I decided to write this to gel together what I have learned in the last 8 months, since being diagnosed with Celiac. My hope in doing this is to provide some help to newbies in getting through the process. There is SO much to learn. My thinking is that if I can help one person feel better quicker, then it was worth it. The following is my top ten words of wisdom
1. Doctors do not understand Celiac, for the most part. Save yourself trips from doctor to doctor to doctor. Blood tests can be inconclusive. Biopsies can be inconclusive. False negatives are common. Celiac may be found on blood tests or biopsies, but it might not. Gluten intolerance and latent Celiac will not show up on a blood test.
2. The definitive test, IMHO, is positive dietary response. If you suspect you have an intolerance to gluten or Celiac disease, do a gluten free trial. You will see positive results if this is indeed your challenge.
3. Once you go gluten free, you probably will develop secondary food intolerances that make you feel really bad, and make you wonder if maybe gluten is not the problem. Many of us experience secondary intolerance AFTER going gluten free. Common culprits are: dairy, soy, nightshades, corn, grains, nuts. The only way to really figure it out, without thousands of dollars in tests, is keeping a food journal. Write down every single thing you eat, and make notes of any reactions. Reactions can happen several days later, so it is tricky to figure out. Dairy seems to be an issue for everyone starting out, because it is processed by the villi in the intestine that are damaged from Celiac. When you start to re-introduce foods, do it one at a time so that it becomes obvious which ones are still giving you problems, and add new foods no earlier than every 3 days.
4. Reason number 3 is my reason for suggesting a very simple diet for a period of time when first going gluten free. The intestines need time to heal, and many foods make that more difficult. Resist the urge to buy gluten free replacement foods, like gluten free bread, cookies, cakes, etc. Stick with single ingredient, whole, unprocessed foods.
5. Vitamin and mineral deficiencies are common. Try to get tests for these deficiencies with your doctor. Be forewarned that most doctors try to convince you that it is not necessary. Supplements that are useful for most Celiacs are a good multivitamin, fish oil, calcium plus Vitamin D, and probiotics and enzymes. Probiotics will help replenish the