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 was very excited to hear from a friend that peace a pizza now offers gluten free pizza, but was discouraged when she told me that they uses spelt. Spelt is not gluten free and is part of the wheat family. So bummed! I have missed real pizza so much and got really excited.
It seems strange that I didn't start getting this until after I stopped eating gluten. I once did get a patch on my chest, the very first time it happened. The patch on my chest was extremely itchy, but hurt when I scratched it. I had eaten peanuts from trader joes that were labeled gluten free. However, the back of the package said that they were made on shared equipment with wheat. For the most part I usually get one on my hand/wrist and on in the same spot every time on the top of my foot.
Since I have been gluten free (about 8 months) I notice when I Get cc'd I sometimes get an itchy blister. It lasts for a few days, goes down, sometimes goes away, sometimes repeats this cycle. When it finally goes away, it leaves a purple mark. The odd thing is, I only get one or two at a time so it doesn't really seem like a rash, but what is it then?
I have the itching to from time to time, usually on the insides of my arms although I can't relate it to any of my hair or soap products as I have checked the labels and I don't see anything that stands out as a wheat ingredient. Recently my chest and neck have been extremely itchy with a small rash consisting of red bumps. They lasted a few days and then faded. One turned into a scab from scratching so much. For the most part the rash is gone, but still very itchy. Every few days a random red bump will rise and then go away a day or so later. I don't think this is DH, but don't know what it could be from. I had a mild sunburn a couple of weeks ago, but that has long since faded and I've never had this with sunburn before.
My doctor only took 2 and told me that 3 days back on gluten after being gluten free for over a month was plenty of time! Really frustrated and feel like it was all such a huge waste of time and money.
I had a similar situation. Negative blood work, negative biopsy. I had been gluten free for a littlemorethan a month when the GI suggested the tests. He told me to eat gluten for 3 days prior and that should be enough. He only took 2 biopsies when I had my endoscopy. I then had a follow up with a physician assistant who said he couldnt believe my results were negative based on my symptoms. He said to just assume I have celiac. Even he did not seem knowledgable enough about it. So did I get a diagnosis? Not really! It can be frustrating. I went gluten free the day of my endoscopy and never looked back. I was miserable the small amount of time I had to go back to eating gluten for the biopsy.
Thanks everyone for the helpful info. I have pretty bad reactions when I eat even a small amount. Usually get a really itchy rash which lasts for about a day, headache, fatigue, and terrible joint pain (which lasts for several days). All of which I have had before going gluten free, but now much worse. I know I can't eat it, so I don't.
Just wondering how seriously to take the "your results are negative, but assume you have celiac" the doctor said he couldn't believe they came back negative due to the symptoms I have. I guess I was just looking for a yes or no answer and am afraid family and others won't take the "assume that you have it" as a real diagnosis. I'm tired of explaining it already....
I have just recently had blood tests and biopsy, both came back negative. When I went to the doctor today for the biopsy results I actually met with the phsyicians assistant (who didn't do the biopsy, but read me the results). After hearing my symptoms he said he was very surprised the tests came back negative. I told him that I was off of gluten for a month and a half before testing and only went back on for a couple of weeks for the test (the dr said I only needed to eat gluten for 3 days prior to testing). The physicians assistant that I saw today said he wasn't sure if that would skew the results or not, but told me to just assume I have celiac due to my symptoms. Not really a diagnosis and a long story to explain to everyone that inquires. I guess I'm a little frustrated. Any advice ( I have been gluten free since the day is the biopsy, I just can't eat it) I'm just uneasy of the somewhat diagnosis.
Just curious- what type of test did you have done to for gluten? Was it the celiac blood tests or something else? I was just wondering since I went gluten free for a month and the back on for about 3 weeks for the celiac blood tests (and having endoscopy on Friday). I am still a little worried that the month gluten free will negatively affect the outcome of the tests.
I also have these same symptoms. I am in week 3 of a gluten challenge after a month off. I also occasionally experience acid reflux with this. I have tried Tums and pepcid ac which have no affect. I only get relief when I am sleeping.
So glad to see this post as I have the exact same question! I went gluten free for just about a month as well. I wasn't super careful at first of cross contamination, but ended up having bad reactions with even the smallest amount after a week, so was very careful the last three weeks. I went to see a GI who wants to run the blood tests (looks like not the full panel though) and then do the endoscopy as well. I've been reading everyone's posts for a bit and have heard mostly the rule of thumb is 3 months back on gluten. The GI told me I only needed to be on gluten for 3 days! I scheduled the endoscopy and blood tests so that it was a month back on gluten. Anyway, I was hoping that with only doing a month off, a month back on would be enough.
The first few days to a week I had pretty bad reactions to being back on gluten, but they have become less severe and are pretty much back to what they were before going gluten free- mostly extreme fatigue, headaches and constipation. The only thing that is worse is joint pain, my knees are really bothering me and I have nausea after eating.
Lately, I have been experiencing this mostly on my stomach which is different especially as I haven't been "sick." No rash, no bumps, no redness at all even though each time I think "there's got to be something there!"
This happens to me as well. It used to only happen when I was sick or getting sick. I never knew how to explain it, my skin just hurt. Now it happens when I am not sick. I thought it was something that was common to everyone. I remember the first time I told my husband "You know how your skin hurts when you are coming down with something?" He looked at me like I had two heads. He had never heard of such a thing.... Glad to hear it's not just me.
Did your daughter ever have tests done? Just wondering if the doctor made the diagnosis on gluten challenge alone. I'm in a similar situation, went gluten free for a month, but now have reactions when I eat it. But in hindsight, should have waited to go gluten free so I could have been tested.