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- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis16Dermatitis Herpetiformis - follow up dermatology appointment coming up
@BelleDeJour, The genetics are fascinating. I'm very curious about what your genetic test would show. My dad was a smoker, too. Tobacco acts as an antihistamine. Histamine levels increase in the immune response to gluten. My mother had headaches, gastro symptoms, and thyroid problems. She developed nodules and had to have her thyroid removed... -
- BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis16Dermatitis Herpetiformis - follow up dermatology appointment coming up
@knitty kitty thank you so much for that wealth of information which I shall take time to digest (because it's gluten free 😀). I will make notes in preparation of my Derm appointment next week. The genetic link is interesting. My parents both died 20 years ago, in their mid-60's. Both were always very active, healthy diet etc. but my father was a ...- 1
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- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis16
Dermatitis Herpetiformis - follow up dermatology appointment coming up
@BelleDeJour, Have you thought about keeping a food mood poo'd journal? Recording what and when you eat can help pinpoint possible culprits for your outbreaks. A red dye additive used in some foods and drinks contains iodine. Have you considered getting a genetic test to look for Celiac genes? Having Celiac genes and a positive response to...- 1
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- coeliacmamma replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5New diagnosis
Thankyou all for your replies this has helped massively
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By knitty kitty · Posted
@BelleDeJour, The genetics are fascinating. I'm very curious about what your genetic test would show. My dad was a smoker, too. Tobacco acts as an antihistamine. Histamine levels increase in the immune response to gluten. My mother had headaches, gastro symptoms, and thyroid problems. She developed nodules and had to have her thyroid removed. This is common in thirty percent of patients with Hashimoto's thyroiditis. I've got two Celiac genes, so they both must have had Celiac. The thyroid and the pancreas use a great deal of thiamine, as do the brain and heart. Thiamine deficiency can be localized in one organ. Thiamine deficiency localized in the digestive system, Gastrointestinal Beriberi, has the same symptoms as Celiac Disease, abdominal pain, acid reflux, bloating, sibo, gastroparesis, diarrhea and constipation. Thiamine deficiency localized in the pancreas reduces insulin production and results in diabetes. In the thyroid, Hashimoto's is related to thiamine deficiency. Headaches and migraines can be a result of thiamine deficiency. My mother at 67 developed Glioblastoma Multiforme, brain cancer. My dad had a Triple A (Abdominal Aortic Aneurysm) which is also linked to thiamine deficiency. It was caught in time, but he later died of pneumonia after chemo for lung cancer at 81. Thiamine deficiency is commonly found in all types of cancer. I'm so glad you're going to look into Benfotiamine. Do take all the rest of the B vitamins as well as Benfotiamine. They all work together, but Thiamine also does a whole bunch of wonderful stuff by itself, so taking more than just the recommended daily allowance is beneficial. Our metabolic need for thiamine increases when we're sick, emotionally stressed, or exercise regularly. Thiamine in all its forms is safe and nontoxic. There's no upper limit. I've been taking high dose thiamine for over a decade. Do get checked for other nutritional deficiencies like Vitamins D, A, and C, all very important in skin health, as well as magnesium (works with thiamine) and iron. I love your comment about "digesting the wealth of information" and it being gluten free! There's no wealth like knowledge, no poverty like ignorance. So thankful I can share the wealth! Do keep us posted on your progress! -
By BelleDeJour · Posted
@knitty kitty thank you so much for that wealth of information which I shall take time to digest (because it's gluten free 😀). I will make notes in preparation of my Derm appointment next week. The genetic link is interesting. My parents both died 20 years ago, in their mid-60's. Both were always very active, healthy diet etc. but my father was a smoker (always smoked outside, even when we were children). My mother died from pancreatic cancer at 64 and always had problematic gastro symptoms from childhood - and regular migraines, used to complain of bloating. I had a 'lightbulb' moment a few weeks ago and I do really feel she may have been Celiac. The iodine used in dyes is interesting, it could have been that in the sweets - they were RED! 🫢 I had read about B vitamins being good for dermatitis herpetiformis before and am taking them (I think it's just a B vitamin combination I have currently). I will look into getting Benfotiamine. -
By knitty kitty · Posted
@BelleDeJour, Have you thought about keeping a food mood poo'd journal? Recording what and when you eat can help pinpoint possible culprits for your outbreaks. A red dye additive used in some foods and drinks contains iodine. Have you considered getting a genetic test to look for Celiac genes? Having Celiac genes and a positive response to a gluten free diet can be used as part of a diagnosis of Celiac Disease without undergoing a gluten challenge. Do get checked for Diabetes. Activated Neutrophils are involved in making dermatitis herpetiformis blisters and they are also found in Diabetes. Apparently, high glucose levels contribute to activating Neutrophils. People with dermatitis herpetiformis have a 22% increased risk of developing Diabetes. One study found a majority of people with dermatitis herpetiformis have four or more autoimmune diseases (Addison's, dermatitis herpetiformis, Diabetes, and thyroiditis being the most common). I have dermatitis herpetiformis and I developed Type Two Diabetes. Ninety-eight percent of diabetics are deficient in Thiamine. I changed my diet to the AutoImmune Protocol Diet and took Benfotiamine, a form of thiamine, that has been shown to increase insulin sensitivity. I no longer have any symptoms of diabetes. Because half of Celiacs carry the MTHFR mutation, I supplement with methylated B vitamins. Many of the B vitamins, including thiamine in the form Benfotiamine, improve the neuropathy that goes along with dermatitis herpetiformis (that itchiness without a blemish). I take additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide). Benfotiamine promotes intestinal health. Thiamine TTFD improves Gluten Ataxia, brain fog, and fatigue. I use J. Crow's Lugol's iodine because I have had hypothyroidism. It's rapidly absorbed through the skin, so it doesn't trigger the immune system in the digestive system. Thiamine deficiency is also found in Hashimoto's thyroiditis. And... Thiamine has been shown to calm down Neutrophils. Calmed down Neutrophils don't make dermatitis herpetiformis blisters. My skin has improved so much! Hope this helps! -
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There are some really good recipes here: Gluten Free Alchemist The woman that runs it is UK based, and has a daughter with coeliac disease. I think she might be a food scientist as she is extremely knowledgeable about the properties of different starches and flours etc. Coeliac UK have a lot of UK relevant information regarding coeliac disease, and also have a recipes section: Coeliac UK Find Me Gluten Free is a good resource to find gluten free places to eat out. You can use the website or download their app. Paying for the premium services gives more advanced searches: https://www.findmeglutenfree.com/
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