Possible Refractory Celiac Disease

[plumbago]

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?

[trents]

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 April 25, 2021 by trents

[plumbago]

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]

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]

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]

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]

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.

[plumbago]

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]

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]

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]

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]

Thanks RMJ, that article is helpful!

[tessa25]

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.

[Anonym]

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]

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]

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]

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]

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]

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]

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]

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,

[J Morgan]

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]

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]

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.