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 can definately identify with this. I half-laughingly refer to myself as an 'elder orphan'. I can't afford anything like a secret santa but would love the opportunity to exchange holiday cards with others here. It is comforting in a way to realize that I am not the only person who is isolated but kind of sad to know that there are others in the same boat. When I talk to folks with large close extened families who endlessly complain about them I just want to slap them sometimes.
Yes IELs can be linked to other things.
However, increase in IELs, loose stools, and a good response to a gluten free diet would point to celiac.
Celiac panels vary lab to lab and not all labs run all of the tests so you might want to post here after you get your results. My brother was negative to the labs run but they failed to run the DGP test in him (which I have tested positive on before). He is a biopsy confirmed celiac.
Thyroid issues can give you the runs, and lipase can indicate how well your pancreatic and gallbladder system is working, both can also cause tummy issues. Both issues are also common in celiacs as mentioned by others. Sounds like you have a great doc.
Last, my initial last biopsy was read by a hospital pathologist to be increase in IEL. The slides were read by a celiac specialist at that same hospital after they were re-cut (don't ask, I have no idea) and read Marsh 2-3A damage with areas of normal villi.
Hi Benjamin and welcome
You've found a good site. Everyone above has given you good advice I just wanted to reinforce this point from Ravenwoodglass:
Some people (like me), test negative for celiac but still have a problem with gluten. This is called Non Celiac Gluten Sensitivity and is not a well known or understood condition. Suffice to say if you do test negative, you shouldn't assume that gluten is fine for you, it may well not be.
Best of luck!
I don't think any doctor should be too reluctant to request a blood test if you set things out for them in the right way. You have symptoms consistent with celiac/gluten sensitivity, you have anecdotal evidence (your positive reaction to going gluten free). So you have a good case.
If and when you get some tests scheduled you will have to go back on gluten. This can be rough. It helped me to come on here and document how I was feeling. Support from here helped me get through the challenge period. So do come back on if your doing the challenge.
I agree that you should keep eating gluten and get tested if you can. The reason for the increase in symptoms after being gluten free is the antibodies flaring in response to you injesting what your body doesn't want you to consuming. Your body is letting you know in no uncertain terms that gluten is not something it wants. You don't have to consume a lot of gluten for testing. A couple slices of bread worth is enough. There is a chance with most of your issues sounding like they are neuro related for a false negative. After testing you should IMHO go back to being strictly gluten free no matter what the results. Keep in mind that many doctors consider celiac to be a solely GI problem and won't test if you don't have gastro issues. Sounds like your body is giving you the answer but a formal diagnosis can be helpful with family members and freinds taking the condition as seriously as you need to take it.