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
Where can I buy gluten-free stuff?
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Hi Jennifer and welcome
CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion.
I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate.
I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to?
If you aren't satisfied with your doctors responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course!
best of luck!
There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body. I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means.
These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.
I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.
>.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers. Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive. I just wish others had helped me out earlier with this disease.
PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
Hello Anonymous, and if nobody has said as much yet, welcome
Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.
If you've not already seen it there's advice and further info here:
It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there Maybe start a thread of your own if you'd like some input from others?
Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
Hello again Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.
What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.
You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.
If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms.
Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: