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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 Got My Results Don't Know What To Do Next, Please Advise I'm Lost
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3 posts in this topic

Hello again

 

If anyone could offer any advice I would really appreciate it, I’m exhausted both physically and mentally at this point.

 

I have been suffering with digestive issues for around 6-7 years (I'm 24), however over the last 3 years my health has deteriorated, I am frequently fatigued and my entire body aches, as well as nausea, heartburn, stomach pain. My doctor has found that I have vitamin D and  Iron deficiencies despite having a good diet. I was tested for celiac disease, I asked for the full screen but was only offered the tests below (my results are below)- 

 

Anti-tissue transglutnase- 0.1U/ml  0.00-7.00/ml

 

IgA- 1.52g/L  0.87-4.12g/L

 

Serum Ferritin- 10ug/L  

 

Vitamin D- 17.9 ug/L 

 

Neutrophil count- 2.01 ( just outside normal levels) 

 

 

Anything strike anyone from my results?

 

I have experimented with a gluten light diet, only for 1 week after the tests came back negative and I seemed to have a positive response, my energy was much higher and I felt much better, this could be a coincidence though. I would like a full coeliac screen, and if possible the genetic test for coeliac disease. Do you think this would be a good next move?

 

 My doctors have been I'm afraid to say a little unhelpful, I really do suspect celiac disease but because the test was negative I'm struggling to get them to investigate further, I have been referred to a gastroenterologist but this won’t go through for a while yet and the tests aren’t available on the NHS anyway so I’m going private (for the tests). I'm back eating gluten now and feel awful, but I need a definite diagnosis otherwise I could risk masking the real problem and there defiantly is one.    

 

Do you think I should let it go as the result was negative?

I’m more than a little lost right now

Thanks

Tally

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Did they test your B12 levels? it can mess you up just as much as low Vit D levels. Although low Vit D puts you at risk for a lot of serious disease so you best fix that asap. Check that B12... It can make you so tired that you can't sleep. Also you might have helicobacter or in the end it could be gluten. The tests are pretty random anyway. If you feel better without it then you are better without it. 

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The tTG IgA catches 75-95% of all celiacs, so it could be possible that you are one of the minority. Could you have the tTG IgG run? Some celiacs are positive only in the IgG versions of celiac disease tests. The deaminated gliadin peptide antibody tests (DGP IgG and DGP IgA) often catch cases that the tTG IgA can miss. If you get these tests done, makes sure you are eating gluten in the weeks prior to testing or you could have a false negative. There's always the biopsy too.

If you are done with testing, then I old advise the gluten-free diet for a few months (6 is good) to see how you improve. Non-celac gluten intolerance (NCGI) can cause the same health issues as celiac disease including vitamin deficiencies.

Good luck in whatever you do. :)

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    • 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
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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