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 had exactly the same thing ... no one diagnosed it properly. They completely disappeared once I was gluten free/wheat free. For myself - they seem directly related to wheat .. if I eat wheat they come back; as long as I avoid wheat they are no where to be found. Sounds like DH to me too. Best of luck ...
Really seems like you're reacting to gluten; especially since you indicate you were doing so well when you initially removed it. I agree with you that you should probably return to gluten free.
Often times with autoimmune, medical community seems to be at the mercy of how the disease presents itself. As a medical professional myself, I'm not disparaging the profession at all. It just simply seems that every person's symptoms vary greatly, so it's difficult to coral autoimmune into a defined "box". Coupled with hormonal fluctuations (ie- having a baby) - autoimmune can be volatile.
Personally, I spent years +++++ trying to figure out what was "wrong" with me. Took my own research & elimination diet. Identified gluten as a trigger but mostly wheat allergy. I am much more reactive to wheat (especially gmo wheat) than anything else; (ie - sinus migraine, congestion, headaches, skin lesions, inflammation, bloating - you name it:) ALL gone when I don't eat wheat/gluten. Removing wheat also helped my thyroid medicine be better absorbed & used by the body. No doctor (or even a few nutritionists) ever suggested a gluten free diet for thyroid. I pursued it myself after all my "researching"
On a side note, my Dad has an intestinal issue that was mostly asymptomatic for 60 + years; a few years ago had to have piece of intestine removed when it was found to be lesioned & destroyed. Doctors were shocked. Doctors place him in the "crohn's" category - though he's still asymptomatic but must be on meds/steroids etc. to keep intestine from inflammation and multiple lesions. He responds to gluten/wheat free but has a hard time maintaining it:) Additionally, my sister, was just diagnosed with Behcet's disease (doctor says it's like a "sister" disease to crohn's) - she had a baby ten months ago & the symptoms started after giving birth (those hormones!). Her lesions were oral, facial & swollen tongue. She is following wheat free/gluten free now and has been successful in no further outbreaks. She is too young for constant steroids and no meds are compatible really with childbearing so she is going the diet route (doctor thinks best route given her age, symptoms & my success with it). So the genetic component is important for you to note (obviously we both inherited genes from my Dad & the allergy/intolerance manifested differently in all three of us, but is definitely wheat related).
Not all issues are diagnosable by specific tests; it is important to note your responses to foods and know yourself. If you are able to follow the gluten free and feel "better", you should give it a try again. Best of luck to you ...
Hi, it may be you are reacting to the wheat - more so as an allergy, rather than just to the gluten. I found after doing an elimination diet to determine exactly what I was reacting to, that it was a reaction to wheat. I did not have reactions or skin lesions/red spots with any other grain - only with wheat. I have removed wheat completely from my diet. I follow very "clean eating" now. I thought I was eating "healthy" all along - I was always very careful - but I was unaware of my wheat/gluten allergies/intolerance. Occasionally I have had a slice of pizza etc. - but pay the price. I found that since removing wheat from my diet, all my symptoms have been erased; but I am also that much more sensitive to the wheat when I do consume it (as my tolerance is no longer built up to it). And also notable, I react differently to different wheat. My research has shown those with wheat allergies are more reactive to GMO (genetically modified) wheat vs. organic wheat. And i believe I read that re: GMO wheat - there are something like 25,000 different forms of it. I react to both, but much more severely when the wheat is not organic. And the reaction comes from consuming merely a piece of cake, a cookie, a piece of pizza. So you may need to determine if it is not just the gluten you're intolerant to, but possibly maintain an additional wheat allergy. (when I did the testing I was extremely thorough - I did not react to barley or rye at all to the degree that i did with wheat ... wheat even induces "allergy" symptoms such as sinus headache, stuffy nose, watery eyes, itchy lesions - since eliminating wheat I no longer require Claritin or antihistamines; all these years I thought I suffered from seasonal allergies to the outdoors!) Best of luck to you ; try to identify the culprit & you'll banish the skin lesions ... mine are completely gone.