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- suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis20Dermatitis Herpetiformis - follow up dermatology appointment coming up
KnittyKitty, quite agree, more tests should be standard, mandatory even, but they simply are not in the UK. Younger people seem to be tested more older people. Limited funds perhaps, its not right and would be vehemently denied by the-powers-that-be, but there you are. More and more I've found that as I get older I need to do more of the detective... -
- BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis20Dermatitis Herpetiformis - follow up dermatology appointment coming up
Oh wow, I also have vitiligo on my hands and just in the last few days (when I have been brave enough to actually look at my skin now it's a bit better) on my feet a bit. A derm years ago noticed it and said 'stress', I thought probably topical steroid use but what you have written, fits. -
- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis20Dermatitis Herpetiformis - follow up dermatology appointment coming up
@suek54, Testing for nutritional deficiencies is considered part of proper follow up care for those with Celiac Disease and Dermatitis Herpetiformis. The malabsorption of nutrients is common in both. The problem is doctors don't know much about nutrition. Doctors aren't required to take many hours of instruction in nutrition. They are taught... -
- suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis20
Dermatitis Herpetiformis - follow up dermatology appointment coming up
Hi KnittyKitty, Like Belle I have read all your info with great interest and made notes to do a bit of research. It really is a minefield isn't it? Im already on that autoimmune bandwagon you mention - vitiligo, premature ovarian failure (at 39), hypothyroidism, Addison's and now dermatitis herpetiformis. I'm stopping there, any more would just...- 2
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- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis20
Dermatitis 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...- 1
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KnittyKitty, quite agree, more tests should be standard, mandatory even, but they simply are not in the UK. Younger people seem to be tested more older people. Limited funds perhaps, its not right and would be vehemently denied by the-powers-that-be, but there you are. More and more I've found that as I get older I need to do more of the detective work myself. Thankfully, I am able to do that but feel very sorry for those who can't. Anyway, I have already gained so many helpful suggestions on this forum and its just so nice to know that I'm not the only one with this wretched condition. We live to fight another day🤗 Sue
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By BelleDeJour · Posted
Oh wow, I also have vitiligo on my hands and just in the last few days (when I have been brave enough to actually look at my skin now it's a bit better) on my feet a bit. A derm years ago noticed it and said 'stress', I thought probably topical steroid use but what you have written, fits. -
By knitty kitty · Posted
@suek54, Testing for nutritional deficiencies is considered part of proper follow up care for those with Celiac Disease and Dermatitis Herpetiformis. The malabsorption of nutrients is common in both. The problem is doctors don't know much about nutrition. Doctors aren't required to take many hours of instruction in nutrition. They are taught outdated information which doesn't apply to clinical practice. They attend medical schools funded by pharmaceutical companies and taught to prescribe drugs to treat symptoms, not discover the source of the illness. There are many diseases that would benefit from proper nutrition. Arthritis, MS, vitiligo, infertility, and Diabetes are just a few. Do be sure to visit Dr. Lonsdale and Dr. Marrs' site where I learned so much about thiamine... https://hormonesmatter.com/genetic-thiamine-deficiency-ravaged-my-family/ https://hormonesmatter.com/familial-beriberi-discovering-lifelong-genetic-thiamine-deficiency/ https://hormonesmatter.com/thiamine-deficiency-causes-problems/ -
Hi KnittyKitty, Like Belle I have read all your info with great interest and made notes to do a bit of research. It really is a minefield isn't it? Im already on that autoimmune bandwagon you mention - vitiligo, premature ovarian failure (at 39), hypothyroidism, Addison's and now dermatitis herpetiformis. I'm stopping there, any more would just be greedy don't you think!😂 One of my two brothers had rheumatoid arthritis, his daughter has MS, my other brother had pernicious anaemia, all autoimmune. The force seems to be strong in our family. Interestingly, my grandmother had frequent bouts of sickness and diarrhoea all her life, poor love. No-one ever got to the bottom of it. I wonder if she too had coeliacs? dermatitis herpetiformis is horrid but the dapsone 100mg has now cleared my skin. Im still getting some itching and prickling, but nothing to see. Im hoping that will stop in time. My bloods are holding well, no side effects that I'm aware of. You seem to have access to a lot more tests in the USA than we do here in UK. Our NHS is brilliant but only with private health insurance could we get all the tests you mention. Hey ho, perhaps I'll win the lottery then I shall have the whole raft of tests. Thank you so much for all the info. Sue
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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!
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