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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- Dawn R. replied to Dawn R.'s topic in Related Issues & Disorders3Gluten Ataxia
Thank you for responding. Yes I am. Infact, sometimes I think it's getting worse. How do you deal with it? I do the best I can but it has taken away my independence. -
- jadeceoliacuk replied to jadeceoliacuk's topic in Doctors4How to choose a Naturopath for 6yr old
Thank you Cristiana. I will check them out. -
- knitty kitty replied to Dawn R.'s topic in Related Issues & Disorders3Gluten Ataxia
Hi, @Dawn R., I get gluten ataxia. It's very disconcerting. Are you still experiencing gluten ataxia symptoms eating a gluten free diet? -
- knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease6
Raw Meat Craving
@Jordan Carlson, Sorry to hear you're having a bumpy journey right now. I've been there. I thought I was never going to stop having rashes and dermatitis herpetiformis breakouts and hives, oh, my! I went on a low histamine Autoimmune Protocol Diet (AIP diet). It gave my digestive system time to heal. After I felt better, I could add things back... -
- Jordan Carlson replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease6Raw Meat Craving
Hey there @knitty kitty! Thanks for checking in. Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take...
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Thank you for responding. Yes I am. Infact, sometimes I think it's getting worse. How do you deal with it? I do the best I can but it has taken away my independence.
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By jadeceoliacuk · Posted
Thank you Cristiana. I will check them out. -
By knitty kitty · Posted
Hi, @Dawn R., I get gluten ataxia. It's very disconcerting. Are you still experiencing gluten ataxia symptoms eating a gluten free diet? -
By knitty kitty · Posted
@Jordan Carlson, Sorry to hear you're having a bumpy journey right now. I've been there. I thought I was never going to stop having rashes and dermatitis herpetiformis breakouts and hives, oh, my! I went on a low histamine Autoimmune Protocol Diet (AIP diet). It gave my digestive system time to heal. After I felt better, I could add things back into my diet without reactions. In Celiac Disease, we make lots of histamine as part of the autoimmune response. There's also histamine in certain types of food. Lowering histamine levels will help you feel better. Foods high in histamine are shellfish, crustaceans, fermented foods like pickles and sauerkraut, canned foods, processed meats and smoked meats like bacon and ham, and aged cheeses. Grains and legumes can also be high in histamine, plus they contain hard to digest Lectins, so they go, too. Cutting out corn made a big improvement. Some Celiacs react to corn as though it were gluten. Dairy can be problematic, so it goes. Some Celiacs have lactose intolerance because their damaged villi cannot make Lactase, the enzyme that digests lactose, the carbohydrate in dairy, while some Celiacs react to Casein, the protein in dairy that resembles gluten. Dairy is high in iodine, which makes dermatitis herpetiformis flare up badly. Eggs are high in Iodine, too. I even switched to pink Himalayan salt, instead of iodized salt. Avoid processed gluten free facsimile foods like cookies and breads because they have lots of additives that can cause high histamine, like carrageenan and corn. Yes, it's a lot. Basically veggies and meat and some fruit. But the AIP Paleo diet really does help heal the intestines. My digestive tract felt like it was on vacation! I'd throw meat and veggies in a crock pot and had a vacation from cooking, too. Think easy to digest, simple meals. You would feed a sickly kitten differently than an adult cat, so baby your tummy, too! Take your vitamins! It's difficult to absorb nutrients from our food when everything is so inflamed. Supplementing with essential vitamins helps our absorption while healing. Niacin B3, the kind that flushes (nicotinic acid -not the same as nicotine in cigarettes, don't worry!) REALLY helps with the dermatitis herpetiformis flares. Niacin and Thiamine make digestive enzymes so you can digest fats. Add in healthy Omega Three fats, olive oil, flaxseed oil, avocado oil, coconut oil. Vitamin D helps lower inflammation and regulates the immune system. Thiamine helps mast cells not to release histamine at the slightest provocation. Benfotiamine, a form of Thiamine B1, has been shown to promote intestinal healing. Pyridoxine B6, Riboflavin B2, Vitamin C and Vitamin A help heal the digestive tract as well as the skin. Our outside skin is continuous with our digestive tract. When my outside skin is having breakouts and hives, I know my insides are unhappy, too. Talk to your doctor and nutritionist about supplementing. Blood tests are NOT accurate measurements of B vitamin deficiencies. These tests measure what's in the bloodstream, not what is inside cells where vitamins are used. Supplementing with essential vitamins and minerals made a big difference with me. (My blog has more of my bumpy journey.) Let me know if you have more questions. You can get through this! -
By Jordan Carlson · Posted
Hey there @knitty kitty! Thanks for checking in. Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take every precaution possible to be as gluten free as I possibly can and have simplified my diet as much as I possibly can but still cant get past this point in my recovery. If this is the case, I believe it would be considered non-responsive Celiac Disease or Refractory Celiac Disease. The only time I have ate gluten purposely in the last year was for the 3 weeks leading up to my endoscopy for diagnosis. Aside from that, the last year has been a constant disappointing effort to be gluten free with the same result of getting stuck at this point. I have a appointment with my doctor next week to discuss some treatment options and what the next steps are in trying to get my body to push past this point. I will keep you posted!
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