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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.

Post-diagnosis Tests
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5 posts in this topic

I just had (MORE!) blood work done - testing fat-soluble vitamin absorption. They're also going to do a bone density scan - how is this done? Anything else I can expect? I thought I'd be done with the tests...

:blink:

Amy

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Hi Amy..... unfortunately, it is par for the course where celiac is concerned....

I just went to a celiac specialist this week, he also mentioned he is going to do a bone density test on my since I have had difficult to control celiac (he's not calling it refractory, yet....) for many, many years...... he said it is quite common for our bones to deteriorate due to our malabsorption.... he of course also did bloodwork too!!! I don't mind the tests though - I feel comforted in the fact that they are staying on top of it and not just ignoring this disease.....

Have a great day!

Karen

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Bone density is a painless procedure involving bone measruements by x-rays. I wouldn't think you'd be looking at more tests unless you don't improve. If they find some sort of major nutritional deficiencies they'll probably take more blood in a few months to see if that's improved.

richard

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I'm with Karen; a doctor who wants more than a quick dx and dietary change knows what they are doing. Celiacs so often have profound nutrition issues when newly diagnosed, and they can be so easy to fix. My son took iron, zinc and folate for months, and it really helps him heal and feel better.

And refractory sprue, Karen? We saw a well-known GI at Johns Hopkins and it is her opinion (I'm paraphrasing, no lawsuits) and that of many "cutting edge" GI departments that there is no such thing. A celiac should get better (either clinically or pathologically) on a verified gluten-free diet. If you don't get better, there's more going on. Her thinking is the longer you've been sick, the longer it takes to truly recover, but long-term, the gluten-free diet should do it. Otherwise, you aren't really gluten-free, you have multiple allergies, multiple gi issues, or something. Have you contacted the Mayo Clinic? They do the most work studying "refractory" sprue and its solutions. I was amazed--they returned my emails!

joanna

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Hi Joanna.....

I would love for that to be the case (no such thing as refractory, that is....) as it would life a huge weight off my shoulders..... I think I will contact the Mayo (do they answer questions from someone outside the U.S., i.e. Canada?) I will wait though until after the colonoscopy and biopsies give us more answers that we are looking for and what we are dealing with..... I should hear within the next few days when the colonoscopy is scheduled for.....

But if it is the case where the longer you have had celiac, the longer it takes to heal, that would make sense in my case. I have had bowel problems starting as a child, anemic my whole life, diagnosed for the first time as celiac in my early 20's.... after a year on the diet with no change, he changed his diagnoses to Crohn's disease.... that is until 1 1/2 years ago when the blood test and biopsy confirmed celiac for sure.... so it really has only been 1 1/2 years gluten-free (with some inadvertent slips....). I am 41 years old now, so that is A LOT of years of damage done..... Maybe there is hope for me to see improvement yet!!!!

Karen

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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? 
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      I have not. I'll talk to my doctor about it
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