Blood Tests showed positive for celiac / Endoscopy confirmed no evidence of Celiac

[Pmayer]

I'm confused as to what to do.  Here are my blood test results:  Immunoglobulin A-Normal range: 90 - 386 mg/dL -Number was 572---(TTG) AB, IgA-Normal range: 0 - 3 U/mL-Number was 9---(Ttg) Ab, Igg Normal range 0-5U/mL Number was <2---Deamid.Gliadin IgG Normal range: 0 - 19 units Number was 98.

My primary doctor told me to prepare to go gluten-free b/c I have celiac.  My Gastro told me to eat me regular diet and I don't have any evidence of celiac.  I do have a follow up blood test next for the HLA blood test to see if I have it genetically.  Can anyone share any insight on this?  There are times when I eat gluten that I feel fine and other times not so much.  In December of 2023 I ended up at urgent care b/c my stomach hurt.  Doctor put me on antibiotics and it cleared the pain.  It might have been diverticulitis.  Not sure what to do??  Thanks

 

[trents]

Welcome to the forum, @Pmayer!

The Immunoglobulin A (what we call "total IGA" for short) is not a test for celiac disease per se. It is a measure of total IGA antibodies, not just those generated by celiac disease. However, if total IGA is low it will drive down the scores for individual IGA antibody components, including those for celiac disease, and so can create false negatives. Low total IGA generally calls for additional testing to compensate for the possibility of false negatives. Your total IGA is actually on the high side so this is not an issue in your case and high total IGA is not a health concern in and of itself that I am aware of.

However, you have two out of three celiac antibody tests that are positive: the tTG-IGA at 9 and the Deamid.Gliadin IgG at 98. I agree with your primary care doc that this does suggest you have celiac disease. What needs to happen now is an endoscopy with biopsy to check for damage to the villous lining that is caused by celiac disease. This is considered to be the gold standard of celiac disease diagnosis. I am not sure why your current GI doc does not believe you have celiac disease but I tend to think it a good idea to seek out another GI doc.

The HLA blood test cannot diagnose celiac disease. It can only determine that you have potential to develop it genetically. 40% of the general population have one or more of the genes that are associated with celiac disease but less that 2% of the general population actually develop celiac disease.

[Pmayer]

HI:  Thanks so much for the information.  I did the endoscopy on 2/2/24.  He told that he didn't see any damage to small intestine.  Is it possible that i'm at the begining stages of celiac?

[trents]

13 minutes ago, Pmayer said:

HI:  Thanks so much for the information.  I did the endoscopy on 2/2/24.  He told that he didn't see any damage to small intestine.  Is it possible that i'm at the begining stages of celiac?

Of course that is possible. It is also possible that the damage is patchy and the samples taken missed the affected areas. Sometimes the biopsies are not done as thoroughly as they could be. You may also have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and shares many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out. The antidote is the same for both: Total elimination of gluten from the diet. And I think that is your next step. That is, to get serious about eating gluten free and see if your symptoms clear. Some experts feel that NCGS can be a precursor to celiac disease. Perhaps you are in a transition phase in that regard.

Edited February 15, 2024 by trents

[Carolth]

On 2/16/2024 at 4:35 AM, trents said:

Of course that is possible. It is also possible that the damage is patchy and the samples taken missed the affected areas. Sometimes the biopsies are not done as thoroughly as they could be. You may also have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and shares many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out. The antidote is the same for both: Total elimination of gluten from the diet. And I think that is your next step. That is, to get serious about eating gluten free and see if your symptoms clear. Some experts feel that NCGS can be a precursor to celiac disease. Perhaps you are in a transition phase in that regard.

Greetings , I know I cannot eat gluten products without health problems, (digestive and bowels), amongst other problems) I had a colonoscopy and blood test, and my specialist reviewed my results and said “ no celiac detected, now you can eat what you want” he didn’t believe in my being sensitive to gluten, only saying “you are a celiac or not, and you are not” I left feeling very diminished and even bought a pie from the bakery on the way home, I paid heavily for that error, and wonder why Drs differ so much in their beliefs, surely as patients, we know what we can or cannot tolerate, here in Australia most Drs will not recognise NCGS, so we go it alone without support. I knew I wasn’t a celiac anyway, as I have a grandson, and friend, who seriously have to watch their diets, and cannot have gluten products anywhere near their food, whilst my husband eats wheat products alongside my meals. Thank you for this site ❤️

[RMJ]

On 2/15/2024 at 9:22 AM, Pmayer said:

HI:  Thanks so much for the information.  I did the endoscopy on 2/2/24.  He told that he didn't see any damage to small intestine.  Is it possible that i'm at the begining stages of celiac?

Is that what your doctor said after viewing your intestines during the endoscopy, or is that the result of the biopsies where a pathologist looks at tissue under a microscope?  Did you have biopsies?  If so, have you gotten those results yet?

[Wheatwacked]

Hi Carolith.

Don't beat your head against the wall.  Fire that doctor.  Is he really old?

5 hours ago, Carolth said:

I had a colonoscopy and blood test, and my specialist reviewed my results and said “ no celiac detected, now you can eat what you want”

You won't find evidence of small intestine damage in the colon.

5 hours ago, Carolth said:

I have a grandson, and friend, who seriously have to watch their diets, and cannot have gluten products anywhere near their food, whilst my husband eats wheat products alongside my meals.

Once gluten is out of the picture you have to look at vitamin and mineral intakes.  I think that is where you will find why sensitivity differs.

[trents]

Good catch, Wheatwacke! @Carolth, a colonoscopy cannot be used to diagnose celiac disease. An endoscopy with biopsy of the small bowel lining is what is needed. A colonoscopy cannot reach up that far. The affected area is just below the outlet of the stomach.

