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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Have Steatorrhoea?
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mushroom    1,205

It is a common condition among gluten intolerants before they realize they are gluten intolerant :)

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kitgordon    32

This was my primary symptom, and its recurrence is how I know when I have been accidentally glutened.

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Roda    186

Not before diagnosis. But a year later I developed it. Long story short I discovered I was reacting to gluten free oat cross contamination in gluten free products. I went on prescription creon and ate very clean and in three months time it cleared up. If I get CC's from gluten now or oat CC then it comes back.

I just had my gallbladder removed on Wednesday. I did have steatorrhoea occasionally from that also, but knew I wasn't getting CC so I knew it was from the gallbladder.

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Persei V.    8

I had. Only when I'm glutened now, though... This is how I know I ingested gluten and not some random other thing I can't eat (I have several other intolerances: coffee, honey, spice and everything nice, also cherries :/).

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Thank you so much guys for your replies. I've tried Crohns and UC forums and when I input my symptoms, no one responds. I thought I was alone until I seen your replies. I also forgot all about the Celiac site until now (short-term memory, apparently). But, let me add a little more to this thread and see if you guys can still relate. Hopefully you can, cause I'm completely lost and feel very alone.

From the top: I started having diarhea symptoms eight years ago when I went through a rough emotional period in my life. I continued having loose stools all the time, and couldn't get rid of it, so I basically came to the conclusion that I'd just have to deal with it. I started taking Immodium to help regulate my bowel movements so I wouldn't go all the time. It helped, and I still take it today.

About two years ago I started having issues with hypoglycemia, and up until I got a family doctor and he told me to stop eating so many breads and sugary drinks, that's been much better. But then about a year ago I started noticing a little weight loss. I originally weighed 140, now I weigh 132. My face looks all sunken in because of the weight loss, and I'm pretty small framed to start with for a 33 year old man, so me losing weight is probably the worst thing for my looks. But, its all apparent in my face more than anywhere else (my doctor says men lose weight in their face and hands first).

Anyway, my doctor runs all these blood tests and nothing comes back abnormal. Between having a five hour sugar test (which is like 5 tubes of blood, I think) and six or seven more tubes of blood taken from me in the same day, you'd think they could've found something. The only thing he said was my rheumatoid factor was a little off but nothing significant enough to worry about. He refers me over to a gastroenterologist. I see him and tell him my symptoms. He does ONE test on me, the fecal fat test, and a coulple of other blood test but I don't know what, and the nurse calls me up a week later. She says my results came back and I did have more fat in my stool than I was supposed to have, and quite a bit.

I go to my doctor after the results and he walks in saying, "you know, most people that come in with fat levels this high in their stool have been smoking or drinking for twenty years". I'm like huh? Worry starts settling in..no longer comfortable.(I had pretty high levels of fecal fat in my stool and this is what he was referring to). He asked me if my doctor had tested me for celiac and I said yes in my blood, but it came back negative. I asked him if he thought it was that and he kinda shrugged his shoulders and said he wouldn't know why celiac would be an issue if my blood tests for it came back negative.

Although he didn't say, "you don't have celiac", he didn't remove it entirely from the equation. He's ordered me to have an MRI, an ultrasound of my lower abdomen, and a colonoscopy as well as a endoscopy later next month. But, he kinda left me in the dark and didn't give me any idea what I should be thinking. When you tell someone that's in the thirties that most of the people that come in with a fecal fat level like mine have been smoking or drinking for twenty years (neither of which I do), you have to start being concerned about your well-being...Anyway, he didn't act like he knew what was going on with me by the amount of tests he's setting me up with.

Here's where I need help though. I have absolutely NO abdominal pain, and only very rarely do I. I eat fine, have a healthy appetite, sleep well, have no pain anywhere else, no blood in my stool, no pale colored feces, no skin disorders, or anything. My biggest symtoms right now are weight loss, and diarhea - weight loss being the one I'm most sensitive about, since I'm already pretty small framed anyway. I just need some moral support I guess cause I don't know what's going on and no forum except this one so far has really responded. My family is starting to look at me like, "what's going on with him, he looks kinda sick", and all I can do is tell them its all fine, but I honestly don't know if it is with my doctor acting like he doesn't know what's going on.

Here's my symptoms:

diaerhea

malabsorbtion of fats (and probably other things)

foul-smelling gas

weight loss

occasional eye-pain in one eye or the other

joint pain at times

There may be more but I don't know.

