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- BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis15Dermatitis 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 ... -
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- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis15
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 -
- Russ H replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5New diagnosis
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...- 1
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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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By Scott Adams · Posted
In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:
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