[Pmayer]

12 hours ago, RMJ said:

Is that what your doctor said after viewing your intestines during the endoscopy, or is that the result of the biopsies where a pathologist looks at tissue under a microscope?  Did you have biopsies?  If so, have you gotten those results yet?

My primary doctor only looked at blood tests and told me I have celiac disease.   He told me to goto a gastro for an endoscopy.   I had the endoscopy done and all the biopsies also.  My gastro said there was no evidence of celiac disease.   

[Wheatwacked]

Many have had positive blood and no evidence from endoscopy.  Be thankful your primary caught it before damage .    What Are the Symptoms of Celiac Disease?

[EmilyKate]

Just stumbled across this thread and I am

in the same boat. Had a positive blood test for

coeliac disease, long story I won’t bore you with but eventually I was told to have an endoscopy to confirm the coeliac. My results have come back negative… I’ve got a follow up appointment booked in with the gastro team but basically I’m just sat here wondering can I eat gluten again or not?! Have to wait until July but interested to hear what others have experienced for the same situation. 
 

Positive Blood Test, Negative Endoscopy (biopsies were taken) 

 

 

[Pmayer]

Hey Emily.  Thanks for responding.   After careful thought I decided to just go gluten free and adapt to the lifestyle.  I’m still frustrated today after starting on March 2nd of 2024.  I do feel better but just learning as I go along.  I was in the same boat but so far I’m happy with my decision.   

[EmilyKate]

So have you just put it down to having an intolerance to gluten? Have you had a food allergy test 

[Rjjnabarmd]

Any updates?

Was it celiac or no?

[EmilyKate]

So I’ve been eating gluten free since doing a further blood test and that came back giving a positive result, they said I could go back and have another endoscopy  but just didn’t want to go through that again. I’ve been gluten free since October and do feel a lot better so have just accepted that this is the way for me now, even though results are still ambiguous. 

[Gina Curran]

Same for me too!  I was told by my GI Celatic Specialists to do the Gluten Challenge for 4 weeks eating 1 1/2 slices of bread a day and then have another Endoscopy and Genetic Celatic Blood Test the same day and see what the results show as I have been gluten free for over 9 months yet my blood work still shows positive results. Also, did an Allergy test and it showed I was allergic to several of the the same  foods: wheat, rye, oats.  I agree, I feel better not having gluten in my diet.  

[trents]

1/1/2 slices of bread is likely not enough. Current guidelines for the gluten challenge are recommending 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread. Physicians in practice are often working from outdated info.

[Rjjnabarmd]

How do you do allergy tests? The primary doctor sends you to an allergist?

[trents]

It depends on what kind of allergy testing you want done and whether or not your insurance will allow you to make direct appointments with specialists. Serum allergy tests can be ordered by a PCP using a blood draw. Epidermal "prick panel" allergy testing would need to be done by an allergist. There is also something called ALCAT food sensitivity testing. We use the term "allergy" rather loosely and differently than it is used in medical settings. 

All food allergy/sensitivity testing is problematic and the results often do not agree with each other or with actual symptoms. It's worth doing some research as to reliability before you dive into it.

[Rjjnabarmd]

My kid has been eating gluten free (taking care of cc too) but he has constant stomach pain since diagnosis (4 months)

Was wondering to look into other food allergies?

[trents]

A high percentage of celiacs can't tolerate dairy and they react to it like they do gluten. I would suggest a trial of removing that from your kid's diet for several weeks to see if symptoms improve. Same with oats, even gluten free oats, contain the protein "avenin" which is similar enough to gluten that it causes a gluten-like reaction in about 8% of celiacs. Some cultivars of oats actually contain gluten.

[Russ H]

3 hours ago, trents said:

 Some cultivars of oats actually contain gluten.

I have read research indicating differing reactions to various oat cultivars, however, nothing suggesting that some contain gluten - do you have a source for that?

[trents]

1 hour ago, Russ H said:

I have read research indicating differing reactions to various oat cultivars, however, nothing suggesting that some contain gluten - do you have a source for that?

"Similar proteins to the gliadin found in wheat exist as secalin in rye, hordein in barley, and avenins in oats, and are collectively referred to as 'gluten'. The gluten found in all of these grains has been identified as the component capable of triggering the immune-mediated disorder, celiac disease."

https://pubmed.ncbi.nlm.nih.gov/28244676/

 

"However, it is necessary to consider that oats include many varieties, containing various amino acid sequences and showing different immunoreactivities associated with toxic prolamins. As a result, several studies have shown that the immunogenicity of oats varies depending on the cultivar consumed."

https://pubmed.ncbi.nlm.nih.gov/26557006/

 

"In 2007, a study showed that all the varieties of oats tested were immunogenic, with Lampton and Ava avenins inducing lymphocyte activation similar to that activated by wheat gliadin, while Astra and Nave avenins showed less immunogenicity, but still with a measurable effect.6

In 2011, a study showed that there is a wide range of variation of potential immunotoxicity of oat cultivars. It concluded some oat strains are more toxic than others."

https://glutenfreeworks.com/blog/2011/06/20/why-oats-should-be-excluded-from-the-gluten-free-diet/

 

Silano M, Benedetto RD, Maialetti F, et al. Avenins from different cultivars of oats elicit response by coeliac peripheral lymphocytes. Scand J Gastroenterol 2007 Jun 8;:1-4

Comino I, Real A, Lorenzo L, et al. Diversity in oat potential immunogenicity: basis for the selection of oat varieties with no toxicity in coeliac disease. February 2011.

Edited April 10 by trents