know that this really means anything with regards to DQ1 specifically. Mercury is toxic to everyone.....so in most cases where people have chronic illness and are being properly assessed for possible mercury/heavy metal problems....in most cases it does prove to be a problem contributing to the unwellness.

Heavy metals are a HUGE underlying factor in chronic illness...and I dont think this is limited to people with DQ1. I think every person posting in the OMG thread has had problems with heavy metals. Its a big burden on the immune system....and mercury in particular can cause significant problems in any body system....the GI tract is definately affected by mercury's toxicity.

A toxic environment also invites infection. If the body is burdened by mercury (or any other toxin) the immune system is less capable of fighting off pathogens. In addition to that detoxification can become impaired by heavy metals and/or toxins produced by infections (such as Lyme, yeast, bacteria, etc). So the more that toxins accumulate....the more problems develop as a result...and the more problems...the more burdened the immune system can become. Things can pile up on us and then its an endless cycle that the body gets "stuck" in. Its not easy to recover from that without identifying all of the biggest factors involved.

The most common underlying issues that I'm aware of are heavy metals, chronic infections such as Lyme, parasites, yeast, viruses, bacteria, etc. I dont know of anyone (with all of the ongoing symptoms) who doesnt have some sort of infection...and its usually more than one.

Those can be the things putting the heaviest burden on the immune system but as a result there are usually alot of things which are out of balance in the body. Overtime alot of things can go wrong....the thyroid can be affected, the adrenal glands, neurotransmitters, hormones, digestive system, detoxification can be impaired, liver and kidneys can be burdened, and on and on.

Also the more the body is out of balance the more we cant deal with the infections, we cant assimilate nutrients, we cant keep ourselves healthy...its a viscious cycle....so thats why its important to start learning...BEFORE things get to that point.

Oh yeah....root canals are another big source of toxicity in the body. The most toxic substances that we are exposed to actually come from the teeth. Root canals harbor bacteria. The bacteria learns to live in an environment without oxygen...the toxins produced by the bacteria and decaying tissue (because the root canaled tooth is dead) are actually considered to be more toxic than mercury.

So toxic root canals can have devastating effects on the immune system....the toxins can affect any and all body systems and can cause all sorts of disease.

So as far as underlying issues go...these are huge ones...and they are also the ones that noone ever thinks about.

[nora-n]

DQ1 is very common in the general population, but only a few are officially diagnosed celiac with DQ1:

Open Original Shared Link

Open Original Shared Link

Tthe DR13 and the DQA1 01* here means DQ1 (they are clever at hiding it...)

I evenhave references on DQ9 and DQ7 being officially diagnosed celiac, but the DQ9 are in Japan where DQ9 is very common and DQ7 may be very common in Sardinia, where they found the DQ7 celiacs.

In my country they only test for DQ2 or 8 so others cannot be in any statistics...

nora

[trcn]

You are only dealing with hairloss and it may or may not be a sign that you're going down a path that alot of us have gone down. I think its definately smart that you're learning about these things now. There was a time that I felt like I was healthy...I had hairloss and headaches during periods of stress....these were symptoms caused by hyperthyroidism (Graves).

Rachel, once again thank you for all of your information. I wanted to mention that I have more than hair loss as a symptom, it just happens to be the most persistent and distressing symptom (sadly) I've had throughout, as it has contributed to the general feeling that I have lost my youth to this mysterious group of illnesses.

My struggles began in 2002 with the onset of Grave's Dz and, as you probably know, there were many months where I thought i wouldn't live through it based on how I felt. It took 6 months for the Drs to figure out what was wrong with me... all the while, I was nursing thyroid hormones into my infant son who spent 6 mos screaming his head off, but that's another story. I spent years trying to regulate my hormone levels after having RAI, but it turned out I also had Hashimoto's antibodies. That, coupled with the Grave's antibodies, wreaked havoc on my system, even though I no longer had a thyroid.

My daughter was dx'd with Lyme Dz in 2004 and I wonder if I may carry it, too, as we lived in a very populated "deer tick" zone. And I had mercury amalgams removed unsafely to boot. My dad has MS (and is a dentist and obviously is DQ1). Soo lots of history behind all of this

My symptoms over the years have been neurologically based, but I thought all were attributed to thyroid: tingling hands and feet, months of extreme fatigue on and off, unreplenishing sleep, heart palps, hot flashes, mild dizzy spells. Right now, I feel pretty darn great compared to all the years of that. Again, I thought I was resolving issues with my thyroid all along when the gluten thing "hit" and now soy and casein. As you describe, more things keep developing as I resolve others. When will it end?

I just had some concern that I wouldn't be taken seriously on this board, or others if it seems my only concern is hair loss. I should be ashamed to admit that it is the one thing that pushed me to the research mode, but now that I have so much info on the amount of damage my system is carrying, I am even more worried about my health that it may seem, and am very serious about getting better.

