Biopsy Mildly Positive, Bloodwork Negative On Gluten-Free Diet

[Noobette]

Hello! I apologize in advance for a long post. Some background: I started eating a mostly Paleo diet 5 years ago, for general health reasons. I would cheat and eat wheat on special occasions about once a month, with little ill effect.

 

One year ago, I did the 23andme genetic testing, which to my surprise, showed I carried 2 genes putting me at high risk for celiac: HLA-Dq2.5 and HLA-Dq8. This came as a surprise because no one in my family had been diagnosed with celiac, and the only common celiac symptom from before this current episode was lifelong canker sores in my mouth, which largely went away after going Paleo. I decided to stop eating wheat (and rye and barley) altogether, and have not knowingly consumed gluten in a full year. HOWEVER, I am not careful about cross-contamination; my messy teenagers still cook with wheat in my kitchen. I figured I did not have celiac, and minimizing my gluten exposure to traces would be enough to prevent me getting it (since gluten exposure is required for developing the disease).

 

Eight months ago, after a period of major stress (thanks, teenagers!), I started getting upper GI symptoms (dyspepsia, fullness/bloating/discomfort and chest pressure after eating). I had a bunch of negative testing, and tried a variety of different things (omeprazole, various supplements, low FODMAP diet) with no relief. I also developed fatigue and exercise intolerance, and lost 10 pounds (this was alarming because I was already pretty thin).

 

A month ago, I had an upper endoscopy (I’m an OR nurse and work a lot in the endoscopy room). I was very surprised when my biopsy results came back mildly positive:

• “Duodenal mucosa with focal intraepithelial lymphocytosis without villous blunting. Features are mild and not entirely specific but they can be in association with mediation effect (sic). Clinical correlation is recommended to exclude a possibility of Celiac enteropathy.”

My doctor was as surprised as I was; since I’d been off gluten for a full year, he didn’t think testing for celiac would show anything. He talked to the pathologist, who felt that celiac was the most likely reason for my biopsy results. My doc then ordered a celiac panel, which I got back yesterday: all negative. The normal ranges didn’t print out, but I saw them and I am well within the normal or negative range.

• Endomysial IgA Ab            negative
• Tiss Transglutamin IgG      <1.2
• Tiss Transglutamin IgA       <1.2
• Gliadin (deamidat) IgG        <10.0
• Gliadin (deamidat) IgA        <10.0
• Also negative: H. pylori and complete blood count (except a low WBC of 3.8, which isn't very low)

I know I went about this bass-akwards, but I never thought I had a chance of having celiac until years after I had stopped eating wheat except very occasionally. 

 

MY QUESTIONS: now what?! How likely is this to be celiac? Is there anything I can do short of a gluten challenge to get an accurate diagnosis? Is Cyrex testing legit?

 

I don’t mind being wheat-free, but being STRICTLY gluten-free sounds so much harder, especially when away from home, and I don’t want to be a pain-in-the-ass party guest if it’s not necessary. I talked to one auto-immune expert, and she thought it was likely I had celiac before, but was asymptomatic.

 

I'm going to a GI doc in a couple of weeks, but I wanted to run this by you experts before running out to buy new kitchen stuff. Any advice is very welcome!

[BlessedMommy]

It sounds like you do have celiac, if you have the genes for it and the villous atrophy. The blood is most likely negative from your diet.

 

Good luck with your GI appointment!

[beth01]

I would assume that your antibody tests would have been positive had you been eating gluten.  I would wait and see what the GI recommends.  Maybe they will want the gluten challenge or maybe they will say you are a celiac and quit the gluten for good, cc and all.  Good luck and welcome to the board.

[SMRI]

I agree, you are most likely Celiac and your diet altered the blood work results.  The question is, does it matter to you to get a firm diagnosis or not?  If not, start eating gluten-free and don't cheat.  You could look at your numbers more like a 1 year check up for a Celiac and say "wow, going gluten-free really does make a difference" .  If you want total confirmation then you can prepare yourself for feeling like crud for the next 2 months and do the gluten challenge and see what happens.

I would get your kids tested as well before they go off gluten!

[frieze]

I don't see a total IgA here...

[BlessedMommy]

There are other members here who have gotten negative bloodwork and a positive biopsy and their doctors diagnosed them with celiac. I think that unless you can find some other explanation of why the biopsy is positive, then that is pretty diagnostic right there.

[BlessedMommy]

Keep in mind that there is a 5 factor list. If you have 4 out of 5, it is solid enough for a celiac diagnosis.

 

1) Symptoms of celiac

2) Resolution of symptoms on the gluten free diet

3) Genes for celiac

4) Positive bloodwork

5) Positive biopsy

 

So if you had everything but the positive bloodwork, then likely the doctor could diagnose it from those other factors.

[Noobette]

Thanks for all the responses!

One clarification: my biopsy did not show villus atrophy, just intraepithelial lymphocytes.

BlessedMommy, I would say I have 3 out of the 5 criteria for diagnosis: symptoms (but they are vague and could be blamed on many things), genes, and (mildly) positive biopsy. Resolution of symptoms can't be tested since I've already been gluten free for a while.

Frieze, I read about the total IgA after getting my labs back. Would that be worth asking for, given that I've been gluten-free for a year and my celiac panel is likely to be negative anyway?

I'm leaning towards going full bore and cleaning/rearranging my kitchen so cross-contamination is less likely.

[1desperateladysaved]

Welcome Noobet,

 

Resolution of canker sores could certainly be one evidence of the diet working.  Perhaps you could find more changes if you recall them from early gluten free days.  Maybe you could take a list to the GI doctor if you looked at the 300 symptom list.  Your doctor seems to be up on things, not too many know that you would be falsely negative if you currently avoid gluten.  It sounds to me like you would possibly have social trouble if you did not have very decisive results.  IF that is the case a gluten challenge would be in order.  If there are reasons that you wouldn't want to do that, put them on your symptoms list!

 

Dee