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 contacted the Arkansas support group contacts and asked for reccs on docs. I am just so frustrated. I feel like I have wasted so much time and money (and discomfort). I am not sure that I really need to hear from the DOC that I have celiacs but I am worried that there is something else I should be checking into...
I left yet another message and the medical records clerk called me back and said they would make a copy of my file for me to pick up! The nurse or doctor never bothered to call. My husband finally got a nurse on the phone and she said the biopsies did not show any damage. However, in my doped up haze I swear he said he only took four or five biopsies.
I am so appalled at this clinic. He never he mentioned the possibility of an intolerance/ false negative / etc.
I do not mind going to another Doc at all. I am for sure done with this one. However, I don't know where to go.
This doctor has me questioning myself... He said all of of my vitamin defiencies were borderline and disregarded the other symptoms.
My B12 was 272
Vitamin D was 25
T4 Free - .69
dq2 (dqal*05/dqb1*02) Pos
Dq8 (dqa1*03/dqb1*0302) pos
IGA tests were negative
My main symptoms are dizziness, tingling in feet, tired, constipated with occasional bloody stools, foggy brain, irritability, and gas.
How did you all find the right Doctor? Opinions on whether this is Celiac/gluten related?
The Doctor that I have seen for the last ten years regarding my ulcerative colitis just tested me for Celiacs. He did not listen to any of my complaints, dismissed me as being depressed, etc. He mailed me a photo-copied sheet with random check marks and will not call me back to explain the tests (that no where even mentions Celiacs). I need a new doctor! I am in Northwest Arkansas but can go to Little Rock easily.
Well.... My Doctor (That I do not plan on using anymore) mailed me results for my biopsies. It is a photo-copied sheet with x's by the appropriate boxes.
I am negative for bacteria that causes ulcers.
Biopsies were negative for H. Pylor infection...
Then, he listed options for my indigestion and and gas... (Which were never chief complaints)
I am so beyond frustrated. There is not a single mention of Celiacs on the whole page. And he will not call me back.
Before they gave me medicine to relax me before the endoscopy, he asked if I had questions. I asked him if the biopsies were negative, how would he suggest I proceed, he ignored me and said he would refer me back to my GP...that it probably wasn't GI related...
I got a part of my labs back this morning online. From what I understand (which is not much) they look to be in the normal range. The test is just called IGA - it says mine is 190 out of a normal range of (40-350). The tests for the transglutaminase ab igg/iga are online but the results are not listed - which means she got the results but hasn't put them in my records yet. My ttg anitbody iga was <3 and my endomysail lab was negative too...
Test is at 11:30... I will be back with results...Thanks for your input/support.
You know, I have not gotten as out of hand as what you are describing but I am increasingly frustrated by my health. I honestly feel crappy and crabby most of the time. I have been on anti-depressants but I know I am not depressed. I really do feel bad. I know that I have to make changes and I am prepared to do so. There will be no fooling around. I let myself have this few weeks of beer, pizza and cookies and after tomorrow.... well, I am back on my mission to becoming a much healthier happier version of myself. I Don't want my kids to remember me as a Mom who laid in bed all the time because she was too tired to play with them.
I know the gluten-free lifestyle isn't easy but if I start to feel better I know it will be incentive to keep it up. Like I said...the best news I could get tomorrow is a positive test. If it isn't, I am going to have to work a lot harder to make myself stick to it. I am not praying to be sick...just to be diagnosed.
Thank you for sharing your story. I hope your struggles are getting easier and your quality of life is improving.
I was hanging at the pool one gorgeous afternoon and received a call from my GP. She had some interesting test results. She was getting ready to tell me something I had figured out a while ago but had not wanted to remotely admit. You seem, for sometime I had noticed I felt bad after eating breads or pasta and my symptoms were getting increasingly worse. As as I said I was by the pool...so it was late Spring...I had been sick since Christmas. I started asking for tests because I was dizzy, exhausted and had tingling in my feet. The preliminary tests had shown vitamin deficiencies and low thyroid.
I did my own research. I knew that there should be an underlying reason for all of this. And I wasn't satisfied just taking supplements. Anyway, my doc confirmed (kinda) my suspicions.... My gene testing for Celiacs was double positive.
Even though I expected the results to be positive, I was at once overwhelmed. My DH immediately got me a beer (how could he know that it was a big slap in my gluten-sick face?). I gratefully drank said beer and followed it with a couple more...All the while knowing we were headed for a painful break-up...
The next day...I started my gluten-free diet. Friends were nice. They brought by every gluten-free beer they could find. I still haven't found one that will do...however, I plan on trying them all.
Thank you Irish Heart. Honestly, my biggest worry is a negative test tomorrow. I know I can do this if I hear a positive result but I know I also know my will power might fail me if I have doubts. I think that is the single most frustrating thing about this disease...a jury would hardly ever convict...almost always a shadow of a doubt! ;-)
I am having a farewell Pizza and beer dinner tonight....
I was diagnosed with Ulcerative Colitis over 20 years ago . It has gone in and out of remission several times and has ranged from moderate to severe at times. Currently, it is in remission.
Around Christmas this year, I started feeling really bad. I was not having a UC flair. I was extremely tired, had terrible tingling in my feet (especially at night), would get dizzy and my brain seemed foggy. Lost of unexplained pains too. I had some blood work done and my GP said I had a low Vitamin D Level, Low B12, and borderline low thyroid. She suggested b12 shots and Vit D supplements. However, I was worried about what had caused the defiencies. I eat fairly healthy. I asked her to run a celiac panel. The IGA was negative but the gene test read:
HLA-DQ2 (Dqa1*5/Dqb1*02) Positive
HLA- DQ8 (DqA1*03/DQB1*0302) POsitive
My GP said with the problems I was experiencing that maybe a gluten free diet was a good idea for me even though she could not diagnose me with Celiacs based on this. I did the Gluten free siet for a few weeks but decided to go and see my GI doc. He said he would rather have more conclusive tests. He ordered a Quantitative Iga test and the endoscopy for tomorrow. I have been back on gluten for about three weeks. He thinks that should be okay.
I feel like I had already started to feel better from the short time I avoided gluten. Now, being back on gluten, I am constantly dizzy, tingling is back, I have so much gas. I do not get diarreah but get very bloated. My appetite is huge.
I guess common sense dictates, that no matter what the test results are tomorrow that a gluten-free diet is probably a good choice for me? But if the test is negative and my doc doesn't seem to think this is my problem...where do I go from here?