Iga Was High, Blood Was Neg For celiac disease. Biopsy Q's!

[micaela27]

so my celiac blood test came back negative for the tTG and the gliadin antibodies (my score for both was <3).... but my immunoglobulin A was sky high (613 with a ref range between 81 and 463) and my GI doctor (who didn't seem all that concerned with my high score and didn't seem like he knew too much about it to begin with) is ordering a full IG testing for all 5 of the immunoglobulins.

what will this test tell me? could i possibly still have celiac? could i possibly have something else?

also, i am copying word for word the written report from my biopsy taken during my endoscopy a month and a half ago. what does this say about a possible celiac diagnosis? my doctor said the biopsy tested negative for celiac... but this is what is written and i want help interpreting it please!

A. Duodenum, biopsy:

Duodenal mucosa with vascular congestion, focal minimal chronic inflammation

and preserved villous architecture.

B. Stomach, antrum, biopsy:

Gastric antral and fundic mucosa with mild chronic inflammation, vascular

congestion and mild reactive fibromuscular and foveolar hyperplasia, suggestive

of mild reactive gastropathy. No H Pylori organisms are seen with routine stain.

C. G.E. Juction, biopsy:

Gastric cardiac and fundic mucosa with edema and vascular congestion.

No intestinal metaplasia seen.

No squamous mucosa present.

[mftnchn]

Hi, not sure, but looks like they didn't biopsy the small intestine during your endoscopy which would be how celiac would be diagnosed.

Have you tried the diet yet?

[chrissy]

they did biopsy the small intestine---it said preserved villous architecture.

[ravenwoodglass]

You are getting something your intestines do not like. You seem to have a lot of inflammation and changes to the cell structures, the hyperplasia. You may not have gotten to a point where the villi are gone yet. This was not a normal result. What has your doctor said about it? Has he suggested that you go gluten-free for a few months and then have a repeat endo to see if some of the problems have resolved? That would be my suggestion. Another might be to contact Enterolab for testing, you do not have to be consuming gluten and they can test for specific antibody levels and also for genes. That might help clarify things also.

[happygirl]

Hi, not sure, but looks like they didn't biopsy the small intestine during your endoscopy which would be how celiac would be diagnosed.

Have you tried the diet yet?

duodenum is the first part of the small intestine, and what they routinely biopsy.

[micaela27]

ravenwoodglass, you said my intestines are getting something they don't like. now that i've had a chance to look up all the terms in a medical dictionary, i pretty much understand what my biopsy results are saying... i'm inflamed all over and my cells are overproliferating in my stomach. my villi are fine, though. so is this indicative of a food allergy? all the inflammation has to be coming from somewhere (i.e. caused by something) and i'm not on any meds, i have recently stopped my birth control, and i don't take any over the counter drugs except about 4 days this season of Claritin, which was way way after the biopsies were taken anyway.

so what's the deal? will my immunoglobulin testing indicate why i'm getting inflamed? would my Hashimoto's thyroiditis be causing this antibody flareup of my IgA??

[Ursa Major]

Your intestines will show inflammation before your villi will start to atrophy. Your results do NOT mean you don't have celiac disease or at least a gluten intolerance. SOMETHING is causing all that inflammation. My guesses are: gluten, dairy, soy (main suspects). Eliminate those for starters to see if you won't start feeling better.

[micaela27]

see, this is the problem, though!! i have NO symptoms of celiac. the bloating and/or gas i would get seem to be no more severe or frequent than my husband gets, or any other person would get on occasion. no diarrhea ever. i have had cramping twice that i can remember... ever. no pain. no food-symptom associations.

my Hashimoto's and my gastroparesis are both independently linked to a higher incidence of celiac disease, though, which is why i pushed to get tested for Celiac disease in the first place. had i not had these two conditions, i would never in a million years think i might be at risk for celiac disease, since i exhibit none of the classic symptoms.

so for me... going gluten-free seems to be almost pointless, as there's really nothing to "fix" other than my Hashimoto's or gastroparesis. and from what i know, my Hashi's can't be "fixed" by anything other than thyroid meds anyway. though.... if i had any indication that my gastroparesis could be reversed or ameliorated by going gluten-free, i'd do it in a heartbeat. right now i'm on a low fat, low fiber diet to help with the feeling of fullness and slowed digestion / gastric emptying that is the hallmark of gastroparesis.

my main goal here, outside of the obvious goal to find out any- and everything that is wrong with me, is to make my gastroparesis symptoms go away. the Hashi's is asymptomatic for me and I don't yet require thyroid meds for it. it basically doesn't interfere with my life, but the gastroparesis DOES. feeling full sucks... and thus i pursue every avenue possible (including gluten-free possibilities) until i find a reason why it happened and a way to make it stop!

