My Dilemma

[7-cody]

hmm... well I did the enterolab thing a few years ago. some of you guys may remember me, but I did the stool test for gluten sensitivity and malabsorption. both were positive.

Final Laboratory Report

Date: 10/23/2006

Name: Knudson, Cody

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 12 (Normal Range <10 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

For more information about result interpretation, please see Open Original Shared Link

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: Laboratories at Bonfils

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health.

PLEASE NOTE: The information contained in this communication may be privileged, confidential, and protected from disclosure. If you are not the intended recipient, any dissemination, distribution, or copying is strictly prohibited. If you think you have received this communication in error, please notify the sender and delete/discard the message.

Thank you.

those were my results, I did the malabsorption part like a year later... was positive. I don't have a copy of the results anymore.

so I tried gluten free for about 3 months, felt a lot better at first and then back to the normal extreme fatigue, brain fog, etc.. my Dad convinced me that nothing was wrong with me and that all you can do to feel better is exercise and eat better but that I didn't have "celiac" blah blah blah. After a while I just said poop it, I don't feel any better so maybe he's right and went back to normal of eating whatever I want.

fast-forward two years later and I'm feeling even worse.. every day is different

I have a appointment scheduled with a gasterontologist on June 6th... that's the soonest they can get me in. and then it'll probably be a few weeks after that before I can finally get the biopsy that I want. I told them that I just want to find out whether or not I have Celiac.

now here's my dilemma, I figure I've already been tested and I have no idea why I didn't stay gluten-free. I'm really thinking, now that I've done a lot of research lately, that if I tried gluten-free again I could really heal and feel a lot better.. I can take up to 8 HCL capsules and not feel a thing... so obviously low stomach acid is a problem for me. the problem is I want to start RIGHT NOW. get feeling better...

but at the same time, I'd love an "official diagnoses" that nobody could ignore. I want to be able to "prove" that I'm really Celiac, so to speak (which I'm pretty sure that wheat is definitely my problem whether its just intolerance or celiac). but I really don't want to spend the money and time for the appointments, let alone wait until mid June before I have a diagnoses.

what should I do? is a biopsy that important?

[Rachel--24]

Enterolab cannot diagnose Celiac Disease. As of right now we have no idea how accurate the Enterolab tests are....nothing has been published for peer review.

Since the diet didnt resolve your symptoms I think that it might be in your best interest to wait until you've had the tests done. That way you wont continue to wonder what a biopsy *might* have shown...especially if you still feel sick after you start the diet.

A positive response to the diet is a definate indication that at the very least you are gluten intolerant. However, if you're looking for a diagnosis of Celiac...you need to hold off on the diet until the testing is completed.

When symptoms dont resolve while on the diet there may be some other food intolerances contributing...there could also be another condition involved....so it might be best to look into other possibilities AS WELL as going through with the endoscopy and bloodwork for Celiac.

At this point (if I were in your shoes) I would get the tests done *before* attempting to go gluten free again. My answer might be different if you'd felt alot better when you were on the diet previously. Since your symptoms didnt resolve its probably a good idea to get the endoscopy...not only to rule Celiac in (it cant be ruled out with a neg. biopsy)...but to check for other possible conditions.

My Enterolab results were all elevated....however, symtoms persisted long after I started the diet. Malabsorption did not resolve with the removal of gluten, casein, soy, etc. I think I would have drove myself crazy if I hadnt had all of the testing for Celiac. I did have genetic testing as well as the biopsy and bloodwork. It was all negative and when my symptoms didnt resolve on the diet I knew I needed to start looking into other possibilities.

[7-cody]

^ thanks Rachel. I guess I will be patient and wait.

what ended up being your problem? lymes disease?

also on you signature it mentions candida and chemical sensitivities. what kind of symptoms do those give and how do I test for them? what are some good websites for further reading?

[Rachel--24]

what ended up being your problem? lymes disease?

I was exposed to Lyme at some point because I did have some antibodies in my bloodtest to indicate its presence...however, after lots of additional testing (both conventional and alternative) it was ruled out as a cause for my symptoms. Ultimately, it wasnt my main issue.