My plan is to investigate Lyme and Mercury Toxicity as the primary sources of immune attack. As I am double DQ1, I am very fearful of developing MS like my father, especially if I also have mercury in my system as he surely does.

Thank you so much.

Tracy

[linda7276]

Dear Rachel,

I respect your knowledge, I spent the entire day reading yesterday...and it's obvious you've done a great deal of research, to which I personally say thank you, because I am benefitting from it. Here are a couple of links, that I am sure you've seen because I believe they came from this board, though yesterday, I had a gazillion pages open at the same time, so I can't swear to it. What do you think of this LECTIN theory. I have to say I was very impressed with the presentation at the wildhorse link.

The leaky gut....yes I think so too...and that is what the wildhorse presentation spoke to. I do believe they are on to something. Though he showed some of the genes and I don't think the DQB1 was one of them. Have you seen this before, and what say you?

Open Original Shared Link

Open Original Shared Link

"I'm not sure about the original poster in this thread since she is not having symptoms other than hairloss at this time. Most of the people posting have more severe symptoms and lots of food intolerances....so those are the ones I'm used to seeing here. I'm sure there are plenty of DQ1's in the world who are very healthy. I'm only basing my opinions on what I see as far as people who have gluten intolerance/health problems/additional food intolerances and do not actually have one of the Celiac genes....but have DQ1 instead."

My symptoms: the worst of all are profound and debilitating fatigue, muscle weakness, tremors, very difficult to handle stress, shake, heart pounds, etc. hypogycemia, low blood pressure, some tingling, back, neck, hand, and hip pain, fluid retention, which I am now finding is related to food...and which foods. For example, I lost 2 pounds of fluid overnight, last night, had popcorn two nights in a row, but also got glutened Monday night at the Outback, the Aussie Chips, I've since found that they have a gluten-free menu, and that they are NOT gluten-free, I asked the server and she said they cook them in their own oil, oh well, I'm sure it won't be the last time. It could have been the popcorn, too, I'll wait a while and reintroduce it and see what happens. I am on a very restricted diet and have learned to listen to my body, so I am finding out which foods are causing me problems. I hate to be so long winded, but sometimes it's necessary to explain everything.

Hair loss is also a symptom for me...I think it's related to the malabsorption, mine was 647, I remember yours was high too...in the 900's...I attribute a lot of my problems to not absorbing nutrients for probably most of my life. I was bone thin as a kid, as a younger adult, I was treated as if my problems were in my head and as if I were anorexic, I finally gave up on doctors, on top of feeling so weak and tired I coudn't deal with that. I just started to work hard on being well, and tried to put on a face to the outside world that I was normal, but I knew I wasn't.

My thyroid has always tested ok, and my labs accept for sometimes albumin levels, which are proteins, have been low and I've almost always been anemic, which doctors were always very quick to attribute to menstruation, then I had a hysterectomy, and continued to be anemic, and my doctor said we need to find out why you have this anemia...ha!! well now I know. He never did find out. Just prescribed Iron, which didn't seem to help. And I've had elevated sed rates from time to time, which is an indication of inflammation in the body. I know you know a lot, so forgive me if I'm explaining things you already know, I'm a nurse, so it goes with the territory.

My son was diagnosed at 1 and 1/2 with Juvenile Rheumatoid Arthritis, he is fine, but tired, has tremors, doesn't sleep well, complains to me of weakness, another thing that has haunted me. (I just added melatonin to my supplements).

I'm sure you read about my sister, who died after a horrible very debilitating case of MS, she lived with it for 20 years, most of those years she couldn't even feed herself. The neurologist said she had the 3rd most malignant case he'd ever seen, she didn't respond to mercury removal, experimental drugs, nothing, (even bee stings) and now I am thinking it's because "the leaky gut" set it off and that there was a gluten connection, and after watching that show yesterday on Lectin's perhaps that played a part too.

She was always anemic as a child and I remember my mother trying to get her to eat other foods besides breads and cereals. And my whole family is suffering from one thing or another. I think it's all related. I have a brother who was recently diagnosed with schizophrenia....which is all over the literature as being implicated in gluten sensitivity...other sisters who are also having neurological symptoms....so to find the answer...would be so wonderful.

"I'm sorry if my posts gave you the feeling of having the rug pulled from beneath you.....of course that is never my intent for posting. Just wanted you to know that."

Thank you, I know you didn't mean to do that, and that you are just being honest, and also that denial won't heal me, so I understand, especially after all that I read yesterday

But Rachel I do at this point in my research....believe that there is a relationship between the food that we are eating and the symptoms that we have. The "leaky gut" I believe that we all have different symptoms, because we all have different immune systems and "triggers". But in the end, and maybe it's just wishful thinking, that hopefully we will all get to the same place, where we can reclaim our lives, and our health.

I very much admire you for the research, the explanations, the persistence, in order to find out these things that is what is necessary, and I'm glad I found you and this board. I know I am ONLY going to get better it.

