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Hello,

I need some advice. I have been gluten-free for about 5 years, following a primal type diet. I started the diet due to several health problems; joint pain, dizziness, migraines, fatigue and so on. I also had a history of severe anaemia and had other mineral/vitamin deficiencies as well. I never got tested for celiac prior to starting the diet. I did find that removing gluten helped a lot, and when I tried to introduce it a year after (by eating a piece of bread) I got really sick - joint pain/inflammation, dizziness. I tried yet again the following year with the same result. One piece of bread made me really sick, but since I didn't have an official diagnosis I wasn't sure what was what. 

Then two years ago I took a GI-Map test and it showed very high in the Anti-gliadin SIgA, over 200. I had at the time tried to eat gluten-free oats, which resulted in increased inflammation/pain in my joints. I also started to eat out more (which I hadn't for a long time) and I was unsure many times how 'safe' it was; the places weren't 'gluten-free' restaurants and sometimes I had to explain what gluten even meant. I sometimes get notably sick after eating out, so I try once again to avoid it as much as possible.  

Now, my question is - Can you have very high Anti-gliadin SIgA and not have celiac disease?

From what I gather the test isn't considered reliable, but more in the way that it misses some celiac patients by showing a negative, not the other way around. Or?

I can't really do much more at this point... or I don't know what to do - eating gluten for the required time to make more tests would not work as I get so sick. But sometimes I wonder if "it's all in my head" and more of a psychosomatic nature, since I haven't been able to confirm it with a biopsy and so on. 

... also I've read that there are gluten and gliadin cross-reactive foods (dairy, corn, oats, millet, rice and yeast), is that true?

I would be so thankful for some input!

Ilsa

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From what I have read, that particular test is not used in helping to diagnose celiac disease.  It is for research use only.  

https://eaglebio.com/wp-content/uploads/data-pdf/gli35-k01.pdf-package-insert.pdf

The GI Map test?  I never had one.  I found information on this website.  It sounds great, but their one endorsement is by a naturopath.  I am not sure the evidence-based medical field has embraced this testing (or US insurance).

https://www.diagnosticsolutionslab.com/tests/gi-map

Were the other standard celiac disease tests given at the same time (TTG, DGP and EMA)?  If yes, what were those results?

Celiac disease antibodies testing (intestinal biopsies too) requires you to be on a full gluten diet.  You can consider a gluten challenge and work towards a formal diagnosis or just remain gluten free.  It sounds like you know that gluten makes you sick.  If your anemia and vitamin deficiencies resolved (I was anemic too), that should indicate that you are healing.  That would help confirm that you might have celiac disease.  

While I am formally diagnosed, my hubby is not.  He went gluten-free 12 years before my diagnosis.  He refuses to do a challenge because he knows that gluten makes him sick (he never cheats).   Do you not get support from family, friends and medical?  

Cross reactors?  A myth.  I consume dairy, coffee, corn, etc. and I have healed based on repeat biopsies.  But an unhealed gut could have issues with those foods.  Just not a celiac disease reaction.  I can say that I do not consume oats.  Any oats.  It might be worth going grain free for a few months.  Or consider the “Fasano” diet for a few months and no eating out.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

I am sorry that I can not help you.  Only you can decide if a diagnosis is important to you and worth the effort of a gluten challenge.  

 

Edited by cyclinglady

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Thank you so much for your reply! It means a lot to me that you took the time to write to me.

No other tests has been done and since I get so sick from ingesting gluten it's hard for me to do more testing. I guess since I got better (deficiencies as well) it points to something. 

But there must be a reason I had high Anti-gliadin SIgA, or? It coincided with me probably reacting to exposure to gluten and possibly being sensitive to oats as well. I don't know though. 

But usually high Anti-gliadin SIgA indicates celiac? I've read that it's found in ~80% of patients with celiac disease... could it then be found in someone who doesn't have it? Why would the body produce high levels of it otherwise?

The Fasano diet seems interesting! I've not been strictly grain free even when on my paleo type diet; I always went off it occasionally with pseudo-grains like buckwheat for example. 

The thing that also speaks for not tolerating gluten is the fact that I've gotten sicker much more often since starting to eat out more. It's so tricky to do that and I never feel completely sure that the food is safe.

