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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.

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Schnee0    0

Hello,

I stumbled upon these forums from Google. I have been wanting to hear some input from people with celiac disease, and I am very happy to have found these forums.

I a 17 years old (Male) who thinks that he might have celiac disease.

All throughout my life, since I can remember at age 4, I have never always had normal stools.

At age 12 I was diagnosed with lactose intolerance. Thankfully, after cutting away all diary I was no longer having problems. Probably around September 2003 I could no longer have any diary at all, before I used to take lactaid pills, now even those do not work. Then, probably since October 2003 I have had various types of stools; some diarrhea, some constipation, some normal. I was still able to function and pulled through it. In February I just got tired of it, and that is when my mother suggested taking Metamucil and that helped relieve the diarrhea. Another thing to note: From Oct 03 to today I have probably never had consistent stools every day, it was more like every two days. I was used to these symptoms by now (due to my lactose intolerance), also I was never alarmed or felt like something was wrong because it is supposed to be a family thing. Probably both sides of my family have had various gastrointestinal issues, my dad's side of the family calls it "The Family Curse". Well I hate the curse!

Now in March I was really fed up with my guts, the metamucil stopped working and the diarrhea came back. Ever since then I have been trying to figure out what could be causing this trouble that I am having.

Here are my symptoms:

Weakness

Fatigue

Diarrhea

Random stomach/intestinal pain

Whenever I use the bathroom it feels like I still have to go, there is no "ahh now my pants fit better factor" :D

Unusually smelly farts/poop (sorry for putting it so literally)

Farting more than usual

My intestines feel like there are minor knife cuts all throughout them and for some reason they refuse to heal

Whenever I wake up in the morning I get the feeling from my guts that within two hours I will need to use the bathroom, I also usually have pain in my guts that goes away within 3 hrs.

Another thing to note: My symptoms that I am having now are a heck of a lot different then my lactose intolerance symptoms

Last week I started googling stuff, and some of my first results were websites related to Gluten. I saw the symptoms and they were exactly the same that I am having now! My nearest insurance certified doctor is over an hour away and I cannot travel in this condition, so just last week I visited my local doctor and without me asking any questions or suggesting what I might have he suggested that I might have a fructose or gluten problem. That further reassured my thoughts. My town is a commuter town, its biggest attraction is a movie theater, it is impossible for me to get a gastrointelolgist here, and the local doctor does not have the tools needed to perform accurate gluten/celiac disease tests.

Does anyone think I might have celiac disease?

I would like to go Gluten Free (even though many websites say not to do it until recommended by a doctor) and see if it helps.

Thanks,

Schnee

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wwebby    0

Hi Schnee,

I haven't been to my gastro yet either, but I finally made an appointment...If you're having trouble getting a doctor, you can order some tests yourself, but it does cost money. Many people here have done that same.

www.enterolab.com

Dr. Fine is a board-certified, though somewhat controversial, gastroenterologist and researcher who can do labs on you with your stool without a doctor's referral. You can order the tests yourself. The complete stool panel is $349, though if you want to go cheaper, you could get the gluten sensitivity test, which will tell you your IgA Anti-gliadin level for $99 and the tissue transglutiminase test for $99. If both are positive, I'd say, go gluten free and monitor your symptoms. Some people think his tests are not reliable, other people swear by them. I had them done myself and it was painless and easy and I think he might be on to something because even tho' the usual tests arent' through the stool, a new study just came out on some italian researchers that are starting to do the same thing.

www.yorkallergyusa.com

I just ordered this one...it's called CDScan and it's a finger-prick blood test you can order yourself for $99. It also tests for tissue transglutiminase, but through the blood, which is one of the standard ways they test you when you get a Celiac panel of blood tests at the regular doctor. I haven't gotten my results yet, but there's a review of test process that another celiac posted on www.celiacsanctuary.com if youwant to see pictures and all that.

The "official" diagnosis of celiac disease is when they put a tube into your small intestine, and take a couple snips of tissue and examine them under a microscope for damage. However, some people feel they can "self-diagnose" by going gluten free themselves and monitoring for symptoms, or getting some of the tests I mentioned above, going gluten free, and monitoring for symptoms.

