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Me again, small update

PJP

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PJP Rookie
PJP
Posted

Hello, 

I had my blood tests and decided to go gluten free and the pain was too much. That was almost a week ago. I ate something out today and now the pain is back.. I think it had gluten in :/ oops. I'm ringing up to get my results (well hopefully) Being gluten free has made things so much better, See what the bloods say. I'll update tomorrow :)

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Ennis-TX Grand Master
Ennis-TX
Posted
33 minutes ago, PJP said:

Hello, 

I had my blood tests and decided to go gluten free and the pain was too much. That was almost a week ago. I ate something out today and now the pain is back.. I think it had gluten in :/ oops. I'm ringing up to get my results (well hopefully) Being gluten free has made things so much better, See what the bloods say. I'll update tomorrow :)

Yeah we normally suggest not eating out til you have it under control and only eating out at places you can trust after talking at length with the manager and staff. Check FindMeGluten Free app if you insist on eating out, and look for places with multiple good reviews.  Perhaps invest in a tester like nima or EZ-strips (tricks to use them right and they sometimes are iffy)

Stick to a whole foods diet for the first few months to help boost healing, many find removing dairy and oats for the first few months also is a huge help. You can try reintroducing dairy later on but celaics disease damages your villi and the tips of those produce the enzymes to break down dairy so issues are very common til some healing is done. Oats in some cases for celiacs can cause the same reaction as gluten (10% of celiacs if I recall) and even the gluten-free ones can not be consumed by them.

Take it you have checked the 101 thread and cleaned out the kitchen, and done all the things you need to do. Be careful of CC, and what products you trust, Sticking with whole foods is a safe bet but otherwise look for the gluten-free certification marks. and read ingredients like a hawk.   Soon you will have it down, and even the veterans like me mess up or get tricked sometimes by products so no worries just get back on that horse to healing,

Good Luck

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  • Recent Activity

    1. Rogol72
      - Rogol72 replied to Richardo's topic in Dermatitis Herpetiformis
      4

      dermatitis 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.
    2. trents
      - trents replied to Richardo's topic in Dermatitis Herpetiformis
      4

      dermatitis 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...
    3. Richardo
      - Richardo replied to Richardo's topic in Dermatitis Herpetiformis
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      dermatitis herpetiformis with all grains

      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today...
    4. trents
      - trents replied to Richardo's topic in Dermatitis Herpetiformis
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      dermatitis herpetiformis with all grains

      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain...
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      dermatitis herpetiformis with all grains

      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to ...
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    • Rogol72
      dermatitis herpetiformis with all grains

      By Rogol72 · Posted

      @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
      dermatitis herpetiformis with all grains

      By trents · Posted

      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.
    • Richardo
      dermatitis herpetiformis with all grains

      By Richardo · Posted

      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      dermatitis herpetiformis with all grains

      By trents · Posted

      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
      dermatitis herpetiformis with all grains

      By Richardo · Posted

      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.
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