My main issue is mercury and other heavy metals. My symptoms appeared after having a couple mercury fillings drilled out unsafely. I wasnt aware at the time that there was any risk with the filings. Anyways, thats what tipped the scales for me and I became symptomatic...lots of neurological symptoms as well as major food intolerances and chemical sensitivities.

It wasnt like I was perfectly fine prior to that....I felt fine and I had no symptoms...but all of my Dr.'s have stated that problems were developing long before I got hit with that mercury exposure. It was just the last straw and my body couldnt cope with it. I reached my threshold for toxins and my immune system couldnt deal with the load at that point....thats when the symptoms appeared.

also on you signature it mentions candida and chemical sensitivities. what kind of symptoms do those give and how do I test for them? what are some good websites for further reading?

Candida tends to overgrow in the presence of mercury....or with other conditions that weaken the immune system. Its an opportunistic yeast....its harmless until something happens which allows for it to overgrow. Once that happens it causes an even greater burden on the immune system. Candida produces toxins that can place a big burden on the liver. Both candida and mercury are causative factors in the development of leaky gut.

I really cant seperate symptoms caused by chemicals, or mercury, or candida, or Lyme....they can all pretty much cause the same kinds of symptoms. The symptoms are related to toxicity...because all of these things increase the level of toxicity in the body. One thing can lead to the next...so they really arent seperate issues....these things usually all co-exist.

You cant really have mercury toxicity without also having chronic infections (i.e. parasites, candida, lyme, etc.)....and you cant really have these things going on without it placing a burden on the immune system, the liver, the digestive system, the endocrine system, etc. You cant have all of that going on without also having food intolerances and/or environmental sensitivities. Its a chain reaction type thing....everything becomes compromised....everything is out of balance.....hence the symptoms.

The symptom list is endless and can be different for everyone. Alot of my worst symptoms have improved alot or have gone away completely. Those would be:

Depression

Crying spells

Anger

Brain Fog

Fatigue

Memory Problems

Serious lack of concentration/unable to focus

Migraines

Weight loss

Muscle and joint pain/body aches

Hair loss

Extreme light sensitivity

Jaw pain/TMJ

Bloating

Loose stools/undigested food

Constipation

Numbness/burning/tingling

Blurred vision

There were dozens of minor symptoms but those are the main ones that come to mind right now. Any of them can come back if I'm not careful with my diet....which is very restricted.

Symptoms that still persist on a daily basis are:

food intolerance

chemical sensitivity

headaches

tissue swelling

fluid retention

The most accurate tests for candida are blood antibody tests....they are not offered by conventional Dr.s. None of the conditions I'm being treated for are recognized by western medicine. I did not receive answers from conventional Dr.'s...just dozens of prescriptions to treat my symptoms.

You can Google candida to find hundreds of websites. Its not really a condition all by itself....if chronic candida is an issue its because the immune system is weakened by other factors. Its caused by underlying issues so its really a symptom of a larger problem. Same with chemical sensitivities....its a symptom that the body is overloaded with toxins...and the liver is struggling.

[7-cody]

I was exposed to Lyme at some point because I did have some antibodies in my bloodtest to indicate its presence...however, after lots of additional testing (both conventional and alternative) it was ruled out as a cause for my symptoms. Ultimately, it wasnt my main issue.

My main issue is mercury and other heavy metals. My symptoms appeared after having a couple mercury fillings drilled out unsafely. I wasnt aware at the time that there was any risk with the filings. Anyways, thats what tipped the scales for me and I became symptomatic...lots of neurological symptoms as well as major food intolerances and chemical sensitivities.

It wasnt like I was perfectly fine prior to that....I felt fine and I had no symptoms...but all of my Dr.'s have stated that problems were developing long before I got hit with that mercury exposure. It was just the last straw and my body couldnt cope with it. I reached my threshold for toxins and my immune system couldnt deal with the load at that point....thats when the symptoms appeared.

Candida tends to overgrow in the presence of mercury....or with other conditions that weaken the immune system. Its an opportunistic yeast....its harmless until something happens which allows for it to overgrow. Once that happens it causes an even greater burden on the immune system. Candida produces toxins that can place a big burden on the liver. Both candida and mercury are causative factors in the development of leaky gut.

