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Possible Refractory Celiac Disease


Anonym

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plumbago Experienced
On 4/23/2021 at 10:08 AM, trents said:

And for about 10% of celiacs. oat protien (gluten free oats) harms the gut

Do you know if there is a way to test for this?


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trents Grand Master
(edited)
15 minutes ago, plumbago said:

Do you know if there is a way to test for this?

Not specifically but it should throw the same antibodies as gluten and the same symptoms. So if eliminating oats makes improvements no those things there is the test.

Edited by trents
plumbago Experienced
1 hour ago, trents said:

Not specifically but it should throw the same antibodies as gluten and the same symptoms. So if eliminating oats makes improvements no those things there is the test.

Would normal antibodies, then, exclude oats as a potential problem?

trents Grand Master
52 minutes ago, plumbago said:

Would normal antibodies, then, exclude oats as a potential problem?

I would think so, albeit there are always those atypical cases where antibodies are normal but people still have villi blunting.

plumbago Experienced
3 minutes ago, trents said:

I would think so, albeit there are always those atypical cases where antibodies are normal but people still have villi blunting.

Thanks. Do you have evidence that you can post that oats throws the antibody levels off?

RMJ Mentor
3 hours ago, plumbago said:

Do you know if there is a way to test for this?

When I finally was sufficiently gluten free to have normal antibody levels I was not eating oats.  I asked my GI if I could eat oats.  She said to try pure (gluten free) oats for six months, then we’d retest antibody levels.  Six months of oats didn’t affect the levels so now I can eat pure oats.

There have been some research studies looking at celiac reactions to oats but they were using tests not available in standard clinical laboratories. 

trents Grand Master
2 hours ago, plumbago said:

Thanks. Do you have evidence that you can post that oats throws the antibody levels off?

https://www.frontiersin.org/articles/10.3389/fnut.2019.00162/full According to this fairly recent survey study, the waters are still muddy with regard to non CC oat protein causing inflammation. There are some in vivo studies that suggest it could if sufficient quantities are consumed but it is unlikely anyone would eat that much oatmeal. That's one thing I took from the above linked article.


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plumbago Experienced
2 hours ago, trents said:

https://www.frontiersin.org/articles/10.3389/fnut.2019.00162/full According to this fairly recent survey study, the waters are still muddy with regard to non CC oat protein causing inflammation. There are some in vivo studies that suggest it could if sufficient quantities are consumed but it is unlikely anyone would eat that much oatmeal. That's one thing I took from the above linked article.

Thanks. I am reading now, but can't get past the first sentence!

While oats have attractive nutritional properties that can improve the quality and palatability of the restrictive, low fiber gluten-free diet,

gluten-free diets are not low fiber. What's up with that?! I will keep reading....

trents Grand Master
8 minutes ago, plumbago said:

Thanks. I am reading now, but can't get past the first sentence!

While oats have attractive nutritional properties that can improve the quality and palatability of the restrictive, low fiber gluten-free diet,

gluten-free diets are not low fiber. What's up with that?! I will keep reading....

I think that most whole grain (read, “high fiber”) food products on the shelves are dominated by wheat. I think that’s the implication. Most processed gluten-free alternatives are largely rice flour and tapioca based.

GFinDC Veteran
8 hours ago, plumbago said:

Thanks. Do you have evidence that you can post that oats throws the antibody levels off?

I don't think Trents said they do throw antibody levels off?  Anyway, it doesn't seem like they would as the tests are geared towards gliaden, the gluten in wheat, not in oats.  That's just my thinking though, not some text book answer.  Anti-gliaden is not the same as anti-avenin right?

RMJ Mentor
19 minutes ago, GFinDC said:

I don't think Trents said they do throw antibody levels off?  Anyway, it doesn't seem like they would as the tests are geared towards gliaden, the gluten in wheat, not in oats.  That's just my thinking though, not some text book answer.  Anti-gliaden is not the same as anti-avenin right?

