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[ShaynaL530]

I recently had an EGD for epigastric pain and was found to have a large, severe duodenal ulcer. Biopsies were taken at that time for various bacteria and diseases- the only thing that came back was moderate intraepithelial lymphocytosis and villous blunting. My gastroenterologist sent me for antibody testing, everything came back normal. 
 

Back track 7 years ago after I delivered my first child, I started experiencing rashes that turned into full blown hives covering my entire body for almost 10 weeks, all allergy testing came back negative. A nurse suggested I try cutting gluten from my diet and in less than a week the hives were completely gone. I asked my doctor at the time for testing and was told I can’t have celiac because my allergy testing came back negative for wheat, barley, and rye. I then did genetic testing on my own and found out I do have the gene DQ2, A1 2:01 05:05, B1 02:02 03:01, but I have no idea what any of this means. 
 

I have a follow-up EGD tomorrow to assess healing of the ulcer and would like to find out if I do in fact have celiac despite the negative antibodies. Although I have not been completely gluten free (I slowly started eating some gluten foods about two years after the hives incident), I do limit how much and since the biopsy results i have been attempting to cut it completely again. Can anyone tell me their thoughts on these results? Can I have celiac with negative antibodies? I wasn’t completely gluten free prior to the test. I am just worried now about my kids, my oldest experiences a lot of the same symptoms that I have. I do feel so much better on a gluten free diet- much less bloating and abdominal pain/cramping.

Thank you in advance!

[trents]

Welcome to the forum, @ShaynaL530!

The first thing that needs to be said is that allergy testing cannot be used to diagnose celiac disease because it is not an allergy to gluten. It is an autoimmune disorder that is triggered by gluten. Entirely different immunes system pathway.

The DQ2 gene is one of the two primary genes associated with celiac disease but genetics cannot be used to diagnose celiac disease since about 40% of the population have one or both of the primary genes but on 1-1.5% of the population ever develop active celiac disease. Developing active celiac disease requires the genetic potential but it also requires some kind of triggering biological stress event to "turn on" the gene or genes.

What antibody tests were performed to check for celiac disease? Can you reproduce the names, the result and the reference ranges for negative vs. positive for the test or tests? I'm asking because I wonder if a fill celiac panel was ordered or just one or two antibody tests. Many celiacs are missed because the antibody testing done is not through enough. And yes, you can have celiac disease even if the antibody testing is normal, especially when the the antibody testing is less than thorough. One thing that commonly happens in this regard is low total IGA suppressing the individual IGA antibody test scores. So, if a person is "IGA deficient" there IGA antibody test scores can be falsely negative. But many physicians neglect to check for total IGA. Another thing that can cause false negatives is if people have already started cutting back on gluten consumption prior to antibody testing.

Some celiacs have no GI involvement but only the skin rash known as dermatitis herpetiformis or "dermatitis herpetiformis". Most, however, who have dermatitis herpetiformis also have GI involvement. dermatitis herpetiformis has characteristic pustules in the center of the bumps. Not all dermatologists are familiar with it or know how to properly biopsy dermatitis herpetiformis.

[ShaynaL530]

Thank you for your answer! I can post my results, I can’t figure out how to add a photo

Tissues transglutaminase AB, IGG Result: <1.0, ref range > or = 15.0

Tissue transglutaminase AB, IGA Result: <1.0, ref range > or = 15.0

Gliadin (deamidated) AB (IGG) Result: < 1.0, ref range > or = 15.0

 

Gliadin (deamidated) AB (IGA) Result: < 1.0, ref range > or = 15.0

Immunoglobulin A Result: 105, ref range: 47-110 (mg/dl)

 

Endomysial antibody SCR (IGA) w/ reflex to titer Result: Negative, ref range: negative

Is the biopsy alone enough to diagnosis? I thought I remember from nursing school that the biopsy is the “Gold Standard” for diagnosing celiac, but maybe things have changed?

[trents]

Thanks for posting all the info. As it turns out, your doctor did order a full celiac panel and you are not IGA deficient. Immunoglobgulin A Result: 105 shows that to be the case. So, as long as you were consuming normal amounts of gluten when this blood draw was taken we can trust the test results to be accurate.

The biopsy is the gold standard of celiac disease diagnosis but there are other medical conditions, cow's milk protein (casein), some strains of oats for some celiacs and even some medications that can cause villi blunting in the small bowel: 

So, we are left with these options:

1. You are a "sero-negative" celiac

2. You have NCGS

3. Something else is causing your villi blunting.

Edited August 21, 2024 by trents

[knitty kitty]

@ShaynaL530,

If you're not eating sufficient gluten, before the antibody tests, they can be negative.  You need to be eating 4 - 6 slices of bread per day for at least two weeks prior.

3 grams of gluten a day is enough to cause symptoms but not enough to cause the antibody level to get high enough to show up in the bloodstream.  You have to be eating 10 grams of gluten per day to get the antibody levels up.

People with anemia, diabetes or Thiamine deficiency can be seronegative.  

Yes, get your daughter tested.  Celiac Disease is genetic.

[ShaynaL530]

Update: I went for my follow-up EGD today to assess healing of the duodenal ulcer. I only had a few moments to talk with my GI doctor about all of my results but he basically told me that if the antibodies are negative then I do not have Celiac regardless of my GI symptoms (that have drastically improved since cutting gluten from my diet), the dermatitis herpetiformis, the + gene, the severe damage to my duodenum (ulcer, lymphocytosis, villous blunting) he said “these are all nonspecific findings.” I also explained that I consume very little to no gluten in my diet and he explained that even one slice of bread weekly would cause a positive antibody reaction. I will ask about testing for my son anyway because he is having a lot of symptoms. As for me I guess it doesn’t matter what it says on paper- I know that cutting gluten completely improves my symptoms and also healed my ulcer.

[ShaynaL530]

Also- he did tell me after the procedure that he had decided to take more biopsies for celiac. I am not sure what changed his mind but I have now been gluten-free for 2-3 weeks so I assume they will not be accurate, will find out in about two weeks.

[trents]

" but he basically told me that if the antibodies are negative then I do not have Celiac regardless of my GI symptoms (that have drastically improved since cutting gluten from my diet), the dermatitis herpetiformis, the + gene, the severe damage to my duodenum (ulcer, lymphocytosis, villous blunting) he said “these are all nonspecific findings.” I also explained that I consume very little to no gluten in my diet and he explained that even one slice of bread weekly would cause a positive antibody reaction."

Your GI doctor is incompetent when it comes to diagnosing celiac disease. How old is he? The misinformation he is operating on seems like what was believed by the medical community 30-35 years ago with regard to celiac disease. You need to get a new doctor.

Edited August 23, 2024 by trents

[knitty kitty]

Find A New Gastroenterologist!!!!!

I agree with @trents!   Those are very specific findings important to the diagnosis of Celiac Disease.  

Besides visible to the naked eye villi blurting, celiac disease causes damage to the intestinal lining only visible under a microscope.  Maybe the biopsy pathologist is smarter and your biopsy results will show changes seen in celiac disease.  

It's doctors like him that cause a delay in diagnosis of ten years for many of us!  

Yes, get your son tested!  

[ShaynaL530]

Thank you. He is a younger doctor too so I was very surprised by his response. I will be having my son tested. Thank you so much for the responses!