I really cant seperate symptoms caused by chemicals, or mercury, or candida, or Lyme....they can all pretty much cause the same kinds of symptoms. The symptoms are related to toxicity...because all of these things increase the level of toxicity in the body. One thing can lead to the next...so they really arent seperate issues....these things usually all co-exist.

You cant really have mercury toxicity without also having chronic infections (i.e. parasites, candida, lyme, etc.)....and you cant really have these things going on without it placing a burden on the immune system, the liver, the digestive system, the endocrine system, etc. You cant have all of that going on without also having food intolerances and/or environmental sensitivities. Its a chain reaction type thing....everything becomes compromised....everything is out of balance.....hence the symptoms.

The symptom list is endless and can be different for everyone. Alot of my worst symptoms have improved alot or have gone away completely. Those would be:

Depression

Crying spells

Anger

Brain Fog

Fatigue

Memory Problems

Serious lack of concentration/unable to focus

Migraines

Weight loss

Muscle and joint pain/body aches

Hair loss

Extreme light sensitivity

Jaw pain/TMJ

Bloating

Loose stools/undigested food

Constipation

Numbness/burning/tingling

Blurred vision

There were dozens of minor symptoms but those are the main ones that come to mind right now. Any of them can come back if I'm not careful with my diet....which is very restricted.

Symptoms that still persist on a daily basis are:

food intolerance

chemical sensitivity

headaches

tissue swelling

fluid retention

The most accurate tests for candida are blood antibody tests....they are not offered by conventional Dr.s. None of the conditions I'm being treated for are recognized by western medicine. I did not receive answers from conventional Dr.'s...just dozens of prescriptions to treat my symptoms.

You can Google candida to find hundreds of websites. Its not really a condition all by itself....if chronic candida is an issue its because the immune system is weakened by other factors. Its caused by underlying issues so its really a symptom of a larger problem. Same with chemical sensitivities....its a symptom that the body is overloaded with toxins...and the liver is struggling.

Ahh, I see...

how can I tell if I have mercury contamination and what not?

I have almost all the primary symptoms you listed.

what kind of diet are you on?

[Rachel--24]

how can I tell if I have mercury contamination and what not?

There are Dr.'s that specialize in this stuff. I see some really good Dr.'s with alot of experience. Some of the possibilities they wanted to investigate was mold exposure (which I know is not the issue), high chemical exposure (I know that wasnt the issue), heavy metal toxicity and Lyme...basically because those are the top 4 to cause such severe food intolerance and chemical sensitivity.

Its not easy to determine mercury toxicity. No test is really straight forward....it was a matter of ruling out everything else and having various tests to see if heavy metals were the issue. It was the most likely thing since I did get sick after fillings were removed but the Dr.'s dont jump to conclusions about anything...which is good.

Its hard to test for mercury because it doesnt stay in the blood for very long....it gets stored in the body after a short period of time. It wont usually show up in hair, blood or urine for that reason.

I had hair analysis which can be very useful in diagnosing mercury....even though the mercury itself doesnt show up. There's a certain pattern to look for in the essential minerals (calcium, magnesium, copper, etc.). Mercury kind of leaves its "signature" this way.

Also, I had a provoked urine challenge. Mercury and other heavy metals can show up in urine if a chelator is given prior to the urine collection. A chelator is a drug that binds with mercury and metals and pulls them out of the body. They can then measure the levels in the urine. This should only be done under the care of a knowledgeable Dr.

Mercury doesnt always show up right away in this type of test either.....it can take some time for the body to release mercury.

I had 3 tests and the same 9 toxic metals showing up each time....including mercury. It was enough for my Dr.'s to decide that treatment was necessary.

I'm also in the process of taking another test called a porphyrin test. Its a urine test that doesnt involve taking a chelator. This test doesnt look for mercury....it looks for certain porphyrins in the urine that are elevated in the presence of mercury/heavy metal toxicity.