Anti-gliadin is not anti-avenin but antibodies aren’t 100% specific - they may bind, with less affinity, to proteins that aren’t their main antigen. When working with antibodies in a laboratory, a lot of the work is finding an antibody that doesn’t cross react. 

Some of the research that says people with celiac react to oats may be due to contamination of oats with wheat, rather than a true reaction.  However, There is also some evidence that in a small percent of people with celiac disease, their immune system genuinely reacts to oats as well as wheat, rye and barley.

https://www.sciencedirect.com/science/article/abs/pii/S0896841114001474?via%3Dihub

GFinDC Veteran

Thanks RMJ, that article is helpful! :)

tessa25 Rising Star

You can try a very basic diet of meat, eggs, cooked vegetables and see if your numbers reach normal. If so, gradually add ingredients until you find the culprit.

  • 3 weeks later...
Anonym Rookie

I figured that a status update would be of interest to those reading this thread.

I had the biopsy today. Overall, they took 9 samples, 4 of which are used to test for the refractory variant of celiac disease. The doctor noted that there were no changes visible to eye in the gut, and that the gut looked completely normal to the naked eye. However, the laboratory analysis could reveal something that might explain the antibody levels.

Would love to hear some thoughts. I will post an update once I hear from the laboratory.

plumbago Experienced

In my experience, doctors are very good at noting damage to the crypts and it usually aligns to what is found at biopsy. But users coming after me will tell you the opposite, most likely. And technically, they are correct. Your case may also be a bit different. In any case, please do keep us updated and thanks for coming back and posting.

trents Grand Master

The ability to see damage during the scoping may depend on the resolution of the camera on the end of the scope being used.

Scott Adams Grand Master

I think it really depends on the expertise of the doctor, just like any tests related to celiac disease. I've seen the exact incorrect procedures followed by doctors with regard to celiac disease blood tests--for example not telling their patients that they need to keep eating gluten for at least the 6-8 weeks leading up to any blood tests for celiac disease--then happily telling them their tests were negative! How many times on this forum has this happened? Far too many.

Likewise, I'm sure there are great gastroenterologists out there, but I'm also sure that there are bad ones. Part of getting a formal, and correct diagnosis, appears to be luck. I'm sure there are far too many celiacs who are eating gluten daily right now who are thinking that their test results cleared them of celiac disease, but the test procedures weren't properly followed by their doctors so the test results were false negative.

On top of all this, do doctors ever explain to their patients that over 10% people have gluten sensitivity, and there currently isn't a test for it? I would be surprised if even 10% of them explained this. If they did explain this many people might try out a gluten-free diet even if their test results were accurate, and negative. 

trents Grand Master

Scott, when you say there is no test yet for gluten sensitivity, do you mean no test to differentiate GS from celiac disease? I'm thinking someone on the forum a few months ago posted a research link that indicated both would produce antibodies.

Scott Adams Grand Master

Yes, there is no diagnostic test available at this point for non-celiac gluten sensitivity, only for celiac disease. From what I've read, antibodies may work for some, but currently this is only early research, and isn't being used at this point:

 

 

 

 

trents Grand Master

Thanks for the information, Scott. I was confused about this. Everything I read said that a negative biopsy would essentially rule out celiac disease and leave you with the NCGS option but did not specifically say that NCGS did not produce produce positive antibody tests on a celiac panel.

Posterboy Mentor
On 4/25/2021 at 6:11 AM, Anonym said:

Is it possible, that the condition has since gotten worse so that something like milk protein and avenin from oats trigger the same reaction?

Anonym,

I was actually researching the Milk protein problem for some one else......but it is possible Milk might be your problem.

Celiac.com ran a nice article about this connection about 5 Months ago now...

Here is the article about it.

Here is the pure research on the topic showing that indeed Cows Milk can trigger a reaction in people on a  gluten free diet.

