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Could it be celiac?


Sarahf538

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Sarahf538 Newbie

Hi everyone! I am new here! I am a 23 y/o female and I’ve been struggling with alternating constipation and diarrhea for years. I had lab testing done last year and it showed low iron levels. I’ve been feeling bloated, nauseous, tired, and tingling occasionally in my hands and fingers. I have a history of reflux and ulcers from a prior endoscopy 8-9 years ago. I have no family history but wondering if I could still have celiac? I’m scheduling a endo/colonoscopy to be sure. I also took a food sensitivity test last august and I had a higher than normal reaction to gluten, wheat, barley, and rye. Any advice would be appreciated!!  


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trents Grand Master

Welcome to the forum, Sarahf538.

First, by "food sensitivity test" do you mean you had food allergy testing done? Celiac disease is not an allergy but an autoimmune disorder and so it is connected to an entirely different immune system pathway than are food allergies.

All the symptoms you describe are common to either celiac disease and/or gluten sensitivity. Celiac disease does damage to the villi lining the small bowel. This is the area of the intestine where the nutrients from our food are absorbed into the body. Gluten sensitivity produces many of the same symptoms as does celiac disease but does not damage the small bowel lining. With celiac disease, the ingestion of gluten triggers an autoimmune response in the small bowel that produces inflammation. Over time, this inflammation severely damages the villi and so reduces our ability to absorb nutrients from our food.

Have you had a celiac antibody blood test done yet. Usually, the edoscopy/biopsy of the small bowel, when done, comes after the blood antibody test.

Sarahf538 Newbie
1 minute ago, trents said:

Welcome to the forum, Sarahf538.

First, by "food sensitivity test" do you mean you had food allergy testing done? Celiac disease is not an allergy but an autoimmune disorder and so it is connected to an entirely different immune system pathway than are food allergies.

All the symptoms you describe are common to either celiac disease and/or gluten sensitivity. Celiac disease does damage to the villi lining the small bowel. This is the area of the intestine where the nutrients from our food are absorbed into the body. Gluten sensitivity produces many of the same symptoms as does celiac disease but does not damage the small bowel lining. With celiac disease, the ingestion of gluten triggers an autoimmune response in the small bowel that produces inflammation. Over time, this inflammation severely damages the villi and so reduces our ability to absorb nutrients from our food.

Have you had a celiac antibody blood test done yet. Usually, the edoscopy/biopsy of the small bowel, when done, comes after the blood antibody test.

Hi! Thanks for the welcome! And no it was not official allergy testing but a food intolerance test through a blood sample. I just thought I would include that because it seemed odd that I just happened to have a higher than normal response to all of those along with symptoms I am having. And no I have not had an antibody test. I spoke with a gastroenterologist and he suggested to go straight to the endo/colonoscopy because he wanted to look and see what was causing my problems. He did not mention a blood test.

trents Grand Master

If the endoscopy/biopsy shows no villi damage then you could still very well have non celiac gluten sensitivity. That's the value of the antibody blood test. Both celiac disease and non-celiac gluten sensitivity will give positive test results. And the antidote is the same for both conditions. Total avoidance of gluten for life.

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    • Rogol72
      @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
      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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