Currently, I'm taking Creon. My doctor told me to take up to 9 a day, but I have only been taking about 4 a day, two with each major meal since I'm waiting on my insurance to cover it. Right now I'm just using samples the doctor's office has given me, and 9 a day isn't practical. I think 12 come in a bottle and they usually give me two bottles. Three days ago I up'd my caloric intake, and now I'm eating 2500-3000 a day. I'm trying my best to stay away from fatty foods, though before I ate more thinking if I was losing fat, eating more would replace them. Bad idea, apparently because right around that time my doctor gave me the fecal fat test.

I don't know, anything you guys can add to help me cope or know it's not that big of a deal would be great. I asked my doctor if I should slow down on eating gluten, and he said if it was celiac I couldn't have ANY, and he acted like I treated the idea to lightly, which I didn't. I just need some moral support, I think. Thanks again guys.

- Jay

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Roda    186

It might be a good idea to ask for the full celiac panel to be redone. So many people do not get the whole thing done. These tests include: total IgA, IgA/IgG tTG, IgA EMA, IgG/IgA DGP. Also when you have your scope you need to make sure the endoscopist takes a minimum of 8-10 samples from the small bowel alone(in different spots). They will biopsy the esophagus and stomach also which is pretty standard, but the small bowel biopsy unfortunately is not routine.

Hang in there and read all you can!

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mushroom    1,205

Out of the 300-odd symptoms of celiac disease, your six are included. (Obviously, not everyone has all 300 and no two people have the same set of symptoms, it seems.) Do keep eating gluten until all the tests are done and I agree, a repeat (full) celiac panel is called for, although it is possible also to have these symptoms with non-celiac gluten intolerance where all your tests will be negative and yet you still can't eat gluten without problems.

Don't believe anyone found their manners to welcome you to the board, so let me do so now :)

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I have a question to ask in regards to another symptom I've been reluctant to ask because I think people think I'm crazy when I mention it. After eating something, I sometimes have a metallic taste in my mouth that is mild to moderate, and goes away after a little while. I originally asked my family doctor about it and he tested me for various metal poisonings, all of which came back negative. I haven't mentioned it to my gastroenterologist because I completely forgot, but I will next time.

It all started about two years ago when I started having hypoglycemia issues, and so I figured it may have had something to do with ketosis? But, now I don't know. I recently read where a metallic taste in your mouth after eating is a sign of a food allergy. There's also something called Anaphylaxis, which is a allergic reaction to certain foods. What should I think of this, and should I offer it any significance? Any advice would surely help. Thanks again guys!

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I'm not sure, but because all of my other results came back negative, maybe they didn't see a need to run anymore blood test. But, here's what I'm thinking. According to my doctor, and how he explained it, people that suffer from celiac disease have an allergy to gluten, so its like when a person is allergic to something and their throats start to swell, etc. Well, if I'm tasting a metallic taste in my mouth after eating foods containing gluten, that would be a severe sign of a food allergy - possibly celiac and gluten, specifically.

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mushroom    1,205

Well, I have to question your doctor's understanding of celiac if he calls it an "allergy" to gluten. Celiac is in fact an autoimmune response to gluten, not an allergy. This autoimmune response causes the body to attack itself in various ways by producing autoimmune antibodies, none of which to my knowledge will cause your throat to swell. This is why it's important not to toss that "allergy" word around willy nilly because it implies a totally different kind of reaction. Now it is possible to be both celiac and allergic to wheat, but they are two very different reactions.

As far as the metallic taste, do you have any amalgam fillings in your teeth? Sometimes when these start to break down they release a metallic taste when chewing. I had all mine removed.

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I do have fillings, actually. But I'm not sure if that's it. Here's what I've done to test if it really is gluten making the taste:

For the last three days I've had close to no gluten, and I've had no joint problems, and little to no tasting of metallic tasting in my mouth. Starting tomorrow, I'm going to eat exactly what caused my problem of tasting metallic in my mouth, which was eating of two pumpkin spiced doughnuts from Krispe Kreme. Both probably have significant amounts of gluten, since it's heavy cake.

It's not going to tell me if I have celiac disease, but it will help me better understand why I'm tasting it to begin with.

And I don't know why my doctor explained celiac disease to me the way he did, using people that allergic to things similar to celiac. He explained that when people can't have gluten, their bodies react to it the same way when someone is allergic to something, and he specifically said, "like when people eat something their allergic to, their throats begin to swell." Whether he meant this in the sense of my intestines swelling, or that I'm allergic to gluten, I don't know.

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