"While its obvious that some of us with DQ1 are susceptible to developing gluten intolerance....there is no clear evidence to show that DQ1 actually *triggers* the gluten intolerance. To me that part is important."

I remain open to receive more information....

"I had positive Enterolab results but to be realistic about it...I wasnt getting better." I don't know how to do the quote thing.

No I am not all better either. The biggest things I've noticed is the fluid retention is gone...I had about 6 pounds of fluid on me, the horrible devastating fatigue is gone, and I have ENERGY that I've never had before...never...maybe I would have a day in the past where I felt better than the day before but it was always quick to return. And it was devastating. Many days, if not most, taking a shower wore me out, had to rest after any little thing I did....I would be ok again after a rest but only to return after a job, sometimes making dinner made me so tired I hardly had the energy to eat it...so you get the idea, that is GONE...and I am so grateful.

I also have almost no back pain, or neck pain, the pain in my hands is 85% gone, the hip pain is about 70% gone.

"I'm sensitive to thousands of things now".

I read somewhere that if you do have a 'leaky gut' that it's not unusual to be sensitive to a lot of foods because they have gotten into the blood stream and the immune system has developed antibodies against them, so it's key to find out all of the foods that might be making you sick and only through eliminating them can we begin recovery. I know you know that, but I have to say it...

I think you're right about MOLD too.

"I feel that underneath it all my immune system is still very strong. If my body had a chance to recover...it would have. My body is still struggling with the underlying issues and that is why my health problems have been ongoing. I'm still young...its not even an option for me to wait years and years to see if my body will heal eventually. My body is telling me with these ongoing symptoms that things are not OK....things are not resolved and nothing is going to change if I dont do something to change it. I've chosen to listen to what my body is telling me."

GOOD FOR YOU!! YOU HAVE MY FULL SUPPORT! Not that you need it...but if we are not PROACTIVE in our healthcare, no one will be. We have to be informed, and proactive. I hope and pray that you find ALL the answers soon. I feel like my life has been robbed, though I am a young 54 and have many years ahead of me, I would have liked to have had my younger years too...

I also had 7 miscarriages, and the doctors could never understand why, now I think I do. I am so thankful that I have my son.

I too have learned to listen to my body, but I wish I had been as smart as you at your young age. I knew the doctors were wrong back then, but I didn't have a clue where to look for the answers....you are light-years ahead of where I was, and I encourage you to GO GIRL!! Maybe you will be the one to shed the answers on this whole big confusing puzzle for the rest of us.

"These are foods which are high in phenol compounds and foods that are high in oxalates. Chemicals that (under normal circumstances) are broken down and eliminated before they cause the body any harm. If this process is impaired.....damage occurs as a result of these chemicals accumulating in the body. So, by avoiding those I have less inflammation, better brain function, better GI function and better health overall."

OMG I forgot about BRAIN FOG I had word finding difficulty, memory problems, concentration problems, it was incredible, mood swings, irritability, anger....the list goes on....see it's like having a baby, you forget the pain, after it's gone. I try to keep a journal, but when you're feeling better you even forget that. I am doing so much better now with all of that...not 100%, but much better. I feel calmer. When you mentioned brain function, I had a "aha" moment. My husband tells me I am much nicer since I am off the gluten...hehe...poor guy...

Rachel please tell me more about those foods, since we do have the same gene maybe I have to get rid of them too. Phenols and oxalates.

"I'm definately not one to give up...EVER. I'm definately not a quitter."

Bad choice of words on my part to imply that you have 'given up' sorry, it's Sooooooo obvious that that is not the case. I was shocked when I read your words, esp. about not getting well. I cried for 2 days when I got my results not because I was 'gluten sensitive' so much as because I finally had something to hold onto, the hope that I was going to get well, and when I read those words, my heart sunk.

But ignorance never made anyone well and while I am going to believe for me I am going to get well, and for you too....I will keep an open mind and learn all that I can outside of gluten sensitivity...

I'm so glad you have finally found good doctors...

"If gluten is causing stress...it pales in comparison to some of the other foods.."

Please tell me more...

"The thing is I love to research, I'm fascinated by alot of it. "

Me too, I love learning, and helping people too...I think that's why I went to Nursing School.

I have read a lot of your stuff...esp. yesterday and some about your doctor that travels to you...nice...I'm glad you are having that positive experience in your life Rachel.

You ARE HELPING PEOPLE right here, right now....I'm new here and am very grateful for you!! Period! No maybe about it.

You are young...maybe you can go to medical school, I always wanted to but I knew I couldn't take the physical part of it....what about you, are you strong now?

Imagine the people you will help...wait what am I saying, don't leave us...haha....geeza louiza...what was I thinking. Nevermind!!!!

You are NOT A QUITTER....forgive my ignorance.

Rachel thank you so much for your words and I'm sorry for the book... Healing hugs to you, Linda