Positive blood test about a month ago but negative biopsy

[Nattyd]

After my biopsy I went gluten free and it’s been three weeks so far and I feel the bloating is a little better. Do I have celiac or not? If I do go gluten free because of the negative biopsy do I have to worry about cross-contamination or eating gluten once in a while?

[trents]

Positive blood test with negative biopsy is not uncommon. It can happen if the damage to the small bowel mucosa is not yet global (i.e., it's spotty) and the doc doing the biopsy didn't do a thorough enough job to get samples from a number of areas. I also wonder if you are gluten sensitive but have not yet developed celiac disease. I'm not sure if gluten sensitivity can produce positive blood antibodies.

Edited January 5, 2021 by trents

[GFinDC]

Hi,

 

I suggest you stay strictly gluten-free for 6 months and then have your blood tests re-done.  If there is a significant decline in the anti-gliaden antibody levels then it seems gluten is definitely a problem for you.

Anti-gliaden antibodies don't form in gluten sensitivity to my knowledge.

[trents]

3 hours ago, GFinDC said:

Hi,

 

I suggest you stay strictly gluten-free for 6 months and then have your blood tests re-done.  If there is a significant decline in the anti-gliaden antibody levels then it seems gluten is definitely a problem for you.

Anti-gliaden antibodies don't form in gluten sensitivity to my knowledge.

GFinDC, if anti-gliaden antibodies don't form from gluten sensitivity, whey would declining anti-gliadin antibodies indicate gluten sensitivity. Did you mean to type what you typed?

[GFinDC]

2 hours ago, trents said:

GFinDC, if anti-gliaden antibodies don't form from gluten sensitivity, why would declining anti-gliadin antibodies indicate gluten sensitivity. Did you mean to type what you typed?

Hmm, perhaps I should have worded that differently.  Declining antibodies would indicate possible celiac disease, not NCGS.  There are no antibody tests for NCGS that I know of.  The anti-gliaden antibody tests are for celiac disease only.

We don't really know what particular tests the OP had yet.  But DGP IgA, DGP IgG and the EMA test are for celiac disease.

I think there was research on the possibility that NCGS might be an innate immune response.  And there is the fructose malabsorption theory for NCGS also.  But neither of those would use anti-gliaden antibody tests to determine identify them.

The endoscopy testing for celiac disease looks for damage caused by anti-gliaden antibodies in the gut.  If the damage is happening elsewhere, the endoscopy is useless. An example is DH 
(dermatitis herpetiformis), the skin manifestation of celiac disease.  In DH the IgA antibodies deposit in the skin and cause lesions/rash that is very itchy.  The gut may not show any damage.

There is also gluten ataxia, where the antibodies attack brain cells.  An endoscopy will never show that damage either.

So an endoscopy is good for diagnosing the gut version of celiac disease.  But it does nothing for diagnosing the skin or nerve cell versions of celiac.  One article I read said that only about 30% of celiacs have the gut damage version of celiac disease.  So most are not going to be caught by an endoscopy.

Writing this for other readers Trents, I think you are aware of these things already.

Edited January 5, 2021 by GFinDC

[trents]

Thanks for the response, GFinDC. Very informative. Do you know if those celiacs with DH or ataxia will necessarily not have gut damage? Is it either or or can it be both and?

[trents]

Wait a minute, GFinDC. By definition, celiac disease is an autoimmune condition that damages the small bowel mucosa: "Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine," from https://celiac.org/about-celiac-disease/what-is-celiac-disease/

So DH or ataxia in and of themselves do not constitute celiac disease nor are they alternate forms of celiac disease. There isn't a "gut version" and an "ataxia version," and a "DH version." Rather,  are secondary manifestations of celiac disease present in some people in addition to SB mucosal damage.

It would seem more accurate to postulate that gluten sensitivity, like celiac disease, can produce DH and ataxia.

[Scott Adams]

Elevated antibodies and negative biopsy to me would mean you're definitely gluten sensitive, as the antibody tests are very specific to your body's autoimmune reactions that are trigged gliadin consumption. You are in the grey area where doctors can't say "celiac disease," but they also cannot say that you are not gluten sensitive. Some doctors in these instances might tell you that "everything is fine, no celiac disease, keep eating gluten, you're lucky." I would tell you to try a gluten-free diet for a while and see if your symptoms improve, and if they do consider staying gluten-free. If you really want to be sure, after a few months gluten-free add gluten back to your diet and see what happens (and get re-tested).

[GFinDC]

2 hours ago, trents said:

Wait a minute, GFinDC. By definition, celiac disease is an autoimmune condition that damages the small bowel mucosa: "Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine," from https://celiac.org/about-celiac-disease/what-is-celiac-disease/

So DH or ataxia in and of themselves do not constitute celiac disease nor are they alternate forms of celiac disease. There isn't a "gut version" and an "ataxia version," and a "DH version." Rather,  are secondary manifestations of celiac disease present in some people in addition to SB mucosal damage.

It would seem more accurate to postulate that gluten sensitivity, like celiac disease, can produce DH and ataxia.

Ok, seems logical.  But, in cases of DH it is common that gut damage is minimal or non-existent for a period  of time.  Eventually the gut damage may appear and create ongoing GI symptoms.  This is why the testing for DH includes a skin biopsy vs endoscopy.  The skin rash is usually the first indication.   You can't have DH without having celiac disease.

The ataxia situation is similar.  The attack on the brain cells may be independent of GI damage for while.

The process is the same though, an auto-immune attack on the body.

Hadjivassiliou M, Sanders DS, Grünewald RA, Woodroofe N, Boscolo S, Aeschlimann D. Gluten sensitivity: from gut to brain. Lancet Neurol. 2010 Mar;9(3):318-30. doi: 10.1016/S1474-4422(09)70290-X. PMID: 20170845.

https://pubmed.ncbi.nlm.nih.gov/20170845/

 

Edited January 5, 2021 by GFinDC

[GFinDC]

@Nattyd,

Sorry we are getting into the weeds some Nattyd.  IMHO if you have positive anti-gliaden antibodies results then you are on the road to eventual GI damage or some other manifestation of celiac disease.  Anti-gliaden antibodies are not normally prominent in non-celiacs.

Can you post your test results and the result ranges?  Labs all have their own unique result evaluation ranges so the results are meaningless without the ranges.

[eah4me]

Hi!  I had positive lab work, specifically my DGP IgG was elevated at 51.  My genetic testing was also positive for celiac.  But my initial biopsies were negative.  My doctor told me I didn't have celiac.  I too went off gluten after my biopsies and found improvement in my symptoms.  After 8 months my GP decided to repeat labs and my DGP IgG was even higher.  I ended up seeing a GI at a celiac center for another opinion.  He had me do a gluten challenge and then redo the biopsies.  I initially had 4 taken.  The second GI did 8 and I got a positive result.  So I do have celiac after all that. Just thought I would share my story!

[trents]

eah4me, thanks for this post. It really corroborates what a number of us have been saying. That is, damage to the SB mucosa can be spotty rather than global. And if the doc doing the biopsy is inexperienced and doesn't realize this, he or she might not sample enough nooks and crannies to catch the damage.

[DJFL77I]

On 1/5/2021 at 10:49 PM, eah4me said:

  After 8 months my GP decided to repeat labs and my DGP IgG was even higher.

were you still eating gluten at all or going out to eat.. there should be a significant drop noticed after 6 months... not necessarily reaching 0 yet.. but a good drop