-
You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
The Funny Pages - Tickle Me Elbow - The Original
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis18Dermatitis 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 Herpetiformis18Dermatitis 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...- 1
-
-
- knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis18
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... -
- BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis18Dermatitis 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
-
-
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Celiac.com Sponsor (A22):
-
Forum Statistics
-
Total Topics121.7k
-
Total Posts1m
-
-
Celiac.com Sponsor (A21):
-
Who's Online (See full list)
-
Upcoming Events
-
0June 04, 2026 11:00 PM
Until
June 05, 2026 12:00 AM
-
0June 09, 2026 10:30 PM
Until 11:30 PM
-
Posts
-
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
-
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!
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.