Will A Scope Show Celicacs

[DMarie]

Hi,

I have had a host of medical problems for some time now (digestive issues/allergies/constipation, etc). Part of my problems likely stem from the fact that I was a Bulimic (eating disorder) for most of my teen years and sporadically into my 20's. When I eat wheat, I have a range of reactions (to minimal, to a headache within about 20 minutes after I eat, to a punch drunk feeling later on in the day, to occasional stomach pain (rare), to nausea (again, more rare)).

I am hypothyroid (Hashimoto's, autoimmune disorder...body attached it's own thyroid). I have slow digestion (had a stomach function test done). I really don't show many food allergies (skin test, just a few reactions, which are more like intolerances that allergies...I can eat the food on a rotation basis and not have to many problems). I did not show up as allergic to wheat. When I was a bulimic, I binged on mostly foods with wheat (high carb) and also sugar. I have always had a problem with constipation. I am on Prevacid for acid reflux and Zelnorm for the constipation.

I saw a post from Augie on another message where she indicated that she had some of the same symptoms I note (and she noted they were not the "typical" celiac symptoms). She said, "I was treated for reflux for a long time and then was told to have my gallbladder removed since I had gallstones (which were there for years and never caused any pain). My symptoms weren't "classic" celiac symptoms, but the more you learn about this the more you realize that there are no "classic" symptoms---everyone is different. I had constipation, not diarrhea and was gaining weight (from bloating) not losing weight. "

The doctor I see for my thyroid has indicated that he didn't think my problems with wheat were celiac's, but thought that we should test for allergies (dust, pollens, molds, etc) as perhaps there was a reaction going on with items containing wheat as wheat is a grass and if I have the other allergies...well, pollens can be on wheat when it is processed, and so on (as best I can remember his description). I also saw a doctor at a digestive disease center. Both he and the thyroid doctor agree that my problems most likely stem from the eating disorder. The doctor at the digestive disease center also indicated that he didn't think it was celiacs, as I didn't have the normal symptoms (he was looking for diarrhea specifically. He said if I had diarrhea after eating wheat, he would be looking at celiacs).

If I am still having problems and go back to the digestive disease doctor, who did seem very patient and explained things and seemed to listen and really want to help...he mentioned that we might consider doing some sort of "scope" (not a colonoscopy) to see what was going on down there. He said we could do some sort of scan with a barium drink, but the scope really allowed him to see what was going on. Would a scope, looking at my stomach, show Celiacs? Perhaps I should take him up on this. Otherwise, since I don't have the typical symptoms, what do I do next? I don't think I can test on my own, too much $$ right now (spent a lot of $$ just trying to get to the point I am now)...would need to be covered by insurance. Also, with all doctors saying they don't think it is Celiacs, my husband would definitely think it a waste for me to go off on my own when doctors have said this isn't it. (I have played my own doctor before, once that involved much $$, no results...my husband is more traditional, stay with the doctors). More or less the last thing I said to my husband about this is that even though the doctors say there should be no reason that wheat bothers me, I know it does, so I should limit my intake or avoid it, and that is that. Yet...I would like to know if it bothers me, why does it bother me???

Any suggestions about the scope? Would that show celiacs if there is damage? This doctor listened, but I am not sure how well he would listen if I tried to bring this up when he doesn't think celiacs, and if I ask for tests to prove/disprove it. Also, it is my understanding that test might not show anything anyway, and we would be using a standard lab that insurance companies use, not a company who specializes in diagnosing this. He was very complimentary that I seemed to really have a handle on things that were going on, knowledgeable about some of the medical things...so perhaps he wouldn't write me off as a flake who just needs to be put on prozac!

[KaitiUSA]

I think you need to see another doctor who knows alot about celiac. There are not specific symptoms that you have to have in order to have celiac. Everyone has different symptoms and some people have none at all. I also have a thyroid disorder. These are highly connected with celiac and what you are describing does sound like celiac. You do not have to have diarrhea and so forth like some doctors seem to think.

Allergy tests will not show up celiac because celiac is not an allergy..you need a full celiac panel done first. These are the first tests you need to have done. Some of these tests are specific and the false positive rate is slim to none.

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

After this they usually do a biopsy...they stick a tube down your throat and look at your small intestine and get a tissue sample to see if it is damaged. Now if this biopsy comes back negative that does not mean you do not have it...you could have no damage yet or sporadic damage and they missed it. They use this to determine the amounts of damage though.

There are over 200 symptoms with celiac and there is no "typical" celiac symptoms because everybody has different ones. Some doctors say since you don't have diarrhea you can't have it....FALSE....some people get the opposite. Some doctors say you don't have weight loss so you don't have it...again FALSE...some people have weight gain.

Get this blood test (don't go gluten free until after testing) and see what those tests show.

Good luck and hang in there...you will find alot of people on here know alot more then most doctors when it comes to celiac.

[DMarie]

Hi Kaiti,

Thank you for your response. I will have to do some looking to see if I can't find a doctor in my area that is more familiar with Celiacs.

I had been by and large gluten free for some time (not totally, but the amount of gluten that I ate was very small...usually if I had some gravy that used flour as a thickener, or condiments). I started eating wheat again (or being sloppy with avoiding it) about 2 months ago. Since everyone keeps telling me there should be no reason I can't eat wheat...and I am so tired of it all...I just thought fine...I'll eat wheat again. But I know something isn't right with it.

I'll read more on the site so that I understand what those tests are and what they are looking for.

Dawn

[mommida]

I agree with what Kaiti posted and if you contact a Celiac Support group in your area for a reliable Gastro. with Celiac experience.

L.