Diagnosed with Celiac Disease and Still Sick

As an Integrative Nutrition and Wellness practitioner, I work with many people who are gluten intolerant (myself included). I direct my clients to the foods that we are so deficient in in our culture; whole foods - especially green leafy vegetables. What I am getting at is that the processed gluten free foods are, yes, expensive, but they are not at all healthy and do not promote healing of the intestines. So, to help direct you to less expensive naturally gluten free food - look to all varieties of green leafy vegetables, ALL other vegetables, fruits, beans, whole non gluten whole grains (rice, millet, quinoa, buckwheat, amaranth...) eggs, dairy (if tolerated), clean animal proteins, nuts & seeds... Make this 90% of your diet & then save the other 10% for the processed gluten free foods.

Hemochromatosis is a foundational problem for so many OTHER problems--if it's diagnosed positively, you need to know that there are multi-vitamins that contain no iron. (look for "men's health", and "mature adult" types.) But with celiac, it's a balancing act, since the absorption problems are so serious. Check B-12, since I've heard that a lack can lead to loose iron in the body--there has to be enough B-12 for the iron to actually be used--otherwise, you get "rust", but not healthy red blood cells. Check with a registered dietitian who has experience with BOTH celiac and hemochromatosis.

Sometimes even the best doctors don't understand quite enough about nutritional problems--they're focused on trying to keep people from dying,(or at least getting any worse) they're overworked, and if you have only ONE foot in the grave, they really have to move on to the next sick patient. I use my dietitian and pharmacist quite a lot, since they're front-line on foods and medicines, and the really good ones will think of your problem as a mystery to be solved. Not that they're not busy, but celiac issues don't necessarily follow over to the next patient for a doctor--but to a dietician and a pharmacist, what they learn from you might help the very next guy in line.

The next thing you need to convince yourself is that CELIAC FOOD DOESN'T HAVE TO BE BORING!! Vigilance is necessary, but there's a whole world of flavors that don't have gluten. Once you get on the road to healing, there's a massive variety of really yummy, interesting, healthy (and just yummy-but-really

UNhealthy) stuff to eat.

Today is my weekly cookfest for my sprue crew--a big pan of shepherd's pie topped with roast garlic mashed potatoes, a tortilla pie with cheese on top, and a pork loin roast with baby carrots and wilted spinach on the side. Not a gluten molecule within yards of it. Dessert is flan with nutmeg, jewel-krispie treats (get the multi-colored ones with no malt--they come in a big bag in our area), and ginger pears in chocolate sauce. Bananas Foster Cream Pie for Sunday dinner. (Corn Chex, butter and 1 TBSP brown sugar all crushed up for the pie shell) Chocolate-covered cornflakes with almond slivers. WAY more veggies than meat, more green than sweet. But use flavor and variety so that you don't get bored.

Oh, and my only "chef" experience is that I worked for McD in college, and like to watch the food network. Took a bread class from a master bread maker for a month, years ago. That's it.

You can do this. Probably better than most, because your health depends on the level of your dedication.!

Thanks for much for this comment! I'm finding that real, whole foods are really helping me heal and taste great - much better that the processed gluten-free foods I've tried.

Gluten will only affect you if you digest it, so unless you're eating the shampoo you should be fine. It's only if you are allergic to wheat/gluten that you would have a reaction outside of ingesting it.

Celiac disease is NOT an allergy

You need to get serum vitamin B12 level checked. I had to take vitamin injections (7daily, now weekly). After couple of days I felt very energetic & my bowel seemed less volatile. I had B12 rich diet (dairy, fish meat) before but still had low B12 due to absorption issues.

Order the Gluten-Free Shopping guide book by Cecelia's Market Place. I have had 2 blood tests in the last year and no gluten in my diet while eating many of the products listed in the book that are not labeled gluten free. I do buy some gluten free products from Bob's Red Mill and I bought a bread machine and make my own bread form his mix and it is so much cheaper.

This is not true for everyone. Gluten can be absorbed into the skin and still affects those with celiac.

I have had this exact problem. I was diagnosed when I was 13 and after being off of gluten for bout 6-8 months, I was good. Then I started to get very sick and nauseous with nothing staying down. I lost quite a bit of weight. Headaches, cramps, bloating, nauseous, sick all the time. But after 3 months of pain, it got worse. It was so bad that I was screaming in agony. I had such severe adominal pain the doctor took blood tests to see if I had gluten in my system - nope. Also, I got an ultrasound but it came back negative. I am still hurting - not as severe. I am being more strict with milk and beef and seasoning. Also, I have found that if you have more than one banana a day you get cramps.

Actually, if you have a gluten allergy, not celiac, you could have outside symptoms like a rash or throat swelling. Plus, if you have celiac disease, you can get head rashes or mouth sores from tooth paste or wheezing. The list goes on.

Not always - your villi in your digestive tract can have issues with fructose and lactose if they are super sensitive. I was tested for fructose but thank goodness, nada. So what I mean is, if you have celiac disease, you could be sensitive to fruit and milk.