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Recent Activity
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- Richardo replied to Richardo's topic in Dermatitis Herpetiformis5dermatitis herpetiformis with all grains
I've never had problems with quinoa but I always rinse it well before cooking in case it's processed with other grains. I think quinoa is classified as a seed. I can't eat grains at all but I can eat all seeds. Ain't the human body a pandora's box of surprises??? -
- Morgan Tiernan posted a topic in Dermatitis Herpetiformis0How to navigate living with dermatitis herpetiformis
Hi there! I’m new here and very grateful to any information that can be provided on the topic of Dermatitis Herpetiformis. I’m 22 years of age and have been struggling with this rash since the age of 19. We’re pretty sure it was brought on after having Covid (which resulted in shingles on my backside and strep a year or so later ) I struggle with inten...- coeliac
- dermatitis herpetiformis
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- Matt13 replied to Matt13's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms29Can food allergies like milk and soy flatten villi?
Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so... -
- Rogol72 replied to Richardo's topic in Dermatitis Herpetiformis5dermatitis herpetiformis with all grains
@Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. -
- trents replied to Richardo's topic in Dermatitis Herpetiformis5dermatitis herpetiformis with all grains
We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and...
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I've never had problems with quinoa but I always rinse it well before cooking in case it's processed with other grains. I think quinoa is classified as a seed. I can't eat grains at all but I can eat all seeds. Ain't the human body a pandora's box of surprises??? -
By Morgan Tiernan · Posted
Hi there! I’m new here and very grateful to any information that can be provided on the topic of Dermatitis Herpetiformis. I’m 22 years of age and have been struggling with this rash since the age of 19. We’re pretty sure it was brought on after having Covid (which resulted in shingles on my backside and strep a year or so later ) I struggle with intense itching and burning which often cannot be reached by a scratch. A find myself applying pressure on the skin in the early stages of it developing. Once it surfaces, small fluid filled blisters can be seen, most often on my chest, back, forearms and forehead (but has sometimes been in more places). We have only recently discovered its link to eating gluten, however getting doctors to listen to me has been a real struggle. They refused to test me for coeliac and offered me no follow up information or care plan, leaving me with no choice but to follow a gluten free diet off my own whim. The rash instantly improved in a couple of days, but of course I now struggle to be tested appropriately without having to go back to eating the dreaded stuff. Anytime I reintroduce it I become so unwell with dermatitis herpetiformis and tiredness. I am also struggling with outbreaks in between taking oral steroids to treat a flare up after being glutened (steroids provided by my private dermatologist thank goodness for him!) We’re now in the process of waiting for a skin biopsy, but I’m finding the outbreaks in between difficult to manage. I enjoy going to the gym but also dance competitively. Sweat seems just to irritate like nothing else. dermatitis herpetiformis has got in the way of so many aspects of my life already and I’m struggling now to navigate it affecting me doing the things I enjoy. I’m after some advice from anyone who can relate or has experience of similar issues. I struggle to get this information from health care professionals so would love any advice or support from anyone if possible. Thank you so much for your time -
Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so refractory is out of the question based on my talk with dr. If Scott is right and there are so many intolerance in food for celiac what is left to eat?? And now histamine? I mean what should i eat? Maybe gastritis is doing all this trouble? Thanks Kind regard
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@Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains.
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We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
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