 

 

Edited by Ilsa

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50 minutes ago, Ilsa said:

But usually high Anti-gliadin SIgA indicates celiac? I've read that it's found in ~80% of patients with celiac disease... could it then be found in someone who doesn't have it? Why would the body produce high levels of it otherwise?

I believe the reason they use the 80% figure is because not all Celiacs produce that antibody. Some will show negative with the IGA but positive with the IGG.  It is not found with folks that are not celiac. The numbers will go down after you have been following the gluten free lifestyle for a while. Reduction in symptoms gluten free and a decrease in antibodies can be considered diagnostic by some doctors. If you absolutely can't do a challenge talk to your doctors and see if he will diagnose officially that way.

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30 minutes ago, ravenwoodglass said:

It is not found with folks that are not celiac.

If it's not found in people that are not celiac, then if you have high levels of it... then you are? I'm sorry if I sound confused. :)

Thank you for your reply! 

On a side note; amazing how you could recover from all those symptoms, I'm hoping to heal the same way also. 

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4 hours ago, Ilsa said:

If it's not found in people that are not celiac, then if you have high levels of it... then you are? I'm sorry if I sound confused. :)

Thank you for your reply! 

On a side note; amazing how you could recover from all those symptoms, I'm hoping to heal the same way also. 

 

While you did had a high result,  I am not sure you had an actual celiac disease blood test.  Did you have a blood test or was it a stool/fecal test?  A stool/fecal is not recommended by any of the leading celiac disease research centers in the US.  An older version of the AGA blood test was discontinued almost 10 years ago.  It was replaced by the deamidated gliadin protein epitopes (DGP IgAA and DGP IgG) test.  

 

 

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1 hour ago, cyclinglady said:

 

While you did had a high result,  I am not sure you had an actual celiac disease blood test.  Did you have a blood test or was it a stool/fecal test?  A stool/fecal is not recommended by any of the leading celiac disease research centers in the US.  An older version of the AGA blood test was discontinued almost 10 years ago.  It was replaced by the deamidated gliadin protein epitopes (DGP IgAA and DGP IgG) test.  

 

 

It was a stool test. So I'm wondering then what could cause such high numbers of the antibody if I don't have celiac... it's confusing. 😕 It must mean that my body is reacting badly to gluten, anyway... I mean obviously it does since I get so unwell from it. It would be nice to have some sort of confirmation though. 

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You said that feel much better on the gluten free diet.   Consider just remaining gluten free.  That stool test you took might have been correct for all we know (and I know nothing about that test).  The real test is being able to heal or resolve symptoms on the gluten free diet.  That is what counts.  Good health.  😊

If you are still having lingering symptoms, do not eat out until you feel better.  Who wants to constantly experience setbacks?  

Edited by cyclinglady

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13 hours ago, cyclinglady said:

You said that feel much better on the gluten free diet.   Consider just remaining gluten free.  That stool test you took might have been correct for all we know (and I know nothing about that test).  The real test is being able to heal or resolve symptoms on the gluten free diet.  That is what counts.  Good health.  😊

If you are still having lingering symptoms, do not eat out until you feel better.  Who wants to constantly experience setbacks?  

Yes, that's true. I got much better in many ways... to be fully healed I need to be more strict... I'll try the Fasano diet and not eating out for quite some time. Hopefully it'll help. Thank you for your advice! 

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5 hours ago, Ilsa said:

Yes, that's true. I got much better in many ways... to be fully healed I need to be more strict... I'll try the Fasano diet and not eating out for quite some time. Hopefully it'll help. Thank you for your advice! 

Sounds like a good plan if you can't do a challenge to get a formal diagnosis. I didn't realize that the test you were referring to was a stool and not a blood test.

I did find some interesting research on stool testing to check for dietary compliance. I am including a link

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059698/

The page also includes links to other interesting articles. Hopefully someday research will enable doctors to diagnose using a stool or mucosal challenge and biopsy so we don't have to poison ourselves to get the diagnosis we need.

edit to add: This article is talking about using the stool test to find wheat byproducts that are not digested. It's purpose is to check for dietary compliance. They are not looking for antibodies but I hope this research will lead to more humane ways to diagnose those already gluten free or light. 

