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.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can 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-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is 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 Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.
I am so sorry that you are sick. I think you have to decide if you want to get back on a gluten free diet and get tested or remain gluten free and seriously eat as if you had celiac disease or NCGI. That means following celiac cross contamination protocol. Like not sharing toasters (unless you use toaster bags), condiments (unless squeeze bottles), etc. NO dining out until you are seeing significant improvement. Each time you dine out it is like playing Russian Roulette. Go when you have mastered the diet and can afford to take a hit.
Here is the deal. Celiacs all react differently. If they get "glutened" it can generate symptoms swiftly or it can take a while for those antibodies to ramp up and you will not feel the effects for a day or so. It can take weeks, months or years for antibodies to stop attacking your body. A few gluten exposures, antibodies ramp up, you feel awful, start to recover and then you take another hit from gluten. It can be a vicious cycle. Many celiacs take a long time to recover, but the learning curve to the diet is steep. I think you realize that now. I won't get into developing other concurrent AI issues after repeated glutenings.
Your doctor does not sound celiac-savvy. Not that all GIs need to be experts, but they should keep up on research and follow protocol as recommended by the GI Association. Consider a new GI.
Can you do this diet without a diagnosis? Yes. While I was formally diagnosed four years ago, my hubby went gluten free 16 years ago per the poor advice of two medical doctors. He refuses to do a challenge now because we know that gluten makes him sick. So, he is just as careful as I am.
Consider getting another family member tested who may have celiac symptoms. This is a genetic related disease.
The pill camera can catch celiac disease, but not always because villi are microscopic. I imagine it mostly catches severe damage that affects the actual structure of the small intestine. At least you might have ruled out Crohn's. The GI might have missed areas if damaged. The small intestine is a very long tube and if stretched out larger than a tennis court! Get all copies of your test results from your doctor. You need to keep advocating and having those records in your possession is priceless.
I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat gluten and I never have problems.
No, my kitchen is NOT Celiac safe/friendly. Although I do maintain a gluten free diet and use only gluten free products in my cooking/backing, there is high risk for cross contamination with toaster use, other appliances, butters, sauces, etc. Same goes for the rarer occasion that I'll dine out - I eat gluten free & only from a gluten free menu, but I don't only eat at places with Celiac friendly kitchens/prep space.
From what I can remember, I'd like to say I have been woken up with issues just a few times though, and not anything significant. I won't dispute the probability I have IBS, however, I think there is more going on, too.
Thank you for your kind words & well wishes.
I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child beingÂ 'relatively healthy'Â the non-gluten intolerant spouse suggests that the child be able toÂ 'live a little'Â and enjoy the cake and pizza that is so prevalent during children's parties and sporting events.
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I am so sorry you have been suffering so much for so long. Yes you do need to eating gluten for celiac related testing. There is a lot we have to do to be safe. While gluten free have you been using things like a seperate toaster, dedicated condiments, butters,jams etc? have you been baking with wheat flour for others? What is your diet typically like? I ask because your doctor is woefully ignorant of the diagnosis process for celiac so he may also not have told you what you need to do to be safe. The Newbie 101 thread at the top of the Coping section has a lot of info.
I hope you get some answers soon.
One more thing. Are you being woken up at night with D? That is a good sign that you don't have IBS. IBS D hits when folks are awake.