Aside from those I've also had several alternative tests from a few different Dr.'s. I've had kinesiology (muscle testing), electrodermal screening (BioSet) and Autonomic Response Testing (an advanced and highly accurate form of muscle testing). Each Dr. came to the same conclusion...mercury was the main issue. I still do the autonomic response testing every few months and the results havn't changed....I'm still mercury toxic.

what kind of diet are you on?

My diet is pretty complicated and it took me a long time to really figure out what I could tolerate and what I couldnt. Its not really a matter of which foods are safe because everything pretty much bothers me to some extent....some cause very minor symptoms while others cause very severe symptoms. I eat the stuff that doesnt affect me too badly.

I mostly stick to the Feingold Diet which restricts high phenol foods like salicylates, food dyes, preservatives, additives, etc. Those are the things which cause everything on my primary symptom list to come back. Those foods also decrease my tolerance for other foods as well as chemicals.....my sensitivities increase when I eat high phenol foods.

I only eat a handful of things and the ingredient list has to be very short. I dont tolerate fruits (except pears) and most veggies, no nuts, no spices, no herbs, no chocolate, no milk, etc. etc.

The crazy thing is that I DO eat gluten now. There are a few things I eat that are not gluten free and yet I have no significant problems with them. I went off my diet about 6 months ago after almost 3 years gluten-free. My Dr.'s probably wont be too pleased but I plan on discussing this with them at my next visits. They can do some of the alternative tests to see if its causing my system alot of stress.

I dont have Celiac...I had all the tests to rule that out a few years back. I did test positive with Enterolab (for gluten sensitivity/no celiac genes) but my symptoms didnt resolve on the gluten-free diet alone. I didnt really see any improvement until I started dealing with the mercury issue and getting treated for that. I dont think I would have tolerated gluten at all prior to my treatments...but now I'm able to add some things back in...little by little. I just listen to my body.

Oh...I also take enzymes that are high in DPPIV (AFP Peptizyde)...which I believe has helped me alot. DPPIV is the enzyme required for digestion of gluten and casein.

[7-cody]

^ ahh, that makes sense... I'm definitely going to look into that. staying away from food additives sounds like a good idea...

is there a way I can test for vitamin and mineral levels in my body? make sure I'm not deficient anywhere? who would do it, my regular family doctor? is it a good idea?

how do I find out if the feingold diet might be good for me?

[Rachel--24]

is there a way I can test for vitamin and mineral levels in my body? make sure I'm not deficient anywhere? who would do it, my regular family doctor? is it a good idea?

I think these tests are important. My MD (who is mostly non-conventional) ordered these tests for me. I had all of my vitamins checked sometime last year (bloodtest). For the most part my levels were ok.

I've had my minerals assessed with a hair analysis and more recently I requested an RBC (red blood cell) element test which is more accurate. I already knew my minerals were pretty messed up..(this is typical when mercury is a problem)....but the RBC showed that I was deficient in most minerals, significantly deficient in selenium and chromium....and I also had toxic levels of copper.

I definately think its a good idea to get these checked.....if minerals are out of balance alot of things can go wrong. Right now its a priority for me to bring copper levels down and try to get things balanced out. Also, my treatments for heavy metals will likely be more successful if my minerals are addressed.

how do I find out if the feingold diet might be good for me?

I think the only way to know if it'll be helpful would be to try it.

Its a pretty strict diet though....it eliminates alot of fruits, veggies, all food colorings, preservatives (sulfites), additives such as MSG and aspartame, etc.

I felt tons better eliminating these things.

[7-cody]

Rachel,

your symptoms and what not sound JUST LIKE ME... every single symptoms you listed. brain fog, constipation... fatigue.. would my "rosacea" count as a "skin rash" symptom?

but yeah, I have a quick question, how did you get mercury contamination? from the teeth filling? did you eat a lot of fish growing up? I didn't, could mercury still be my issue?

[happygirl]

Keep in mind that a biopsy/endoscopy doesn't only look for Celiac, but for other disorders as well. You could have Celiac (only), Celiac and something else, or no Celiac and something else. (Or, of course, the endo/biopsy can show no problems, which doesn't mean you aren't having symptoms)

[7-cody]

^ ahh... very nice... so every time they do a celiac biopsy test they check for other things too..

well I don't really have any gastoerontoligist symptoms, or whatever, like not stomach pain etc... just constipation..