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4 hours ago, ravenwoodglass said:

Sounds like a good plan if you can't do a challenge to get a formal diagnosis. I didn't realize that the test you were referring to was a stool and not a blood test.

I did find some interesting research on stool testing to check for dietary compliance. I am including a link

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059698/

The page also includes links to other interesting articles. Hopefully someday research will enable doctors to diagnose using a stool or mucosal challenge and biopsy so we don't have to poison ourselves to get the diagnosis we need.

Thank you for the link, I'll check it out! 😍

I still don't get why someone can have such high levels of an antibody against gluten without the body being intolerant to it. There must be a reason the body produces it. The very high anti-gliadin + symptoms + symptom improvement (anaemia for example)... shouldn't that be enough to confirm that my body is intolerant to gluten? Somehow it feels like the symptoms (joint inflammation, low-grade fever, dizziness etc) after ingesting gluten/or accidental gluten exposure should rule out a 'false' positive result. It's one thing if someone has no reaction to gluten at all, but I have a myriad of strong immune responses. 

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The stool tests for antibodies have not been found to be very accurate.  Unfortunately, due to a loophole in FDA regulations, that doesn’t mean that labs can’t sell them.

https://www.bmj.com/content/332/7535/213

https://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

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It is because the stool test is not yet accepted by the medical community.    There is not enough scientific evidence that would cause Gastroenterologists  who specialize in celiac disease to start using the stool tests to prove or help to prove a diagnosis.  Even the blood tests (which are well proven to work) are not perfect.  That is why Gastroenterologists still insist on small intestinal biopsies to confirm a celiac disease diagnosis.  

In your case, the stool test might be accurate.  When you look at your high result and the fact you feel better on a gluten free diet, then you might decide that you most likely have celiac disease.  For some people, this is enough evidence. They want to feel well.  For some people this might not be enough evidence to condemn them to a life-long gluten-free diet.  

So, if you trust your doctor, this stool test, and your gluten-free diet symptom resolution,  why are you hesitant? 

Edited by cyclinglady

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29 minutes ago, Ilsa said:

Thank you for the link, I'll check it out! 😍

I still don't get why someone can have such high levels of an antibody against gluten without the body being intolerant to it. There must be a reason the body produces it. The very high anti-gliadin + symptoms + symptom improvement (anaemia for example)... shouldn't that be enough to confirm that my body is intolerant to gluten? Somehow it feels like the symptoms (joint inflammation, low-grade fever, dizziness etc) after ingesting gluten/or accidental gluten exposure should rule out a 'false' positive result. It's one thing if someone has no reaction to gluten at all, but I have a myriad of strong immune responses. 

I don't think anyone is thinking you had a false positive just that the stool testing is not recognized as a reliable form of testing for diagnosis. Have you ever had a celiac blood panel done? If you had high stool antibodies maybe a blood test might show positive also? It sounds like you are getting a lot of relief from the diet and only you can decide if you want to pursue further diagnosis.

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11 minutes ago, RMJ said:

The stool tests for antibodies have not been found to be very accurate.  Unfortunately, due to a loophole in FDA regulations, that doesn’t mean that labs can’t sell them.

https://www.bmj.com/content/332/7535/213

https://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

Thank you for the links. 👌

 

9 minutes ago, cyclinglady said:

It is because the stool test is not yet accepted by the medical community.    There is not enough scientific evidence that would cause Gastroenterologists  who specialize in celiac disease to start using the stool tests to prove or help to prove a diagnosis.  Even the blood tests (which are well proven to work) are not perfect.  That is why Gastroenterologists still insist on small intestinal biopsies to confirm a celiac disease diagnosis.  

In your case, the stool test might be accurate.  When you look at your high result and the fact you feel better on a gluten free diet, then you might decide that you most likely have celiac disease.  For some people, this is enough evidence. They want to feel well.  For some people this might not be enough evidence to condemn them to a life-long gluten-free diet.  

So, if you trust your doctor, this stool test, and your gluten-free diet symptom resolution,  why are you hesitant? 

Yes, why isn't it enough? I guess I'm one of the persons that prefers a 'scientifically validated' diagnosis, approved of by the medical community. Then again that's not an option at this point anyway since I get so violently ill, a gluten challenge would be too much for my system.  

