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New to Gluten Free need help!


Faelanwolf

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Faelanwolf Newbie

I am new here and rather new to a gluten free life. Found out I was severly intolerant to gluten about 8 months ago and it's been hell. Cutting out gluten was actually rather easy once I realized all the alternative options there are out there for foods I love. The issues I'm having are foods I have vetted and should be safe are setting me off. My stomach bloats to the point it feels like my ribs are  breaking and lasts for hours as gas moves, slowly, through my entire GI track. The pain is excruciating the entire time. I have tried everything, supplements, probiotics, gasx, prilosec, aloe juice, peppermint tea, ginger tea, hrat pads, even yoga!! Nothing seems to work. The worst part is it takes me out of any functionality as a human for days if not a week. This includes having to stay home from work and loss of sleep. What am I doing wrong? Please please help.


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Ennis-TX Grand Master
2 hours ago, Faelanwolf said:

I am new here and rather new to a gluten free life. Found out I was severly intolerant to gluten about 8 months ago and it's been hell. Cutting out gluten was actually rather easy once I realized all the alternative options there are out there for foods I love. The issues I'm having are foods I have vetted and should be safe are setting me off. My stomach bloats to the point it feels like my ribs are  breaking and lasts for hours as gas moves, slowly, through my entire GI track. The pain is excruciating the entire time. I have tried everything, supplements, probiotics, gasx, prilosec, aloe juice, peppermint tea, ginger tea, hrat pads, even yoga!! Nothing seems to work. The worst part is it takes me out of any functionality as a human for days if not a week. This includes having to stay home from work and loss of sleep. What am I doing wrong? Please please help.

Um this sounds like my run in with UC over the years, I kept a food diary and found that grains, carbs, fruit, large amounts of onion, garlic, or spices caused very painful bloat, distention, and bloody stools. I assumed it was bad gut bacteria for years and went low carb. I learned last year via colonoscopy that I had Ulcerative Colitis, and it would flare up to those foods (gluten, dairy, soy and peanuts also flare it up for others but I removed those for other reasons)

For now keep a food diary and try rotating to low carb diet, look up keto diet plans, drop dairy. Try it for awhile as this will be a 1 2 punch removing fermentable carbs in case you have SIBO Small Intestine Bacterial Overgrowth) or Candida. Sticking this diet and using stuff to regulate it like black walnuts, garlic, oregano will help kill off the bad stuff if you have it this will cause really bad die off at first but should resolve in a few week (look up cadida diet plans and foods also) And might try supplementing with CandidaFX (check amazon).


I might suggest getting tested for the above 3 things by a doctor and following up (Ulcerative Colitis, SIBO, Candida) , further question, were you tested for celiac? And if so have your gotten your antibodies rechecked to see if they are still raised?
 

kareng Grand Master
2 hours ago, Faelanwolf said:

I am new here and rather new to a gluten free life. Found out I was severly intolerant to gluten about 8 months ago and it's been hell. Cutting out gluten was actually rather easy once I realized all the alternative options there are out there for foods I love. The issues I'm having are foods I have vetted and should be safe are setting me off. My stomach bloats to the point it feels like my ribs are  breaking and lasts for hours as gas moves, slowly, through my entire GI track. The pain is excruciating the entire time. I have tried everything, supplements, probiotics, gasx, prilosec, aloe juice, peppermint tea, ginger tea, hrat pads, even yoga!! Nothing seems to work. The worst part is it takes me out of any functionality as a human for days if not a week. This includes having to stay home from work and loss of sleep. What am I doing wrong? Please please help.

Were you diagnosed with Celiac?  If so, maybe a follow- up blood test would help?  You could see if your antibodies are going down.

It might be that you have some other good issues, too?  Like lactose intolerance or a FODMAPs issue or a physical problem.  

But, once you have eliminated all that, you will want to eat very simple, one ingredient foods.  Maybe try " the Fasano gluten elimination Diet" .

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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.
    • trents
      Your chest pain could be related to the Sarcoidosis. "When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur." https://en.wikipedia.org/wiki/Sarcoidosis   The bowel incontinence could be caused by surgical damage (or scar tissue) to the cauda equina nerve bundle in the lumbar area of the spine. Or, it could be related to unintentional gluten exposure.
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