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If Symptom Free Do I Still Need To Be Very Careful


Glacier Guy

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Glacier Guy Newbie

I was diagnosed nearly 7 years ago, and have been on what I think is a strict diet. On ocassion I eat things that I think are gluten free, but not 100% sure. If I don't have symptoms, is the food okay, or do I need to do further research before eating foods. I have heard that some people are very sensitive and others are not. I have seen where instructions say, "if you are a very sensitive Celiac, then avoid this food." Does that mean if we are not as sensitive as others, we can eat those foods.

I'm also curious as to what damage is done if we do get some gluten. Is the damage the same no matter how much gluten we may eat?

I hate to act so naive, but I thought I was luckly that I don't get deathly ill if I get some gluten, but maybe I'm not so lucky. It may be that I'm not as careful as I should be.

Thanks so much for any information you can provide.


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AndreaB Contributor

Tom,

If you were diagnosed Celiac or gluten intolerant than you need to be gluten free for life, even if you have not symptoms. You will still do damage to your intestines if you are celiac, you're body will stick attack the invading protein from the gluten. If you were gluten allergic than you could try little bits of gluten to see if you still reacted but allergies are different to intolerances in that allergies can (but not always) be forgotten by the body.

Ursa Major Collaborator

Tom, some people don't get any apparent symptoms at all when eating gluten, but the damage to their intestine is still occurring. I think it's almost better if you get really sick when eating gluten, because it will make you more careful, and you'll always know when you've eaten something wrong.

Since tiny amounts of gluten don't make you sick, you just have to make sure you really read labels and are diligent about avoiding cross contamination. Obviously, your villi have healed, but your celiac disease can never be cured, and you can NOT get careless, unless you want to get sick again, or maybe get cancer of the digestive tract somewhere.

We have debated here many times whether the amount of gluten matters or not. We really can't answer that, and neither can the experts it seems. What has been documented is, that the villi will get damaged each time we eat gluten, and it takes about three weeks to heal from each of these episodes. So, if every three weeks you ingest gluten, you'd eventually be really sick again, and your villi would be destroyed, in my opinion.

So, enjoy your good health, and don't get careless!

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    • trents
      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
      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
      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
      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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