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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.

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7 posts in this topic

Hi all,

My name is Ben, I'm 27 years of age.

Going back a couple of years now, I started to notice that I had a bout of diarrhea pretty much the moment I had finished eating my lunch at work. At first I put it down to some sort of sickness or - heaven forbid - simply signs of age! The diarrhea would never last (like when you get a proper illness) - it would pretty much vanish the moment I had been to the toilet.

Two years later I'm still experiencing it. I noticed that it was always after I had eaten my lunch. I also noticed that I didn't tend to get the same problems over the weekend (which I realised could possibly because I don't eat the things I eat on a weekday, over the weekend [i.e. sandwiches etc] as I tend to have cooked meals on the weekend).

Recently however, I have started having the same problem but in the morning - when I prepared my sandwiches/lunch for work!

I have no idea why it has taken me as long as it has to do anything about it, but this morning I decided to "Google it".

My first search bought up lactose intolerance. Reading that, some symptoms did make it sound a possibility. Then it had a link to IBS. This sounded less like my issue in all honesty. Finally I seen a link to Celiac Disease. By the time I had read the article I was 99% sure this is what I suffer from.

Going by the sypmtoms, I should probably consider myself quite lucky. My symptoms are literally limited to diarrhea. I don't get many headaches so those that I do get are unlikely (well, I think) to be as a direct result of Celiac Disease. I am however tired ALL the time - so I guess this could very well be a symptom related to it also.

However - and I'm not sure if this is possible - as I mentioned earlier, I've now started getting a bout of pretty much instant diarrhea the moment I even TOUCH bread!?!? For around the last 6 months (maybe a little longer) I get a bout come on the moment I start to prepare my sandwiches. I know it might sound insane, but I definitely don't eat anything when I'm preparing them so it's all that I can think of?! Is this known/common??

Given the above, do you think it sounds likely I suffer from Celiac Disease?

I guess I should probably still see a doctor just in case, but from what I've read I personally think it seems as though I am a sufferer.

I must admit, it's a fair daunting thought as it's pretty much a lifechanging condition. Obviously all of you will know exactly what it feels like but - yeh - did it feel this daunting to many of you?!

Thank you so much for taking the time to read. Hopefully I'll hear some of your replies shortly.

Many thanks,

Ben

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Welcome Ben!

You certainly could have Celiac Disease or Non-Celiac Gluten Intolerance.

It is VERY important to have your doctor order a full celiac blood panel BEFORE you remove gluten from your diet. The antibodies measured in these tests are produced in reaction to gluten ingestion.

Also a good idea to be tested for nutritional deficincies - celiac can cause malabsorption issues.

Hang in there - make sure all tests are completed and then remove ALL gluten for at least three monts as elimination is the only test for NCGI.

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Welcome Ben!

You certainly could have Celiac Disease or Non-Celiac Gluten Intolerance.

It is VERY important to have your doctor order a full celiac blood panel BEFORE you remove gluten from your diet. The antibodies measured in these tests are produced in reaction to gluten ingestion.

Also a good idea to be tested for nutritional deficincies - celiac can cause malabsorption issues.

Hang in there - make sure all tests are completed and then remove ALL gluten for at least three monts as elimination is the only test for NCGI.

Thank you for the reply Lisa :)

I'll take your advice and get a doctors appointment asap! I will also continue with my current diet until I've see the doctor.

Thanks again!

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Welcome to the board. I agree that getting tested is a good idea. It may not be the making of the sandwiches that is getting you every morning it may be the timing. There are some of us that will have D every morning on gluten, after any gluten meal, alternating C and D or even just C. Do give the diet a good strict try after all celiac related testing is done as false negatives are not uncommon.

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Greetings Ben,

I sure hope you have discovered the solution to your problems before it got to bad. Please let us know what happens for your testing. I have reacted to having barley flour in the same room, so I don't think it is impossible to have problems when preparing sandwiches. After testing maybe you can bring a thermos full of warm food for lunches.

Get well,

Diana

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Yes, I found it daunting when I went through the list of symptoms! It explains 20 odd years of symptoms.

It does start to get manageable, and you have some time to read and prepare while you get testing done. Someone will be along with a good list for you soon...

The folks here are great for any wobbly moments as well as great advice.

Welcome and good luck with some answers

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Here's the list of the celiac tests to be done:

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

Do get all of them (insist) because sometimes you end up positive on only one or two - but that's all it takes. :)

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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • 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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