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've been struggling with stomach cramps, severe D and just plain misery fatigue and haziness since Feb (Sept now) so far most tests show nothing... Best guess is bacteria over growth.... My celiac markers in blood were slightly elevated so went gluten free... Desperate for any relief... That helped for about a week, then all symptoms were back... I've done at least 5 courses of different antibiotics including one of which was IV when in the hospital from symptoms with white blood cells through roof... Kept in hospital 3 days until fever broke and WBC count came down... Anyone have success treating this??? Any hope in eating ever bc right now as some others said even water gives me pain that doubles me over!
When my rash started it popped out over night and was the size of a large dinner plate if not bigger and was a full out monster with blisters and all. My hypothesis is that the CT scan I had the night before ending up in the hospital must of had gluten in it and was the cause of my problems. That was the first time I had the rash. It was the second time in a week I had to drink the contrast... ironically enough they were trying to figure out what was going on with my stomach/intenstines. At that point the dr called it a fungal rash, which reading the previous posts is a common theme... like eatmeat4good and Ghost... a few others as well... ring worm is fungal as well. Then they said it was hives.. even though I was already on zyrtec at the time.. but I am sure it was HD in hind sight. Hindsight is 20/20.
Well my rash was raised and had almost boils like. Was very hot to the touch hotter than the other areas that were not affected. It was the itchiest thing in the world and did not respond to anything I put on it.. the best thing was just a cool wet cloth that I put ice cubes in it. I had it on the small of my back that went all the way down my buttocks. One doctor who looked at it thought it was fungal, another thought it was massive hives... only post gluten sensitivity/possible celiac have we determined that it was DH rash. Mine also finally resolved after about 2 weeks and faded, only to reappear in the same exact spot!
OK let's see... I was diagnosed with Grave's Disease, an autoimmune thyroid disease that causes the thyroid to be overactive about 16 years ago. I had my thyroid removed several years later and now take synthroid. About 7 months ago I started to have severe stomach cramps and constant D several times a day even on imodium. Went through every type of stomach/intestinal testing... colonoscopy - negative for crohns, lower bowl series - no adhesions, 2 cat scans - both normal. Then after the first catscan ended up in the hospital with white blood cells through the roof, high fever, severe stomach pains, white blood cells in urine. While in the hospital a rash appeared on the small of my back and down my buttocks... EXTREMELY itchy and HUGE! The first doctor who looked at the rash called it fungal, when I was released I saw my dermatologist and she called it hives.... So I was treated with antibiotics and fever broke, rash eventually went away. 2 weeks later everything was back including the rash. From that point on I was still sick and nothing really gave me relief. At that point they felt it was bacterial overgrowth because I had a slight improvement with antibiotics. Did 4 courses of antibiotics for 2 weeks each and no improvements. Finally one of the blood works showed my IGA at a 6 and things started to fall into place. Because it was considered boarderline the dr sent me for an endoscopy. That came back negative as well. So he sent blood for genetic testing... negative as well. So here is where we are, my doctor is fairly certain it is just an intollerance because I do not have the genetic markers, but my sensitivity is extremely severe, any cross contamination and I am sick for 2 days. I used an old spoon and bam... 10 minutes later was in the bathroom with cramps and D. We have also determined the rash in the hospital was most likely not hives but the gluten rash... and since I already have an auto-immune disease he's not 100% sure it's not Celiac, but the diet has made a huge change. I also had gastric bypass 6 years ago, so there are parts of my bowel that the dr's are unable to biopsy but could be affected. Has anyone else had so many signs of Celiac, but all tests say the opposite?
I have been so hyper at night and unable to sleep (been very productive at 2 or 3 in the morning) but on the other hand, I really should be sleeping and it has been going on for a long time. I didn't associate it with my gluten intollerance until I saw all these postings and read everybody else's expierences! I was diagnosed with Grave's disease almost 15 years ago (autoimmune hyperthyroid), then had the thyroid removed a few years later, and now on synthroid. I did check that it was gluten free when I discovered my intollerance. I already do B12 injections, I'll try to up the dose and see if that helps with the insomnia. Thanks for all the advice and knowing I'm not alone at 3am!
SKBird I would highly reccomend you get a medID bracelet, I am currently going to school for EKG and phlebotomy and one of the antiseptics frequently used it betadine. If for any reason you are not conscience and they need to start an IV you don't want them to use the betadine, plus all the other antibiotics that you are also allergic to. Although your reactions until recently have been just hives, if you are having a crisis, that reaction could be hightened and you don't want any added complications. The celiac part of the medID is the least of your concern, but once getting one, might as well add it.
Kaiti, I had a very interesting allergy testing experiences. I had done many years ago the skin prick test and had been told that I was allergic to some airborn stuff (mold, dust, cockroaches, ragweed...), recently when I got sick I saw a new allergist who did a blood test. The weirdest thing... I came back as being allergic to NOTHING! It turns out I have very reactive skin but not actually allergic to anything. I have reactive airways and apparently gluten sensitivity (extremely sensitive!) My skin reacts to almost anything and everything! The new allergist said that for people like me with reactive skin the prick test gives false negatives. So happy to hear you are having the blood tests.
I just ate some Shadybrook farms and am having a gluten reaction as well. Trying to figure out what I ate that could have had gluten in it. Nothing new in my diet today (I am new to the gluten-free diet and being really careful about reading all labels and eating a lot of fruits/veggies and almost everything homemade). Tonight I decided to try and made a turkey meatloaf and bought turkey meat from Shadybrook farms, the label looked safe enough, bought gluten-free bread crumbs. Threw in onions, an egg, and Heinz Ketchup (labeled gluten-free). So if the turkey is gluten-free can't figure why I've ran to the bathroom already in the hour 2 times! This is the first time since changing the diet that I've had a problem. I think that there might be a slight amount of gluten in the turkey even if they say there isn't... if we react to it, there must be!