If you do get any tests, don't go off gluten yet. The tests are more accurate if you are eating gluten. If you do get to an "official" doctor for testing, don't go gluten free. Not yet at least. If you go gluten free and your symptoms abate, but then you want testing done, you'll have to go back on gluten for a number of weeks to get accurate results. Stinks, doesn't it.

Good luck in your quest!

Stay healthy,

Laura in CT

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wwebby    0

You know Schnee, I just thought of another thing. Your local doctor should be able to help you out more. All your local doctor has to do is take some of your blood and then have it sent to a specialized celiac disease lab. I would think that just about any local doctor can draw your blood for testing???

Good labs for celiac disease testing are

Prometheus Labs

Specialty Labs

IMMCO Diagnostics

Mayo Clinic.

I know most of the labs will mail a collection kit and instructions to your doctor.

Hope this info helps.

--Laura in CT

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celiac3270    4

Hi,

First off, you can't know for sure if you're Celiac unless you get the blood test or, preferably, the endocopy. If you're going to get tested for that, keep eating the regular stuff that you feel could be giving you all these symptoms. However, if you aren't going to get tested, there's nothing wrong with a gluten-free diet. If it relieves your symptoms, then it doesn't even matter if you're Celiac or not...the diet makes you feel better.

As for symptoms, some of those sound very familiar. My primary complaint was the horrible stomach cramps, often usually with vomiting, that gave me so much trouble and pain. Since first grade (I'm now 13), I had been sick ALL the time. In first grade, I would eat dinner, then feel really sick, run to the bathroom, throw up, and then feel better. Later, it became once every week, or so, I'd get sick and have a 24 hour bout with this. Other symptoms included: severe bloating, occasional diarrhea (sometimes formed stools, sometimes loose), and rather stinky gas/stools. I never experienced fatigue, personally, but realize that it's a common symptom in Celiacs. In addition, I have never been extremely puny, but in basketball games and other contact sports, it's easy for me to be pushed around.

If you choose to start the gluten-free diet without first testing, keep in mind that your symptoms won't go away immediately (if you indeed have Celiac). I've been on the diet for 13 weeks and though my symptoms aren't as bad (knock on wood), they aren't perfect, either. Anyway, if you try the gluten-free diet, be patient, give it a few months, and make sure that you are 100% gluten-free or you won't feel any different. I believe there is a good list on this website of ingredients that are/aren't gluten-free. It's not just wheat, barley, and rye: there are a lot of ingredients to check for in each product and you'll find yourself making a lot of phone calls (because natural/artificial flavors may or may not have gluten). In addition, if you choose to stray beyond the simple meats, potatoes, vegetables, and other things that you can buy in your grocery store, there'll be some added expense. Good luck.

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watkinson    0

Hi Schnee,

It sounds like classic celiacs to me. <_<

If you do get tested, please understand that you have to presently be eating gluten for the blood test to come out positive.

If you decide to go gluten free (gluten-free) without the test, make sure everything is truly gluten-free.

You mentioned Meticmucil. I also take it, even though I have no more intestinal problems since going gluten-free. I take it for added intestinenal health. I use the regular formula because the sugar free kind has aspertame. One time I ran out and went to Target to get more. All they had in stock was the Target brand, so I bought it. For the next 6 weeks I kept feeling sick. Many of the same problems were coming back, like the numbness in my hands, extreme achiness, sleeplessness, and my stomach just not feeling right. It never accured to me to check the ingredients of the metimucil. I dont know why but for some reason one night I did. It was sugar free, had aspertame, and believe it or not, Maltodestrin containing gluten. :blink: obviously I stopped that night, and of course by the next day I felt fine.

Also be aware that foods that say "wheat free" or "no gluten added'" are not always gluten free. :(

I hope you start to feel better soon. Keep checking out this site for more information.

Wendy

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The blood test proved negative for me when I was having the exact same symptoms as you. The blood test does not work well unless you already have significant damage to your body so much that it is indicated in your blood stream. I'm 18 and I just got tested this month by Enerolabs with a stool test and I am positive for Celiac. I have been on the diet for 4 weeks now and except for the occasional wheat contamination, I am feeling much better. Definitely go with a stool test. It is painless and you just mail it out.

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