[Rachel--24]

your symptoms and what not sound JUST LIKE ME... every single symptoms you listed. brain fog, constipation... fatigue.. would my "rosacea" count as a "skin rash" symptom?

When my symptoms first appeared I had some burning sensations on my face....I could also see some broken blood vessels. It all happened pretty suddenly. I went to the dermatologist about my skin and she diagnosed rosacea.

I read all the info about rosacea and it didnt really seem like my problem because my cheeks werent all that red and I'm not fair skinned. Anyway, I used the skin cream she prescribed and it didnt help at all...went back and she prescribed Tetracycline. I started taking the antibiotic and then I got WAY worse...thats when yeast and other GI issues seemed to flare up.

I actually never had rosacea. As I got more and more sensitive to chemicals and other things my skin was getting more irritated. I havent really had problems with rashes but I avoid chemicals and I think that helps alot. Only thing that causes rashes for me now is metals...like if a belt buckle touches my stomach, rings, bracelets....stuff like that.

but yeah, I have a quick question, how did you get mercury contamination? from the teeth filling? did you eat a lot of fish growing up? I didn't, could mercury still be my issue?

My mom had 11 fillings while she was pregnant with me so the Dr.'s feel that I was born with significant exposure. After that I had 4 fillings put in as a child. I didnt get sick until a dentist drilled out 2 of my fillings and I was exposed to alot of mercury vapor....that was when I was 31 (5 years ago).

I never ate alot of fish....the majority of my exposure came from the fillings...environmental mercury is another issue but the fillings is what really pushed me over the edge.

Mercury can be an issue for anyone if they have difficulties excreting it. Some people are just more susceptible due to genetics or other factors. Its toxic for everyone but some people are more capable of detoxing it, while others are less capable. Some people are also extremely sensitive to it.

Vaccines are another major source of exposure.

The symptoms I listed are kind of "universal" as far as toxicity goes. Its not just mercury that can produce those symptoms but also things like exposure to toxic molds, chemicals, chronic infections (esp. candida and Lyme), etc. etc.

[AliB]

I'm not sure that 3 months was really a fair trial for the gluten-free diet. I have been on it for 3 months and it is only just now that my immune system is beginning to kick back in. Now I am getting 'proper' reactions to gluten. What it has told me is that some of the foods I have been having that I thought were safe, are not.

I thought I could cope with oats. What I didn't realise is the extent of contamination of the stuff. I am now reacting to them - could be the oats, could be wheat contamination, whatever, it is only now that I now have an obvious reaction - before, I just put it down to the gut damage or problems with other food.

I have noticed this a lot that some get a bit better then go back downhill. When we go gluten-free the normal reaction is to hunt out replacements for those yummy gluten foods. Typically these are other high-carb, high-sugar goods. We then start to get reactions to those foods too. What is going on? I suspect it may be that some of us have a problem not just with gluten but carbs per se.

I have never been able to cope with carbs. It is only by cutting them out of my diet and just sticking to plain foods, meat, fish, poultry, fresh fruit and veg, that I have been able to help my body recover. I am a metabolic 'protein' type and as long as I stick to the appropriate diet, although somewhat slow I am progressing. Every day there is improvement generally. Ok, I get the odd blip (like the accidental glutenings I have just been dealing with) but I am getting better.

I am beginning to get the Candida under control, I have not caught the colds that have been lurking around me (a sure sign that my immune system is picking up) and I can run up (on a good day!) all 17 of our front steps and it is years since I could do that!

[7-cody]

When my symptoms first appeared I had some burning sensations on my face....I could also see some broken blood vessels. It all happened pretty suddenly. I went to the dermatologist about my skin and she diagnosed rosacea.

I read all the info about rosacea and it didnt really seem like my problem because my cheeks werent all that red and I'm not fair skinned. Anyway, I used the skin cream she prescribed and it didnt help at all...went back and she prescribed Tetracycline. I started taking the antibiotic and then I got WAY worse...thats when yeast and other GI issues seemed to flare up.

