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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.

Another Person Confused Over Blood Tests
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2 posts in this topic

Hello,

 

I don't want to subject anyone to my life story, but maybe some background would be useful. I have no way of knowing if all my problems are related, of course, but... I'm a 26 year old female. I've had stomach issues of one kind of another since childhood (alternating between C and D), along with frequent headaches and periods of lightheadedness. I also have acid reflux symptoms, gas/bloating, depression/rapid mood swings/anxiety, trouble paying attention, memory loss, fatigue, asthma, sometimes I have pain in the middle of my chest, sometimes I have pain in the area where my spleen is, other random pains that Dr. attributed to very low vit. D levels... I've also had a rash on my shins for like 6 years. It used to come and go, but for the past few years, it just hasn't gone away. Every time it was almost gone, it would flare up with a vengeance and I just had to scratch it because it's really horribly itchy. I would scratch the flesh off to the bone if it was reasonable to do so, it's just maddening. My Dr. thought it was excema, but the cream she gave me didn't help.

 

In times of poverty, my survival mode diet has consisted primarily of bread and pasta. After about a month of this, my stomach was in constant turmoil. I was having stomach aches, and for all my years of digestive issues, I wasn't really prone to actual stomach aches. So between this and not being able to deal with the embarrassing noises my stomach was constantly making (seriously, if I don't eat it's growling, if I do eat it's making higher pitched gassy sounds for the rest of the day, I can't win), I finally went to my doctor about it. She ordered a celiac panel for me (that's all that was specified on the script, so I guess the lab decides which tests to run?). Here are the results:

 

Gliadin AB IGA                          1    (<20 is normal)

Gliadin AB IGG                        39   (<20 is normal)

Tiss Transglutaminase IGA     0.4   (<15.1 is normal)

Immunoglobulin A (IGA)         132   (70-400 is normal)

 

On the lab results, my doctor wrote: "So, stop eating gluten. Good luck." But, the Gliadin AB IGG is the only thing listed out of range, and from what I can tell from the internet, this isn't a very good indicator for celiac... Right? I haven't really talked to her about it, but honestly, she isn't really familiar with the disease so I don't think she'll be much help.

 

I've been gluten free since I got the results- about 6 weeks now. Or trying to be gluten free, since it seems like there's a lot of hidden gluten everywhere. The only thing that has improved is the rash. There is scarring, but at least my legs are finally free of bloody scabs (crossing fingers that this lasts). But, I'd also like my stomach to be better. I'm sick of it being noisy, I'm sick of looking pregnant and I'm sick of being in pain.

 

What do I do? Stay on the gluten free path and see if other things improve? Start eating gluten just to see if things get worse? Request more reliable blood testing? Do I have to call around different labs and ask what they do when someone comes in with a script for a "celiac panel"?

 

I didn't mean for this to be so long. I really hate to sound like one of those people who's too lazy to do her own research. Honestly, I really have tried, but there's so much different information that I'm having trouble compiling it and reaching some kind of conclusion based off it. My mind doesn't work the way it once did, to the extent that my boyfriend is getting worried about the severity of my short term memory loss and fears one day I won't remember who he is... Anyway. Thanks to anyone who read this.

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The  Anti-Gliadin antibody (AGA) tests are older and less specific to celiac disease compared to the newer DGP but it is a celiac test, and combined with your symptoms, and positive reaction to the gluten-free diet, I would say it most likely that you do have celiac disease. You could request more blood tests, or an endoscopy, to confirm the tests but if you are gluten-free, they won't be very accurate unless you start eating gluten again for a month or so... not a great option.

 

It sounds like your rash, possibly dh, is doing much better - after 15 years of nothing working, going gluten-free is! I think that's a sign that you are on the right track.  You said your stomach isn't better yet, but you also said you are not quite gluten-free - that could be the reason your gut doesn't feel well yet.  Also, many of us have a lactose intolerance until we are healed; you might want to try avoiding dairy for a few months and see if it helps. Some celiacs have other food sensitivities like nightshades, corn or soy... you could always consider sutting those if your gut doen't improve after you have cut out all gluten and perhaps dairy.

 

I don't advise going back on gluten to see if it makes you feel worse... you already know how you felt eating gluten and it wasn't very good. I don't think that's something you should put yourself through.

 

I do hope you feel better soon.

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