Seronegative celiac disease

[Tigerlilly81]

I had a meeting with my GI today and she says everything points to celiac. But I negative for celiac and I have had many tests for it. I do carry one genetic variant for celiac. My grandmother had celiac and my father has two variants, is undiagnosed but is mostly gluten free simply by not liking gluten. I have a history of abnormal low IgA and dic thinks this is what is throwing things off. She wants to diagnose me with seronegative celiac disease.My findings are:

Low b12

Low vitamin D

Elevated liver enzymes

Intraepithelial lymphocytosis of the duodenum

Gastritis

GERD

Esophagitis

So now I need to go gluten free and see if things get better. But this seems so freaking hard...

[BabsyWabsy]

Hi Tigerlilly81,

I am in a similar predicament. I have been wheat free for years as I am diagnosed with a wheat allergy. I also have IBS/colitis which is often misdiagnosed coeliac. I was tested in unexpectedly September last year and of course virtually no antibodies. I asked for another test after ingesting barley and rye, which I can tolerate but which are far less potent than wheat gluten. The retest showed an uplift in IgA but below the diagnostic threshold. Here is an interesting paper. ncbi.nlm.nih.gov/pmc/articl....

As for going gluten free, it might help you to keep a food and symptoms diary. I see you are in US. I find the best thing for me is to cook from scratch at home using fruit, veg, dairy, meat, eggs, fish. So no burgers, fried chicken, pizza unless you make your own gf version. In UK, GF bread is improving, but is not great and has all sorts of additives. It helps to become a reader of ingredient labels. You may find wheat in unexpected places, like soy sauce and some canned soups. What is the 'permitted' level of gluten in US? Here, it is 10 parts per million unfortunately. In Australia, the limit is the lowest detectable level, which is much more sensible. One hazard is accidental cross contamination when eating out. Recently, I was out for lunch with a friend, ordered plain potatoes with my meal, and was brought chips (fries) which had been fried in the only frier they had, so there was gluten contamination. I should have thought to ask about this, but didn't. I had to scoot home very quickly and took a few days to get over being 'glutened'.

[cranberryt]

Are they doing a biopsy? That can confirm the diagnosis. If blood tests are negative and no biopsy is done I would question the dx. That said, if going gluten free helps, I guess it doesn’t matter what it is called on paper. If your main symptoms are GERD and stomach related and not gut related, it certainly could be something else. A relative has GERD from coffee, chocolate, onion and garlic. Removing those 4 items solved her issues. I have celiac and colitis and my symptoms are basically lots of diarrhea. It sounds like it’s going to take some trial and error for you. Going completely gluten free is possible, and expensive and sad and frustrating at times. But you get used to it.

[Researchfan]

Hi. I agree with cranberryt.

Just to add, gastritis and esophagitis - these conditions are usually antigen/allergen related. I’m surprised your GI hasn’t suggested a six food elimination diet for a few weeks and then reintroduction rather than just a gluten free diet.

Have you had eosinophilic gastroenteritis ruled out? It’s one condition of a spectrum of inflammatory gut disorders. It’s a rare condition but your symptoms are suggestive. (I suggest this from personal experience.)

You could well be Coeliac but this needs to be confirmed or ruled out properly. Have you had a biopsy of the upper intestine while on a ‘normal’ gluten containing diet?? That’s the only way to diagnose.

All your findings point to an inflammatory gut disorder that’s for sure. Don’t give up until you get a proper diagnosis.

I would suggest referral for igE allergy testing. May help pinpoint any sensitivities causing your symptoms in order to guide an elimination diet. Especially regarding GERD. Though allergy can also be non igE delayed type. Patch testing may be useful for this.

A gluten free diet is obviously an elimination diet but it only takes into account gluten. If all your symptoms resolve on a gluten free diet then you know. But if not further testing is needed in my opinion.

Keep us posted. Well wishes to you.

(The six food elimination diet excludes the top six allergy foods - wheat, milk, egg, soy, nuts, shellfish.)

Here’s a guide,

patient.gastro.org/six-food...