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1. 50% of adults who have CD are asymptomatic. Children with CD more commonly present with atypical symptoms than classical features (such as diarrhea).
2. DQ2 is present in 31% of Americans. DQ8 (without DQ2) in another 12%. Thus the main CD genes are present in 43% of Americans. DQI (without DQ2 or DQ8) is present in 38%, which yields the fact that at least 81% of America is genetically predisposed to CD or gluten intolerance. (and there are other markers as well).
3. For every person diagnosed with CD there are 4,700 who are not.
4. CD is twice as common as Crohn's, ulcerative colitis, and cystic fibrosis combined.
5. There are 3+ million with CD in the U.S (compared to 1 million with neuromuscular diseases like MS)
6. 39% of CD patients are overweight at diagnosis. A full 30% are obese. (the body is starving to death so it stores carbs)
7. There are over 500 symptoms associated with CD. Most doctors treat these symptoms without recognizing their underlying cause.
8. Blood tests for CD are not standardized among U.S. labs, therefore you have a 50% chance of getting positive test results. Blood tests reflect only total villous atrophy(CD), not Non-CD gluten intolerance. You also have only a 50% chance of having a positive intestinal biopsy. If you are, or have been, on immune suppressing drugs such as Prednisone, you will not test positive.
10. CD has been discovered in 16% of children with type 1 diabetes.
11. Italy has mandatory testing of all children for CD by age 6.
12. You can order a test for CD online for $99 , take the blood test at home, and have the results in the comfort of your own home in 10 minutes! (from Optimum Health Resource Labs) Biocard in Canada offers a home test for $50!
13. Your doctor was probably taught in med school that CD is rare: 1 in 10,000. It's presently 1:100 and increasing. The diagnosis rate is doubling every 2 years. Diagnosis rate up 400% as of 2010.
14. CD is a genetic autoimmune disease. Children and siblings of celiacs should be tested. Although most first degree relatives do not test positive with blood work! (Suzanne's personal recommendation is stool testing with Enterolab, which is 3X more sensitive than blood tests so it will show gluten sensitivity or intolerance before blood work) Rate of non-CD gluten intolerance: 1 in 7 people.
15. There is a tax deduction for GF foods as a medical expense for diagnosed celiacs who qualify. (eg., own their home)
16. Proper semantics: Prior to destruction of intestinal villi, this disease = gluten sensitivity, or intolerance, or latent celiac disease. After destruction of villi and autoimmune disease has developed = celiac disease.
Silent celiac disease = asymptomatic but positive blood test and villous atrophy.
"Gluten syndrome" is a term now being used by some doctors investigating the complexities of this disease.
Non-CD gluten intolerance is much more prevalent than CD but symptoms may be just as severe as with CD.
17. To avoid developing food allergies after diagnosis, eat a VARIETY of GF foods!
18. In one African country where we have shipped wheat to help people avoid starvation, celiac disease has developed at the rate of 1:18!
19. It's possible to have negative blood work AND a negative biopsy and still have celiac disease. Negative blood work and positive biopsy is also possible.
20. Don't stop eating gluten before you are tested! If you stop for as little as 1-2 weeks you may not test positive. A slice of wheat bread a day is a good amount to keep eating until you are tested.