I have hereditary Celiac Disease. There are many different genes for Celiac Disease, but the gene I have inherited is called Refractory Celiac Disease. Sadly, this means that diet alone doesn’t control my Disease. I inherited the Celiac gene from my grandmother. She was one of the most amazing women I’ve ever known. She was diagnosed in the 70’s, when there weren’t special aisles in grocery stores; she had to special order her gluten free bread; she didn’t have the luxury of FDA rules and regulations we have now protecting us and our bodies. Because of these reasons, along with the type of gene we both share, she ended up suffering from inoperable esophageal cancer, and passed away in June of 1996. I can’t stress enough, the importance of following our diet to reduce reflux, inflammation, and the damage of our autoimmune response (even if you’re suffering from the Refractory gene as I am, it is still of the utmost importance to continue the diet as directed to reduce the damage as much as possible.) Now, how do you know if you have Refractory Celiac Disease vs. the more common Celiac gene? If after 9-12 months of a gluten free diet, with no gluten (0 ppm) intake, your Alkaline Phosphatase levels still haven’t normalized (AP is a liver function test, in which normal levels are 42-98IU for a 20-50yr old woman; however, mine normally sits around 26-30IU at 34 years old.) Another symptom to consider is if your chancre sores haven’t disappeared, even after eliminating Sulfites and Sulfates from your Toothpaste (a common intolerance for Celiacs.) Is your tooth enamel still softening? Do you still suffer from regular headaches/migraines (1-4 per week?) Joint pain? Do you still have rashes on your skin or scalp that won’t go away, even after changing to non-irritant skin and hair care products? If you have COMPLETELY eliminated gluten, no cross-contamination has happened, and no accidents for at least 9-12 months, and still have all or most of these problems plus Vitamin deficiencies and Anemia, you may suffer from Refractory Celiac Disease. Speak with your Rheumatologist, Endocrinologist, or GI specialist (only if GI is a Celiac Specialist.) Many GI physicians do not know enough about Celiac Disease to help with the intolerances that follow, etc. It is always best to find someone who has studied this disease, its complications, and knows its different complications. My old GI in Orlando, bless his soul, was unaware that if you are on a gluten free diet, you’ll get a negative result on your endoscopy. I was gluten free for 5 months when he performed the endoscopy, still ended up with duodenitis, plus all the above symptoms and lab results I listed for Refractory Celiac Disease, and a positive genetics test…2 months later, I had lost 30lbs (from 145 to 115,) couldn’t hold down my food, and thought I was actually dying. It was one of the worst experiences of my life. Thank goodness I had a physician at the hospital who looked over everything, and officially gave me my diagnosis. Moral of this story? Never lose hope!
Now, back to my favorite Celiac… My grandmother always made me delicious, well-balanced meals. One of my favorites, her Stuffed Green Peppers! Did you know even Cooked Green Bell Peppers are packed full of nutrients?
1 Bell Pepper Cooked=
Also, they are packed full of Amino Acids, a very good source of Fiber, and Antioxidants! Sadly, my mother is holding my grandmother’s cookbook hostage in Arizona, so I had to wing-it last night! But from what I remember it was as close to the real thing as possible. So here is yet another tasty recipe of mine (that is good for you too!) Now the protein that I chose is Ground Beef. It is cheap, and very easy to manipulate flavor into; however, feel free to experiment! You can use Lamb, Italian Sausage, Ground Pork, Ground Turkey (though this is a bland protein, so be sure to over season,) and Soy Crumbles/Tofu, etc. Whichever you choose, please comment below to let us know how it turns out? I always like to hear and learn different variations of my recipes. For instance, the Green Tomatoes were created because my husband DESPISES peppers. Hey, at least he’s a Gluten Free, Celiac supporter…we can’t have everything, right? So I decided to stuff the Tomatoes for him in place of the peppers. I tried them, and they were yummy! I’m partial to the peppers myself, though. I think they add more flavor, but to each his own :-). I hope you found this information helpful, and enjoy my recipe. Have a wonderful week!
Ingredients:
My husband and I ran into you and your husband at the doctors office a couple days ago and I wanted to keep in touch. After doing some research on my own and following up with your blog you are truly an inspiration to those suffering. Keep it up! Seriously you shedded light on a possibility of an answer for my husband and I thank you for that.
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Thank you so very much for your kind words. It was such a pleasure speaking with you both! I truly hope you find answers <3. Please keep me posted? Email me at: theglutenfreewife@gmail.com
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