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
We all have to make our own health decisions based on our individual circumstances. There is not any “one size fits all” approach. ☹️In your daughter’s case, she was asymptomatic. I also would find it hard to believe that she had celiac disease despite confirmed biopsies and antibodies tests. I get the denial. I just had anemia that was disguised by a genetic anemia. I was shocked at the suggestion of celiac disease. My hubby had been gluten free for 12 and I knew exactly what the treatment meant — gluten free for life. A total game changer.
Because we have bought our health insurance for over 20 years, we have lived through the times that I was uninsurable due to my Hashimoto’s, Rosacea and toe nail fungus (yes, that is right). I never went without, but I could not freely jump from plan to plan. My premiums were higher than my hubby’s. So, we worry that health insurance could change and I would be uninsurable again. (Did I mention that our annual premium is $24,000?)
However, the genetic test can be invaluable but is mostly used to help rule out celiac disease. There are other genes associated, but they have not been studied well.
“So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.” (Sheila Crowe, now head of the American GI Association).
The antibodies test, in conjunction with the biopsies is the best means of diagnosing celiac disease to date. The blood test is the least reliable as there are false positives (rare). It is hard to dispute villi damage. Too bad your Aunt did not get a biopsy, but understandably, an endoscopy can be costly if you lack insurance and there are many other reasons, so many are forced to forgo this procedure.
It is unfortunate that we must weight the risks and benefits of everything.
Kirsty, in my experience, being ‘gluten light’ is not helpful. I think it doesn’t make any sense tbh – it does more harm than good.
The withdrawal period is very different from being gluten-free long term. The withdrawal symptoms can be extremely unpleasant but they are temporary! Let’s say 4-6 weeks.
I personally was feeling like a drug addict or an alcoholic in rehab at the time. I was having all kinds of withdrawal issues – one of them was extreme hunger and unusual stomach cramps caused by hunger. I had to eat approx. every 2 hours – otherwise I would get very dizzy and lightheaded. It felt as if my body was finally getting the types of foods it needed (= gluten free) and wanted these ‘right’ foods constantly.
The fact that my body viewed gluten as a drug and was addicted to it was a proof in itself for me that I am gluten intolerant. Let’s say I wouldn’t eat any potatoes for 2 or 3 weeks – nothing would happen. Often the types of food we love the most, crave and can’t live without are the very types of food we are intolerant and addicted to.
If you’re not a diabetic, the hypoglycemia could resolve completely on the gluten-free diet.
My advice would be read about gluten withdrawal and don’t let it discourage you.
I know this thread is eight years old, but I'm bringing it back because ingredients have (very likely) changed since 2009.
Jimmy Dean breakfast bowls still don't list gluten, wheat, etc.
But they did give my mom and I terrible stomachaches. I know the scientific method calls for repeat experiments but we don't really feel like it.
However, I will say we usually stick to a strict gluten-free diet (only eat if it states gluten-free or if there's no way it contains gluten; fruit, veggies, etc) So it's extremely unlikely it was anything else.
These were just a risk we took because there's so few explicitly gluten-free quick meals- we both work long-hour jobs and have school so quick meals are very helpful.
TL;DR: They are very likely NOT gluten-free. Just because it doesn't say gluten/wheat in the ingredients doesn't mean it's not present. Call me paranoid, but I feel it's a good rule.
Victoria. Yes I got tested for Addison’s but passed. The first test I barely passed.
I have had adrenal issues for a while. Adrenal fatigue, but not advanced. I always had a lot of food intolerances. But gluten was fine. Histamine and salicylates where a problem though. Mast cell activation syndrome. In hindsight possibly caused by Lyme and my genetic makeup.
Then I tried psych meds and they put me on valium to counteract startup side effects. I actually had a paradoxical reaction, not side effects. And after waiting that out I could not stop valium at once. I went to a very heavy withdrawal process for a year. That is when my mast cell actvation syndrome gt way worse and I became gluten intolerant. Had hardly any foods left. And because the withdrawal of gluten was so heavy, I could not go through with it fully. I hoped it would just go away after withdrawal was over. But I still have this limited diet and am gluten intolerant 2,5 years afer withdrawal. But the withdrawal process really hurt my adrenals and my nervous system. I can’t even tolerate most supplements. I guess the valium withdrawal and damage it did is also the reason that stopping gluten gives such bad withdrawal.
Read this about the benefits of having a celiac disease diagnosis. It is written for doctors, but it is very useful.