[Nancym]

I can't recall where I read it but I did read that 30% of thyroiditis sufferers will have remission if they go gluten-free.

You might want to check out The Gluten File. There's more than just "classic symptoms". Lots of people have related autoimmune diseases, arthritis, and even worse... brain involvement.

Why not try the diet and see if it helps the gastroparesis?

[Nantzie]

my main goal here, outside of the obvious goal to find out any- and everything that is wrong with me, is to make my gastroparesis symptoms go away. the Hashi's is asymptomatic for me and I don't yet require thyroid meds for it. it basically doesn't interfere with my life, but the gastroparesis DOES. feeling full sucks... and thus i pursue every avenue possible (including gluten-free possibilities) until i find a reason why it happened and a way to make it stop!

I'm not clear on how gastroparesis symptoms AREN'T symptoms of celiac? Maybe they aren't on the short list of classic symptoms.

I'm not surewhat symptoms you have other than the feeling of fullness you mentioned, but according to a website I pulled up, these are some of the symptoms of gastroparesis.

Abdominal pain

Bloating

Feeling of fullness

Vomiting

Nausea

Heartburn

Reflux

Every single one of them can be a gluten reaction in someone who has celiac or gluten intolerance. I get more than half of these. There are more than 200 symptoms of celiac.

Really there is enough of a symptom cross-over that you really should give the gluten-free diet a trial run. It would be a shame for you to travel down this path only to turn around and never know for sure.

If it is the answer, or even part of the answer, or just takes the edge off your symptoms, it will be worth the effort.

I was pretty much housebound before I tried the gluten-free diet. Blood and biopsy negative. Tried the diet, just in case, just like I'm suggesting you do. All my symptoms went away including things I had no idea could be connected with gluten, like headaches, insomnia, anxiety and irritability (which I thought was just my charming personality ), balance problems, nerve pain, mobility issues, etc. All sorts of things. I have literally been given my life back. All I wanted is for my GI symptoms to go away.

And I never would have known if I hadn't tried the diet.

I hope trying the gluten-free diet ends up being an answer or at least a help to you, and that you feel better soon. There are lots of people here who find out that gluten is only part of the issue (or not the issue at all), so you don't have to have "Celiac Disease" to be part of our little corner of the internet.

Nancy

[VydorScope]

You state you are having symptoms that interfere with your life? Right? You have no answers yet right? So ummm... why not try gluten-free and see if it helps? If it does, then great! If not, you keep looking.

[micaela27]

fair enough

how long would you say i need to devote to a trial run to see whether my symptoms improve?

if it doesn't help at all, i don't want to waste months or years of my life going gluten-free with no improvement... but i also don't want to miss a possible improvement because i stop short of giving my body enough time to adjust and improve.

what's the happy medium?

[Nantzie]

Some people see improvement within a week. Some take six months to a year.

I'd say six months. If you don't feel like you could commit to six months, I'd say at LEAST three. My symptoms went away within a week, but not everyone is like that.

Nancy

[VydorScope]

One thing to keep in mind, improvement can often be GRADUAL, such that you do not really notice it until you re-introduce gluten, then (all this is based on posters here) you feel like you got hit by a massive truck and thrown from the highway into a filthy muddy ditch in the pig pen.

So when you do the trial keep in mind that part of it might have to have to be going back on gluten after being gluten free for a while.

[ravenwoodglass]

One thing to keep in mind, improvement can often be GRADUAL, such that you do not really notice it until you re-introduce gluten, then (all this is based on posters here) you feel like you got hit by a massive truck and thrown from the highway into a filthy muddy ditch in the pig pen.

So when you do the trial keep in mind that part of it might have to have to be going back on gluten after being gluten free for a while.

This is a very accurate statement for many. Give the diet a three months shot, strictly, then after those 3 months eat a single ingredient wheat product like triscuits or cream of wheat at least 3 times a day for a week. Gluten is a delayed reaction for many so just one day won't really tell you anything. During that week do not just look for GI symptoms also look for an increase in irritability or depression, muscle aches and pains, lethargy, headaches etc. There are some that are 'silent' celiacs as far as the gut symptoms are concerned, but it does not sound like you are one of them.