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Recently Diagnosed...many questions


johnojohno

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johnojohno Apprentice

Hey guys

The topic title is actually misleading a little, I had an endoscopy in december, was told it was a little inflamed and they were pretty sure it wasnt celiacs, just a minor gluten intolerance. 

Long story short, its now July, had to cancel appointments due to moving to london. tried ringing for results for a long time. Nothing. Last week, find out I am celiac with some eroded Villi.....from December

Anyway. I have been gluten free for 2 weeks. I have had problems with kidneys aching, stomach pains, bladder pains, all sorts. before hand, I cut the gluten down, but was not entirely gluten free. I was told that it was early stages. 

 

Gluten Free I am not finding so hard, but I am waking up EVERY morning with stomach pains still. Or bladder, or whatever. Ill go back to the docs soon. Ive been having a lot of fruit and I am wondering if the fibre is not letting my stomach settle. Also that dairy products might be causing the issue. I was basically trying to absorb some nutrients to get rid of my hurrendous exhaustion, I cant be malabsorbing as I still have Villi. 

 

Any advice, anything would be great


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Ennis-TX Grand Master

Drop the dairy and if your eating any drop oats. Enzymes to digest lactose are produced by the tips of the villi, so your going to have issues with til they heal. Remove for a few months at least change over to a nut based milk, some hard cheeses might still be fine but you might want to change over to vegan/dairy free versions of it for a while then try reintroducing them.

 Fruits yeah large amounts of sugar are more of a issue then the fiber and bother are going to cause bloating, gas, etc. Try eating more dark green leafy veggies, smaller amounts of fruit and eating nuts, seeds, etc in there to up fiber without the sugar and get some fats in there that way,

If you eat meats stews, soups in large pots are going to be your friend for awhile easy, simple, cheap, and can be done in batches, and portioned off for a week at a time.

Check out the 101 thread for more info, I think some of our EU members can help you more with finding products that I can, same with supplements.

Cross contamination and chances your still eating gluten unknowingly are highly possible there is a HUGE learning curve refer to hte 101 thread for more info.

That covers the basics. welcome to the club?

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

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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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