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. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Oh... "my first post" . Let me explain - I'm a teacher, not a marketing person. I am angry that I was misdiagnosed. I am angry that so many doctors try to make people with gluten problems feel inferior or crazy. I was worried that a woman who was pregnant was possibly hurting herself and her baby.
I tend to avoid posting things because I dont have much time and because I try to avoid the computer as much as possible. However, when I saw a note from a pregnant woman having difficulties I felt obligated to post. I am thrilled that because my sister listened to what I said, my nephew doesn't have to live the first 28 years of his life how I had to.
I also see many children every day who eat nothing but crap and it drives me crazy that no one is helping them. Have you looked in a school cafeteria lately? There is essentially nothing I'm allowed to eat there except iceberg lettuce, which really has no vitamins and therefore nothing to offer except fiber. Think about it, in many schools over 90percent of the kids get free lunch meaning they eat what is served. A significant portion of those kids likely have allergies - but are given no choice other than lunch room slop. As a teacher who can afford to bring her own lunch, I do - but I cringe watching students line up for plates of what is poison to many of them.
I don't post because I try not to get sucked into the computer. I posted that time because I felt obligated to help a woman protect her baby and herself. I volunteered as a prenatal educator and am rather passionate about the role nutrition has in developing babies and children.
I can speak from my experience - which, is that it told me nothing. I was positive diagnosed via Entero Lab after being given a clean bill of health from the endoscopy. I later learned that dr.s that perform endoscopy tend to diagnose only full blown disease; hence, if you have gotten to the point of drastically damaging your intestines they can see it. If you are ill, but not 1/2 dead they cant.
Hi. I'm hoping that this might help someone who is trying to get better.
My journey included many misdiagnoses, one un-needed surgery for incontinence, therapy because I was so (to put it simply) messed up, and a lot of self-doubt when dealing with the wrong doctor. Here are the highlights of frustration:
1. I had a negative blood test.
2. I had a negative biopsy.
3. When I had vitamin panels done of my blood, the levels of vitamins in my blood were low. (If your doctor is difficult, and you can't get a new one, try forcing them to do a vitamin panel of your blood and then force them to explain to you why you don't have appropriate levels. )
4. I went to an allergist asking for hundreds of dollars in skin tests. He said he'd make a lot of money off of me if he did them, but it wouldn't be a definitive test. He (Dr. Howland in Austin, Texas who is celiac himself) said to get the $99.00 stool test from Enterolabs. I chose to order that and the genetic one from Entero Labs, but he had said the $99.00 would have been satisfactory.
* Doctors don't as a rule seem to be well-educated in nutrition and chemistry or preventative care. They also don't seem to do many stool tests. My friend is a vet, who of course does stool tests. Her first degree was also in chemistry. She looked at the test and said it made perfect sense to her. Looking in the blood for a reaction makes no sense because it is in the stomach and intestines where food reactions occur. This coincided with what Dr. Howland said about why skin and blood tests aren't necessarily conclusive. He said blood and skin tests are such a gray area that the serve more to confuse than actually help. I trust the man because he refused to take my money for an expensive skin test. And, I highly doubt he gets any "kick-back" for the $99.00 test he suggested I get from Enterolabs. And, well, he is celiac himself so he understands.
5. I found out that I am positive for gluten sensitivity and that I have TWO genes for celiac. This means my mother has at least one and my father has at least one. This make sense because my mother has a sister with mental illness of the schizophrenic variety and my cousin (Dad's side) is diagnosed schizophrenic. My mother is a nurse, her ill sister is a pharmacist, they have a brother who is a doctor. They are all wonderful people, but REFUSE to consider that there is an ailment that can be solved from food rather than prescription. But that is another story...
6. My sister and I shared a room growing up, so she saw the "real" me who was struggling with various issues all my life rather than the "public" part of me that drank cans of mountain dew to self-medicate. When her son was having problems similar to me pre-diagnosis, she was wonderful enough to get him tested with Enterolabs as well. With a gluten free /dairy free diet he is so much improved.
7. She also, at the recommendation of a great doctor, has used a vitamin from Thorne Pharmacueticals called Nutri-ADD. http://www.thorne.com/home.wss
- Interestingly, the ingredients of it seem to make sense based on an enzyme activity article I recently found. Admittedly, I don't understand it all - but I'm going back to school for medicine now. Hopefully with a few more chemistry classes under my belt I'll comprehend more of it. In the mean time, it is simply interesting.
Good luck to everyone who is struggling with this. Hopefully I'll get a new degree, do some research and isolate the enzyme we need!