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person011

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person011 Rookie
person011
Posted

I was tested for gluten tolerance in early May and tested positive by only four points. My mom insisted that since I tested positive only a little that I should not worry about it. I decided to get retested this week. I tested positive by the same amount. I guess my question is for those of you going gluten free, how far were you off of the normal range?

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CarlaB Enthusiast
CarlaB
Posted

How were you tested?

SunnyDyRain Enthusiast
SunnyDyRain
Posted

I was tested IgA +2 from negitive and IgG, at the very top of negitive. I was just going though the similar thing... see my post "Just a little bit Celiac?". That may help, it helped me quite a bit.

person011 Rookie
person011
Posted
  • Author

My IgA was 39 and normal is considered 35 and under

CarlaB Enthusiast
CarlaB
Posted

Did they do the rest of the celiac panel?

Are you having symptoms?

Guest j_mommy
Guest j_mommy
Posted

Here was my Dr's thought when I got tested.....

She thought had I gotten tested prior to having my son I would have tested as you did...a little elavated, b/c even prior to having my son I had some symptoms. Pregnancy was my "triggering" event..or so they think. Life stress, divorce,marriage ect can "trigger" the gene.

When I was tested in April I was high;y elevated!!!

ravenwoodglass Mentor
ravenwoodglass
Posted

If your test was at all postive, even one point it is positive. Even if it had been totally negative it still would not mean for sure you are not celiac. I have always been blood test negative even when close to death and as for the rest of my family they all had low positives, one member was only positive by one point but all have benifited greatly by being gluten-free.

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Rosewynde Rookie
Rosewynde
Posted

Why'd you get tested? Are you having symptoms?

As far as I know if you blood work test is positive your Celiac, that's what I was told. My real proof was trying the diet and my flu symptoms slowly went away as soon as I stopped eating wheat, rye, barley, and oats. If your having medical problems and that is why you were tested then try the gluten free diet and see how you feel after a couple of months. If the symptoms go away then Gluten is a problem. From what I've read and been told Celiac Disease is not a matter of "just a little bit". There are serious complications that can come if your keep damaging your intestines by exposing them to the gluten.

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      - trents replied to Richardo's topic in Dermatitis Herpetiformis
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      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...
    2. Richardo
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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...
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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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    • 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.
    • trents
      Celiac related issues

      By trents · Posted

      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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