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Does Anyone Have Any Idea?

Di2011

By Di2011
in Dermatitis Herpetiformis

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Di2011 Enthusiast
Di2011
Posted

I've been seriously diet restricted for about 3 months now.

My diet is so restricted that I can test everything - everything that goes in through my mouth or skin. I wait an appropriate time for each and every reaction to my DH. Nothing otherwise " new " goes in until I know the DH remains calm. Today I had the most minimal contact ((how much iodised salt or xanthan gum or CC can be in 2 teaspoons of guacamole from an avocado farm in regional Australia???)) that my mental state is about to take a serious decline.

I'm starting to feel like I'm a freek of nature DH sufferer. I'm happy to eat meat, rice, veg and fruit because thats all that works but I wonder why why xantham gum (E415) / or iodine are so evil to me. I google , read and research like a maniac but I just can't get the answers I need.

Does ANYONE have this much trouble or what am I missing?

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weluvgators Explorer
weluvgators
Posted

Super sensitives that I converse with have these struggles, including myself and my kids. Our family also has gluten "allergy" in addition to our celiac, and it stinks. We had to remove gluten from our environments to stop our skin issues, as it was chronic skin eruptions when we were simply around other people eating the stuff -high density, high gluten concentrations being the worst offenses. I hope you can find relief soon. We did find that low level contamination of our ingested foods was also contributing to our chronic, lingering issues. Gluten home testing and collaboration with other gluten home testers and exquisitely sensitive people helped us make progress.

In my understanding, isn't iodine offensive only if there is continued gluten exposure? I thought it took BOTH gluten and iodine.

When we started to unravel our super sensitivity issues, it seemed we uncovered a lot of little missteps that simply kept us on the edge of reactions at all times. I wish I knew something more to help you. Have you been able to find a healthcare provider to work with? We have found it helpful to work with celiac savvy healthcare providers, but they can be very hard to find . . . And the good ones recognize that there is still a lot to learn from their patients!

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, all I can say is unfortunately we all have our freaky little things.

I can't do food preservatives - the natural ones are better but the synthetic ones send me over the edge. Red food dyes - FORGET ABOUT IT.

Iodine and gums are tough ones because iodine levels are high in lots of whole foods. Xanthan gum is in so many gluten-free processed foods...

In time your iga levels should fall, allowing you a bit more latitude on the DH. 5 months ago my DH would have sent me into a spiral - racing heart, mental mess, dripping and oozing sores, life on the couch with ice packs. This time I had red skin, itching, and while nervous I didn't have the accompanying uncontrollable all-over body experience. The rash barely developed bumps and they were pinprick sized...not big like pennies.

I'm going through something similar right now wondering WHAT AND HOW MUCH IT TAKES TO GIVE ME A RASH. I got into something last week and although I've managed to put the fire out withdrawing iodone I STILL got a blister last night. Just out of nowhere...didn't really itch, was small, no other red burning mess...just a little lone blister. Wtf??? I went to bed last night wondering what I'd look like in the morning....

RiceGuy Collaborator
RiceGuy
Posted

I think guacamole contains too many things to know if iodine and/or xanthan was the problem.

I think I'd try a pinch of xanthan mixed into a glass of water as a test for it. That way there'd be no question as long as you're careful everywhere else, to be certain that no other culprits might have gotten in under your radar.

pricklypear1971 Community Regular
pricklypear1971
Posted

I've been seriously diet restricted for about 3 months now.

My diet is so restricted that I can test everything - everything that goes in through my mouth or skin. I wait an appropriate time for each and every reaction to my DH. Nothing otherwise " new " goes in until I know the DH remains calm. Today I had the most minimal contact ((how much iodised salt or xanthan gum or CC can be in 2 teaspoons of guacamole from an avocado farm in regional Australia???)) that my mental state is about to take a serious decline.

I'm starting to feel like I'm a freek of nature DH sufferer. I'm happy to eat meat, rice, veg and fruit because thats all that works but I wonder why why xantham gum (E415) / or iodine are so evil to me. I google , read and research like a maniac but I just can't get the answers I need.

Does ANYONE have this much trouble or what am I missing?

Did you make the guacamole or purchase it?

Did you eat it on chips?

itchy Rookie
itchy
Posted

Hi diandliam:

As we've discussed elsewhere, we DH sufferers really need some research to get understand what is causing these responses. I've written a letter to my national celiac association requesting them to undertake a research project. I urge others to write to their national associations in a similar vein.

You can probably draft a better letter than mine, but here's what I wrote:

Dear friends,

I am writing to you to urge the Canadian Celiac Association to create or otherwise promote a research project to help people suffering from Dermatitis Herpetiformis.

We need a controlled study to monitor the effects of small quantities of gluten and/or iodine on people who are already following a very restricted, gluten free diet.

I say this because DH sufferers experience very annoying and debilitating symptoms as a result of consuming very small quantities of gluten and/or iodine, and/or other substances in their diet.

It is often very difficult to determine the intake event that caused the aggravated symptoms, in part because of apparent variability of response time, amount of response, etc. Therefore it becomes difficult to adjust one's diet, and eliminate suspect food.

We need longitudinal studies in which volunteers with DH are exposed to very carefully measured amounts of gluten, iodine or other aggravating materials, and their responses measured over time.

If you have questions about what I am suggesting, I would be eager to discuss these research needs with you.

Sincerely,

squirmingitch Veteran
squirmingitch
Posted

Excellent suggestion itchy & an excellent letter.

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GFinDC Veteran
GFinDC
Posted

I never buy pre-made guacamole. I always make it myself. It is so easy to make and you get it fresh. I saw a consumer test thing once where they rated various store bought gaucamoles. Some of them had no avocadoes in them at all! Plenty of green food coloring though..

irish daveyboy Community Regular
irish daveyboy
Posted

I've been seriously diet restricted for about 3 months now.

My diet is so restricted that I can test everything - everything that goes in through my mouth or skin.....I'm happy to eat meat, rice, veg and fruit because thats all that works but I wonder why why xantham gum (E415) / or iodine are so evil to me. I google , read and research like a maniac but I just can't get the answers I need.

Does ANYONE have this much trouble or what am I missing?

You may find this article interesting.

https://www.celiac.com/articles/21710/1/Could-Xanthan-Gum-Sensitivity-be-Complicating-your-Celiac-Disease-Recovery/Page1.html

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