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- Rogol72 replied to Morgan Tiernan's topic in Dermatitis Herpetiformis7How to navigate living with dermatitis herpetiformis
We've got plenty Tiernan's over here across the Irish Sea! I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should...- coeliac
- dermatitis herpetiformis
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- disneyfamilyfive replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Test result insight
Good morning, I thought I’d quickly update this post. A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation. It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit. Met with the GI wh... -
- knitty kitty replied to Matt13's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms31Can food allergies like milk and soy flatten villi?
@Matt13 I understand where you're coming from. Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps. We make histamine in our bodies as a useful neurotransmitter (causing alertness), and also as a response in the immune system. Histamine is made and released by Mast Cells. Mast Cells can... -
- Morgan Tiernan replied to jwall123's topic in Dermatitis Herpetiformis22DH and swollen lymph nodes
A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was a... -
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We've got plenty Tiernan's over here across the Irish Sea! I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should give you some relief. Dapsone is an antibiotic and it does reduce the skin inflammation associated with dermatitis herpetiformis blisters as well as eliminating the itch. I don't think it affects the immune system like oral steroids though. My GP said it can affect the bone marrow ... I believe in terms of red blood cell production. It causes them to break apart prematurely. They measure the reticulocyte count (immature red blood cells) in your blood while on Dapsone to see it's effects. People with a G6PD deficiency are more susceptible to Dapsone side effects. Here's a leaflet from the British Association of Dermatologists explaining Dapsone in more detail ... https://www.skinhealthinfo.org.uk/condition/dapsone/ Your dermaotolgist would need to determine how long to be on Dapsone. I guess if the antibodies in the skin are reduced over time with a strict gluten-free diet, then the need for Dapsone is less likely when glutened. So, Knitty Kitty's advice on Niacin and all things dermatitis herpetiformis related is spot on. Have you had the skin biopsy yet? -
By disneyfamilyfive · Posted
Good morning, I thought I’d quickly update this post. A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation. It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit. Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps. He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely. 5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue. GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. -
By knitty kitty · Posted
@Matt13 I understand where you're coming from. Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps. We make histamine in our bodies as a useful neurotransmitter (causing alertness), and also as a response in the immune system. Histamine is made and released by Mast Cells. Mast Cells can become hypersensitive to stimulus and release histamine easily, like having an itchy trigger finger. Mast Cells need Thiamine Vitamin B 1 Benfotiamine in order to NOT release histamine. Mast Cells that do not have sufficient Thiamine release histamine easily and at the slightest provocation. Plants and other animals make histamine, too. By removing high histamine foods from the diet, more histamine can be removed from the body. We need Pyridoxine, Vitamin B 6, Vitamin C, Cobalamine, B12, and Thiamine B1 to make Diamine Oxidase, an enzyme that breaks down histamine. If we don't make sufficient DAO ourselves, DAO supplements are available over-the-counter. Removing Nightshades (tomatoes, potatoes, eggplant and peppers) was very helpful. Nightshades contain alkaloids that cause Leaky Gut Syndrome wherein large molecules of food can pass through the walls of the intestines into the bloodstream, traveling to other organs and structures where they promote inflammation. After a few days on the low histamine Paleo diet, the Autoimmune Protocol diet, I started feeling better. My diet was really restricted, but I felt so much better, I stuck with it. Eating foods that were easy to digest and low in histamine allowed time for healing. After a few weeks, I was ready to add one food at a time (two week period) back into my diet. I had setbacks when I ran into a food my body didn't like, and had to go back to the start, but it was worth doing. Celiac is a marathon, not a sprint. Blood tests are not accurate measurements for various B vitamin deficiencies. Vitamin levels in the bloodstream are different from the amount stored inside cells inside organs where they are utilized. You can have symptoms of a deficiency yet have "normal" blood levels. The best way to test for a B vitamin deficiency is to take it and look for health improvement. B vitamins are easily excreted because they are water soluble. Malabsorption in Celiac can affect all the vitamins and minerals our bodies need, not just one. Do talk to your doctor and nutritionist about supplementing while healing. -
By Morgan Tiernan · Posted
A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was absolutely right! Currently waiting for biopsy confirmation though. In terms of swollen lymph nodes, I get this when my rash is present. Mostly in my neck and they’re a lot more swollen if I’ve been cross-contaminated with gluten and when the rash is at its worst! -
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