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Help. Gluten free and still suffering from horrible gluten rash

Meg G

By Meg G
in Dermatitis Herpetiformis

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Meg G Newbie
Meg G
Posted

I’ve been gluten free for months. About 4 weeks ago I cut out all grains including cassava flour, all nuts and seeds, coffee, chocolate, sugar, corn, iodine, white potatoes, onions and garlic (doctor’s recommendation) night shade vegetables, alcohol, legumes and dairy. This gluten rash started about 8 months ago. Unfortunately it took me a few months to realize what it was. I’m considering eliminating eggs next. Right now my diet consists of eggs, fruit, vegetables, all things coconut, meat and seasonings, lots of water from an RO system and occasionally hot tea. Any advice you would have would be greatly appreciated. Thank you!

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Meg G Newbie
Meg G
Posted
  • Author

I believe I found my solution! After lots of reading I’m eliminating eggs and starting to follow the AIP diet. Crazy learning curve with this new diagnosis!

Scott Adams Grand Master
Scott Adams
Posted

I had to look up the AIP diet, it looks to be the "Autoimmune Protocol Diet." Just so you know, eggs are 100% gluten-free, and should not trigger DH, so this may not be your answer. Certainly some celiacs and others have egg intolerance, I had chicken egg intolerance temporarily for a few years at the time of my celiac diagnosis (duck eggs caused me no issues), but you may need to examine your diet in more detail to eliminate hidden gluten. For example you mentioned cassava flour, and flour is often milled in facilities and with the same machinery that mill other flours. 

NoGlutensToday Enthusiast
NoGlutensToday
Posted

I had a similar problem ... I went gluten free but continued to have DH rash for years!

I only found relief when I started following the Fasano Diet, which was created by Dr. Allesio Fasano. He's the top guy when it comes to studying celiac, so if you haven't already read up on him and his dietary recommendation, do so. He wrote an excellent book called Gluten Freedom, which I recommend.

Are you still eating processed foods? I've discovered that even after getting things under control I cannot handle processed foods, even if they are certified gluten free. I gather that I have an extremely low tolerance for gluten (certified gluten free products are able to contain up to 19 parts per million, depending on the certification body).

Eat natural, healthy foods. Be patient. Dapsone may help with the rash, but ultimately it can't resolve the problem if you are still getting exposed.

Meg G Newbie
Meg G
Posted
  • Author
On 12/13/2020 at 4:39 PM, NoGlutensToday said:

I had a similar problem ... I went gluten free but continued to have DH rash for years!

I only found relief when I started following the Fasano Diet, which was created by Dr. Allesio Fasano. He's the top guy when it comes to studying celiac, so if you haven't already read up on him and his dietary recommendation, do so. He wrote an excellent book called Gluten Freedom, which I recommend.

Are you still eating processed foods? I've discovered that even after getting things under control I cannot handle processed foods, even if they are certified gluten free. I gather that I have an extremely low tolerance for gluten (certified gluten free products are able to contain up to 19 parts per million, depending on the certification body).

Eat natural, healthy foods. Be patient. Dapsone may help with the rash, but ultimately it can't resolve the problem if you are still getting exposed.

Thank you so much for your advice! I’ll definitely research that diet. When I eat anything processed even the cleanest chicken broth I can find I have had reactions. 

Meg G Newbie
Meg G
Posted
  • Author
On 12/8/2020 at 12:27 PM, Scott Adams said:

I had to look up the AIP diet, it looks to be the "Autoimmune Protocol Diet." Just so you know, eggs are 100% gluten-free, and should not trigger DH, so this may not be your answer. Certainly some celiacs and others have egg intolerance, I had chicken egg intolerance temporarily for a few years at the time of my celiac diagnosis (duck eggs caused me no issues), but you may need to examine your diet in more detail to eliminate hidden gluten. For example you mentioned cassava flour, and flour is often milled in facilities and with the same machinery that mill other flours. 

Thank you! Since the original post I purchased my own pots to cook my food completely separately from my family. I was careful before now I’m not taking any chances. The forum here has helped tremendously! I Can’t express my gratitude enough for this forum. DH is not only painful but emotionally crushing. With The help of my doctor and advice from this from I’m 95% healed. Thank you!

GFinDC Veteran
GFinDC
Posted

The problem with eggs is the iodine content, not gluten.  People with DH seem to find relief faster when they limit iodine.  Per posts on the forum at least

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  • 5 months later...
robird Newbie
robird
Posted

Yes, iodine can cause problems like this. I had to limit my egg intake to control that. Fortunately I can eat egg, but if I eat it for breakfast for 3-4 days in a row, I’ve got some issues.

Fasano diet is great. 

For anyone having DH I’d recommend to start with that, or just elimination diet. Live everything out until the DH symptoms disappear. I mean really everything. For example eat rice with grilled meat with salt and some fruits plus salad. Of course everything must be prepared by you ideally in a separate kitchen with “clean” tools. Prepare to do it for several weeks. Dont worry, you’ll survive. Thats a good starting point - from there you can start reintroducing items one by one.

  • 2 months later...
CeCe22 Explorer
CeCe22
Posted
On 12/20/2020 at 10:17 AM, GFinDC said:

The problem with eggs is the iodine content, not gluten.  People with DH seem to find relief faster when they limit iodine.  Per posts on the forum at least

When you eliminate iodine from your diet does it not cause thyroid problems. Been reading about limiting iodine but not sure what to do about problems it can cause if you eliminate iodine. Not sure how to do this. A newbie here!  😃

Scott Adams Grand Master
Scott Adams
Posted

You definitely need to eat a certain level of iodine, otherwise you could have serious health issues. Most people plenty of iodine in their foods, but for some people with DH it is important to not eat foods with high levels of iodine, like certain sea foods, sea weed, etc. Nobody should totally eliminate all iodine.

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