I actually never had rosacea. As I got more and more sensitive to chemicals and other things my skin was getting more irritated. I havent really had problems with rashes but I avoid chemicals and I think that helps alot. Only thing that causes rashes for me now is metals...like if a belt buckle touches my stomach, rings, bracelets....stuff like that.

My mom had 11 fillings while she was pregnant with me so the Dr.'s feel that I was born with significant exposure. After that I had 4 fillings put in as a child. I didnt get sick until a dentist drilled out 2 of my fillings and I was exposed to alot of mercury vapor....that was when I was 31 (5 years ago).

I never ate alot of fish....the majority of my exposure came from the fillings...environmental mercury is another issue but the fillings is what really pushed me over the edge.

Mercury can be an issue for anyone if they have difficulties excreting it. Some people are just more susceptible due to genetics or other factors. Its toxic for everyone but some people are more capable of detoxing it, while others are less capable. Some people are also extremely sensitive to it.

Vaccines are another major source of exposure.

The symptoms I listed are kind of "universal" as far as toxicity goes. Its not just mercury that can produce those symptoms but also things like exposure to toxic molds, chemicals, chronic infections (esp. candida and Lyme), etc. etc.

ahh... I see. I have dark red cheeks that never change or go away. always the same. no triggers. nothing. I tried the creams, nothing..

I've had my symptoms for as long as I remember. I think they probably started when I was 7. I fell off the back of a pickup truck that braked too fast, and smeared the right side of my face on pavement. i'm assuming I obviously took a lot of antibiotics etc... probably weakened my immune system somehow and caused all my problems. just a theory tho, now whenever I take antibiotics I break out into hives everywhere.

I've been reading a lot of mercury and Sacilynes and what not. I think my plan is to keep researching until my Celiac Diagnosis (consultation appointment is June 6th). If the tests come back negative, then I'll probably just try experimenting with different diets...with HCL & enzyme supplments... do you think that's a good plan?

also, just thought I'd throw this out there, but a couple years ago (2006) I was staying at my aunts house and had nothing to eat. I was also dead broke, so I bought a couple boxes of pop tarts and basically lived off of them for the next two days. I remember on the second day I went and ate another pop tart, shortly after I felt like I was in some kind of seizure. I was on the ground in pain, rolling around my head just stinging almost... can't really explain it, but I started having a hard time breathing, breathing real heavy and what not.. sweating profusely and this lasted for like 10-15 mins and then just suddenly went away. could this indicate anything? the more I read about feingold the more I'm reminded about this. whats your take?

I'm not sure that 3 months was really a fair trial for the gluten-free diet. I have been on it for 3 months and it is only just now that my immune system is beginning to kick back in. Now I am getting 'proper' reactions to gluten. What it has told me is that some of the foods I have been having that I thought were safe, are not.

I thought I could cope with oats. What I didn't realise is the extent of contamination of the stuff. I am now reacting to them - could be the oats, could be wheat contamination, whatever, it is only now that I now have an obvious reaction - before, I just put it down to the gut damage or problems with other food.

I have noticed this a lot that some get a bit better then go back downhill. When we go gluten-free the normal reaction is to hunt out replacements for those yummy gluten foods. Typically these are other high-carb, high-sugar goods. We then start to get reactions to those foods too. What is going on? I suspect it may be that some of us have a problem not just with gluten but carbs per se.

I have never been able to cope with carbs. It is only by cutting them out of my diet and just sticking to plain foods, meat, fish, poultry, fresh fruit and veg, that I have been able to help my body recover. I am a metabolic 'protein' type and as long as I stick to the appropriate diet, although somewhat slow I am progressing. Every day there is improvement generally. Ok, I get the odd blip (like the accidental glutenings I have just been dealing with) but I am getting better.

I am beginning to get the Candida under control, I have not caught the colds that have been lurking around me (a sure sign that my immune system is picking up) and I can run up (on a good day!) all 17 of our front steps and it is years since I could do that!

ahh, wow, yeah I see.. well I'm going to do a biopsy and get an official diagnosis. if the results are negative, I'll probably try something similar to the feingold diet next.