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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I am writing for a friend of my daughter. 34 year old male - who somewhat suddenly developed chronic abdominal pain about 6 months ago.
The symptoms progressed to include chronic fatigue. While he had insurance he had CT, Colonoscopy and Endoscopy - routine labs -
nothing found - he had a celiac test - but not sure he followed the diet correctly before the test and there is also a type of Celaic that does
not test positive. In short this person has been able to work during the last 6 months and has since lost his insurance and has been denied for medicaid.
I got a list of his symptoms - and am hoping I can get some feed back from people with this disease to if his symptoms match up to this disease. Any input will
be greatly appreciated ! >>> thanks Rob.
Can only eat a few foods and once used to them cannot switch diet with out pain.
When stomach pain is bad it is always associated with bad back pain and leg pain.
Extreme weakness/feeling faint if goes too long without food
Very easily fatigued after any physical activity
Core muscles weakness
Lacy (spotty) apperence on skin seemingly associated with any physical activity
No ability to regulate temperature.. Overheats very easy... Over heating seems to lead to extreme weakness/feeling faint/fatigue/malaise type feeling
Thanks everyone for the advice and info! I've never really considered joining a support group before but its pretty cool to get intouch with people who understand what you're experiencing. For years everyone would just tell me I was a hypochondriac but after I learned that I might have this disease and researching it these are all the symptoms I've been having! I finally don't feel crazy anymore!
I decided to go Gluten Free out of support for my daughter and because I do struggle with digestive issues and my energy level isn't consistent. I expected that I would feel better but I didn't truthfully expect a BIG difference. In the month that I have been gluten-free I have twice consumed ONE bite of Gluten foods (a pastry once and then a bite of a mini muffin) because I had a brain fart and wasn't thinking. Both times within 8-10 hours the stabbing stomach pains returned and irritability etc even though mentally I never gave either bite another thought. I thought the first time may have just been a coincidence but I realize now the connection. I have also had painful carpal tunnel for years. Two days ago someone asked for an update on my daughter and I told her that she is now Gluten Free. She remarked that she has been gluten-free for a few years and that she used to have painful wrists and now it is just gone. I must be an inner cynic because I still assumed that her issues were not true carpal tunnel? LOL The very next day I was grocery shopping with my daughter and when she picked up items she would wince and for the first time ever complained about the shooting pains in her wrists.
I am researching and reading about this so much now and I read about infertility and all these issues connected to gluten intolerance and I am SHOCKED that potentially I have been struggling with Gluten all this time and just really had no idea!
I am going to Mass General in Boston to rule out celiac. I picked it because one of the docs is a lead researcher and it is a 5.5 hour drive. Plus they did a virtual visit with me which was great.
Admittedly, my first actual visit was short and it felt like a long haul for a quick 20 minutes. I spent about $250 on hotel, gas, food and tolls. I stayed right outside of Boston and booked the MGH rate. I am looking at other options if I go again. I was gluten free at the time so there was not a lot to do at the appointment. My insurance also would not pick up $125 of the visit for some reason.
I cannot give you an overall about time, money etc. as I am still waiting to hear if we are doing another endoscopy. I am hoping they rule it in or out as it has been unofficially diagnosed by two local docs and it is starting to get very frustrating for me as others say it is not celiac and I still feel badly. I do really like the nurse who calls me. She is very receptive.
I can keep you posted!
I also looked at Columbia as I live in NY but they did not accept my insurance and Boston is actually just as easy of a drive for me.