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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Get some celiac travel cards to print off and keep in your wallet. Present them to your waiter.
Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.
As far as the wheat pasta.....some folks say the wheat is different. I personally think they are kidding themselves. There is no scientific proof that I have found to support this theory. (Anyone want to present such data?)
Italy, from what I heard is great for celiacs. I'll know for sure this summer! I'll be there! As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling. I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.
It looks like you have a few options that you need to consider pursuing:
1. Get back to your doctor and tell him to figure out what's wrong with you. Take a friend because it helps to have someone listen and take notes who is not the patient. Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.
2. Ditch this GI and get a new one (SIBO is real per my celiac savvy GI). Take a friend with you.
3. You say you are lactose intolerant. Experiment by going lactose free for six months -- not just a few days. This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten.
4. Recognize that some celiacs test NEGATIVE to antibodies. Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months. Normal vitamin and mineral levels do not rule out celiac disease.
5. Recognize that you can multiple reasons for villi damage. That's why a second consult with a celiac savvy GI is important.
Try keeping a food and symptom diary. She could have allergies or intolerances. But, again, I am not a doctor! I am healed from celiac disease, but I still react to certain foods and have allergies. Those will probably never go away as I have been plagued with them all my life (as my siblings have too). She could have a milk protein intolerance and not just lactose. Eliminate all dairy too see if it helps.
Speech really normalizes by the age of 8. I can not say if your public school will evaluate her. My home-schooled friends are still monitored by the state and receive state funding. So, I would assume they would receive all the same benefits. Try calling.
Let me tell you that based on what people post on this forum, it takes MUCH longer to heal. In theory, it should just take a few week on a gluten diet to promote villi healing. Your body is constantly regenerating new cells in your gut on a daily basis. Why the delay? First, it takes a long time to really master the gluten free diet. So, in the beginning, dietary mistakes are often made which can delay the healing time. Second, celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system. Antibodies can take weeks, months or years to come down. Third, there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels). Usually anything neuro takes much longer to heal.
Has your doctor checked you for nutritional deficiencies? If not, ask. You might be really low on a vitamin or mineral. You could be low on digestive enzymes (actually they can not be released in a damaged gut). So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients. You could help the healing process by taking gluten free supplements and enzymes. But it is best to see what you are actually deficient in. Most of these deficiencies resolve with time.
Finally, my parting words of wisdom (as passed on by many of our members), is patience. I know. Hard to be patient when you want to feel well, but it will happen.
Hang in there!
Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life. After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck. Imagine!
Glad you feel better and yes, it was the wheat!
Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
Here is the link if you have never watched it.
Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!