I'm struggling a bit with how complicated it can be with the diet and how worried I am over getting 'gluten-ed'... but no matter what results I get from any test, I still get sick when I eat gluten... so it won't really change anything I guess. Even though it's been quite some time for me to adjust to eating gluten free, sometimes it just hard to accept. 

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4 minutes ago, ravenwoodglass said:

I don't think anyone is thinking you had a false positive just that the stool testing is not recognized as a reliable form of testing for diagnosis. Have you ever had a celiac blood panel done? If you had high stool antibodies maybe a blood test might show positive also? It sounds like you are getting a lot of relief from the diet and only you can decide if you want to pursue further diagnosis.

This is the only test I've had. My doctor suspected gluten intolerance/celiac (due to my numerous symptoms) and since he's a functional medicine practitioner, this is what he ordered. 

I don't know how well any further testing would work, since I'm gluten free (even though might be still exposed to it occasionally). Maybe someday I'll be able to do a gluten-challenge... or maybe I just need to work on Acceptance. 😁

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2 hours ago, Ilsa said:

Thank you for the links. 👌

 

Yes, why isn't it enough? I guess I'm one of the persons that prefers a 'scientifically validated' diagnosis, approved of by the medical community. Then again that's not an option at this point anyway since I get so violently ill, a gluten challenge would be too much for my system.  

I'm struggling a bit with how complicated it can be with the diet and how worried I am over getting 'gluten-ed'... but no matter what results I get from any test, I still get sick when I eat gluten... so it won't really change anything I guess. Even though it's been quite some time for me to adjust to eating gluten free, sometimes it just hard to accept. 

It can be hard to accept.  My hubby went gluten free 12 years before my diagnosis.  His GP and my allergist advised him to give up gluten.  Poor advice in terms of a formal diagnosis, but excellent advice at improving his health.  It took him a good year to master the diet and not to cheat.  Now, almost 20 years later, he NEVER cheats (not after the first year).   He does take more risks than me when traveling, but his reactions while bad, are not as severe as mine.  Maybe it is because I have two other autoimmune disorders and allergies. Maybe I am just more “delicate”.  😆

I am confident that you will work it out.  

More advice.  Just tell people you have celiac disease. You were diagnosed by a Functional Medicine Practitioner. You do feel better on the diet.  My hubby has mentioned that I get way more support than he does from family, medical and friends.  But his support improved once I was diagnosed.  Now everyone assumes we are both celiac (we probably are).  Besides what nut would remain gluten free for 20 years if it did not help?  

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3 hours ago, cyclinglady said:

It can be hard to accept.  My hubby went gluten free 12 years before my diagnosis.  His GP and my allergist advised him to give up gluten.  Poor advice in terms of a formal diagnosis, but excellent advice at improving his health.  It took him a good year to master the diet and not to cheat.  Now, almost 20 years later, he NEVER cheats (not after the first year).   He does take more risks than me when traveling, but his reactions while bad, are not as severe as mine.  Maybe it is because I have two other autoimmune disorders and allergies. Maybe I am just more “delicate”.  😆

I am confident that you will work it out.  

More advice.  Just tell people you have celiac disease. You were diagnosed by a Functional Medicine Practitioner. You do feel better on the diet.  My hubby has mentioned that I get way more support than he does from family, medical and friends.  But his support improved once I was diagnosed.  Now everyone assumes we are both celiac (we probably are).  Besides what nut would remain gluten free for 20 years if it did not help?  

There seem to be so many different stories when it come to celiac and/or intolerance. Many give up gluten in the hope of improving health and then find out it was a big culprit... which is great, but then it's hard to get a diagnosis because it's then no good option to make yourself so sick.

I guess that some are just more confident in what their bodies are telling them and then they don't need an official diagnosis. We should be grateful that we discovered the intolerance and that we can/have improved our health, no matter where we fall when it comes to how/if we are diagnosed. 

I will continue to just say I have celiac, since that's what the Dr said. It's good to keep things simple and important to be taken seriously. It's hard anyway since people don't really get it always. 

Thank you so much again. I'm so thankful for advice and support. 🧡

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