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- knitty kitty replied to Charlie1946's topic in Related Issues & Disorders6Severe severe mouth pain
Oh, my dear! Get off that Fairlife chocolate protein shake! That's got milk in it! Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance. Damaged villi are incapable of producing lactAse, the enzyme... -
- trents replied to Charlie1946's topic in Related Issues & Disorders6Severe severe mouth pain
@Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not... -
- knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease40
My journey is it gluten or fiber?
The Benfotiamine and thiamax need magnesium to make life sustaining enzymes. Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible. Yes, take the magnesium at breakfast, too. I take my Benfotiamine and TTFD Thiamax and B Complex at the beginning of breakfast. I take the magnesium after I finish... -
- Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders6Severe severe mouth pain
@knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade. Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice... -
- Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders6
Severe severe mouth pain
Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think, I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when...
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By knitty kitty · Posted
Oh, my dear! Get off that Fairlife chocolate protein shake! That's got milk in it! Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy. If the villi grow back, they can resume making lactase again. I react to casein and lactose both. I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety. So dairy is a really scary horror movie. I take Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide). These have anti-viral properties. I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now. I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy. Thiamine TTFD helped clear up the dysphagia I was also experiencing then. I took lots of Lysine to fight the herpes viruses as well. Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part. I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth. I found including Omega Threes, healthy fats, improved my problem. You know how oil floats on top of water? That's going on in our body, too. Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes. Choline and sunflower seed oil supplements are other choices I've tried. Eat real food! Eat fresh vegetables and fruit! I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain. I got a bag of mandarin oranges, Cuties, whatever they're called now. They're not too acidic. Gluten free crackers don't have any nutritional value, no vitamins. I followed the low histamine version of the Autoimmune Protocol Diet. The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful. She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line. Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny. -
@Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general. It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
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By knitty kitty · Posted
The Benfotiamine and thiamax need magnesium to make life sustaining enzymes. Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible. Yes, take the magnesium at breakfast, too. I take my Benfotiamine and TTFD Thiamax and B Complex at the beginning of breakfast. I take the magnesium after I finish eating breakfast. Yes, I take NeuroMag. -
By Charlie1946 · Posted
@knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade. Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing -
By Charlie1946 · Posted
Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think, I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
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