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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I'm with Richard on your probability of having celiac. Now, apparently you need to be biopsy-proven to participate in some celiac studies... and I'm not sure if the tax-relef would apply to that as well. Perhaps someone could shed a light on that.
I spoke with the nurse yesterday. She is so cool and told me that if I EVER have any questions, that I can always call her.. she was awesome. Anyway, I asked her what test came back "suggestive" of crohn's... and she said it was the Anti-OmpC Iga (weirdest thing I've ever heard). Apparently if your result is less than 16.5, then you're negative. Mine was 19.8. I was negative for pANCA and ASCA. The upper-GI series (barium x-ray) includes a small bowel follow-through... I'm glad they're doing that. The nurse told me to call her when I leave the hospital and she said that she will try to get the results that afternoon. wow.
Steve, my doctor ran the tests from Prometheus too.
anti-OmpC (outer membrane porin C; uncommon in patients without IBD; more common in patients with Crohn
Just wanted to clarify and say that although this can occur it is always the case. Genetics play quite the role in celiac and you can be gluten intolerant and never develop it. I too wondered this up until recently.... I feared the risks of not going gluten free (I was positive on igg & iga), but my doctor performed HLA (gene typing) testing and gave a clear answer on whether I would ever develop it in my lifetime.
Just a side note: If your tests are inconclusive, please make sure that your doctor rules out other digestive disorders.. antibodies can be elevated for other digestive reasons, such as crohn's... you'll certainly want to get those ruled out before you determine it's an intolerance issue exclusively.
Thank you so much, Stacie for your support. My test is on Nov 2nd @ 9am. I pleaded with the scheduler for grace because of my timing issue and she got me in. The thought that acute inflamation is occurring somewhere in my body is a little unsettling... even that it is "suggestive" of crohn's. Either way.. pos or neg, I'm glad that we're getting closer to an answer. I think the difference has been getting a really, really, really good doctor. He specializes in celiac, crohn's, colitis, nutrition, internal med. I would suggest to anyone who's symptomatic of celiac and undiagnosed, to make sure that other conditions are ruled out. My celiac results were inconclusive, but it's important to remember that other conditions can cause the Igg's to elevate and they should be ruled out. Stacie, I so hope that you get your answers soon too... you'll certainly be in my prayers. Keep perservering.
I just received a call from my doctor today that the test for intestinal inflamation came back "suggestive" of crohn's. We have totally ruled out celiac disease with every test imaginable, including the HLA. He wants to do an upper GI and if that's not conclusive, then he wants to do the mini-camera test (the camera that you swallow). I have mixed emotions here about the whole thing.... but, I'm getting closer to an answer.
Wedding is in 10 days, so I'm going to try to schedule the upper GI asap. I guess that IBD can cause some of the celiac tests to show a false positive??
IGG 40 (pos)
IGA 23 (pos)
TTg - neg
HLA for DQ2 & DQ8 - Neg
Antireticulin IGG 1:20 (borderline)
HLA is a gene typing test where they check for the genes DQ2 & DQ8 (researched to be the celiac gene). If you're intolerant and you carry this gene, there is a risk that you could develop celiac (if you haven't already) later in life. If it is negative, you will not develop it, even though you are gluten intolerant and obviously have symptoms.
In the very least, I'd say you were gluten intolerant. I posted this on the York thread, but you might look into HLA testing if you'd like a definitive answer on whether your intolerance could lead to celiac. It's also important to know that for family history purposes.
If you're negative for celiac after it's all said and done and you want to feel better... then I'd say to try the diet. I'd opt for a diet change over taking a pill for symptoms anyday! If you're intolerant, you'll most likely feel a lot better gluten-free... and in my opinion should be the most important thing.
It was really important for me to have a definitive answer to whether or not I would develop celiac and I must say that the HLA (gene typing for DQ2 & DQ8) gave me that answer. I was negative, by the way. With all of my inconclusive celiac tests, I didn't feel comfortable just not knowing.
My doctor has been very open to exploring the benefits of ELISA testing from York, especially after a recent study on the benefits for those with IBS (see the site index)... I haven't yet done the York ELISA testing, but I'm seriously looking into it.
I received a call from my doctor today (less than a week from the test date!!). Anyway, it's good news! He performed the HLA (gene typing) and I'm negative for both DQ2 & DQ8. Apparently I will never develop full blown celiac.
After the wedding sometime (which is 11/6), he might want to perform the ELISA testing to see if that's where the cause of my symptoms are coming from.
I asked my GI specialist this just last week and he told me that they could run a few tests, but probably not to the extent that would prove helpful. He did tell me, however that an Allergist would be the person to see for this. There is a test by York Laboratories that tests for 100's of intolerances, called ELISA if you don't want to see a doctor for it. Remember that when they're testing for intolerances, they're looking for an IGG autoimmune response and for allergies, they're looking for an IGE autoimmune response. You might look into both.
Your GI doctor should be able to test you for celiac, lactose intolerance and some others, but for more specific testing, I'd go through York or see an Allergist.
Oh, one more thing... if you're looking into doing the York testing, you can ask your doctor to order it... maybe your GI would be open to that.
In my opinion, I think it's great that you're going back to a doctor... I'm on my 4th and hopefully final on the celiac issue. (It's difficult to find one that really knows about celiac and gluten intolerance). When if your appointment? If you feel it's important that you have accurate testing, you'd have to be back on gluten for some time for accuracy.... that, unfortunately might make you ill and I'd be the last to recommend that. How knowledgable is your doctor about celiac? They might recommend you start eating gluten again, but then they'd be able to document the effects of your experience in doing so.... which can be proof in itself