Entitled "Anti-tissue transglutaminase antibodies not related to gluten intake]"

https://pubmed.ncbi.nlm.nih.gov/29555204/

I will quote the full abstract who might be following this.

Abstract

"Introduction: Anti-tissue transglutaminase antibodies (tTG) have high specificity for coeliac disease (celiac disease). However, positive anti-tTG antibodies have been described in non-coeliac patients. Aim To assess positive anti-tTG antibodies not related to gluten intake.

Patients and methods: Retrospective review and follow up conducted on patients with suspected celiac disease (increase anti-tTG levels and gastrointestinal symptoms) but with atypical serology results, positive anti-tTG with gluten free diet and a decrease in anti-tTG levels despite gluten intake.

Results: A total of 9 cases were reviewed in which 5 cases had Marsh 3 involvement in the initial biopsy, and were diagnosed with celiac disease (Group A). They began a gluten free diet and also a cow's milk protein (CMP) free diet because of their nutritional status. When CMP was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again. The other 4 patients had a normal initial biopsy (Group B). Gluten was not removed from their diet, but they started a CMP free diet because a non IgE mediated CMP allergy was suspected. Symptoms disappeared, and anti-tTG was normal after CMP free diet with gluten intake. All the patients had susceptibility haplotype HLA DQ2/DQ8.

Conclusions: CMP ingestion after an exclusion diet can induce an increase in anti-tTG in some coeliac subjects. CMP can produce this immune response if there were no gluten transgressions. This response has also been observed in non-IgE mediated CMP allergy patients with the susceptibility haplotype HLA DQ2/DQ8."

I would lay my money on the Milk in this case!  IF you know it wasn't the gluten then Milk/Dairy is the next logical thing to removed from your diet!

But it is conceivable corn might be a problem too!

I hope this is helpful but it is not medical advice.

Posterboy,

  • 1 month later...
J Morgan Explorer
On 5/18/2021 at 4:26 AM, Anonym said:

I figured that a status update would be of interest to those reading this thread.

I had the biopsy today. Overall, they took 9 samples, 4 of which are used to test for the refractory variant of celiac disease. The doctor noted that there were no changes visible to eye in the gut, and that the gut looked completely normal to the naked eye. However, the laboratory analysis could reveal something that might explain the antibody levels.

Would love to hear some thoughts. I will post an update once I hear from the laboratory.

Hi-wondering if you found any answers?

Anonym Rookie

Hi!

I am yet to receive results from all of the biopsy samples. However, according to the results I already have the biopsy results are normal (the intestinal villi is of normal height), although there are very minor "villi regeneration changes" (I do not have a medical background so I am not sure of the correct translation to English, and frankly I am not sure what this means).  I also tested negative for refractory celiac type 2.

It is currently a holiday season but I received a brief letter from my doctor which outlines similar conclusions to what we have came to in this discussion;

  • The serology results can not be solely explained by Type 1 Diabetes, as the results are so high
  • Receiving small amounts of gluten can be the only explanation for the high serology results
  • => I should (as I have done for a couple of months while also omitting milk and soy etc.) only eat "naturally gluten-free" foods and see if my serology results come down

I mostly agree with the brief analysis from my doctor. However, I still have few questions that I will try to figure out once the holiday season is over:

  • What could the minor "regeneration changes" in the villi allude to?
  • Howcome the villi is not more severely damaged if the serology results are and have been sky high for some time?

Would love to hear your thoughts! Thanks!

Scott Adams Grand Master

Thanks for the update! 

Oats are a common source of cross-contamination, and many "gluten-free" products made in Europe use Codex wheat starch, which contains very small amounts of gluten (supposedly under 20ppm, but I tested a pizza crust made by Nestle that was positive for gluten, but listed as "gluten-free").

Overall it sounds like the first step is to review your diet in detail to be sure it's gluten-free.

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    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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