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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm A Newbie
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8 posts in this topic

Hi- I'm new here. I've suspected for quite some time that I've had 'something' wrong. I finally added 2+2=4 and figured out gluten. I've been sensitive to dairy for years and avoid that, now its gluten too.

I've lost over 50 lbs since the start of summer. It seems so much is limited now because of dairy AND gluten. I'm waiting to see a gastro in a couple weeks and I know he is going to order more tests so I need to keep the gluten going but I can NOT spend hours a day in the bathroom (both ends). The vomiting is new since august/september.

I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)

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Have you told them how sick you have been. My husband got down to 110 lbs ( he was only 145 to start with) and really I don't think he would have made it another week. They could tell by speaking with him on the phone how week he had become and the doctor agreed to let him begin the diet. The damage to his intestine was still quite obvious. Maybe you could call the GI and speak with the nurse about it. Tell her the situation... Maybe she could speak with dr and get you in sooner or he could allow you to start the diet.

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My husband had same issues as you. Bathroom 50 times a day. Literally and throwing up. Quite a scary situation to live through. He could eat nothing. I was slowly watching him starve to death. He now weighs 185 lbs!!! :). Never been that heavy ever. Dr said his intestines were one of the worst he has ever seen. Completely smooth. Good luck!!

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I've told them. Part of the issue I've spent years running around with my PCP, who is convinced everything would be 'fixed' if I wasn't anemic. :angry: . I finally got a referral to the gastro when the PCP passed me off to a PA in the office. While I have the weight to lose, and I welcome weight loss, I can not spend hours a day in the bathroom.

The gastro office was wonderful. They totally understand, but due to other issues I refuse to see a female dr so the first available male appt was 12/3. People tend to write me off as nuts since I have some psych issues but those issues are being managed and honestly, I can not make up the puking, the bathroom issues, the sweats, the dizzy, the stomach pain.

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-snort-

I too was written off with its all in your head issues.

yet i was throwing up several times a week and had "D" daily.

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I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)

I hope you get good news regarding your GI visit. Good news meaning that you find an answser to your distress. I would certainly recommend a full biopsy with 8-10 samples, should you have an endoscopy exam.

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If Celiac is your issue, no pity party is needed. It's an adjustment to your diet and shopping and good health is right around the corner. :D

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Good luck and let us know how it goes! Hopefully you can get some quick relief. My son's doctor ( ped. Gastro) said most pcps wants to beleice everyone has celiac or no one at all....guess you got the second!

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My appointment can not come soon enough. I've been compiling a list of symptoms and once I get that man cornered in the office.... He may never get to leave.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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