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Biopsy Or Enterolab?


jessiU

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jessiU Newbie

I self-diagnosed myself with celiacs 5 months ago and since have been on the gluten-free diet and was pain free until just recently. I recently have had a huge flare up and have been in severe R sided pain for the past 4 weeks, which I had for 2 yrs before discovered celiacs. I went to the Dr. because I am in so much pain and can't get pain relief. The doc wants me to get a colonoscopy. I also mentioned about a biopsy and this will likely occur as well. Will the test results be valid since I have been gluten-free for a little while? Is it recommended to go through Enterolab? What tests are typically ordered, since they offer so many? Has anyone had their insurance company cover the costs, or is it all out of pocket? I am getting married in 3 weeks and then going on my honeymoon a week later and just want to feel good in time for the big events. Responses are greatly appreciated! Thanks.

Jessica


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gfpaperdoll Rookie

Check for appendicitis & gall bladder problems. Just get the Enerolab.com tests, the best & easiest route to go.

In the meantime go to a diet of plain meats, veggies, fruit, eggs, nuts, seafood. Do not eat any white potatoes, unless that you know for sure that you can handle them. Skip all grains except maybe for some white rice, I would not use brown rice as I & others have had a problem with brown rice. I would not be eating any of the gluten free goodies at this time. I would check into the Paleo diet for the short term as that is the safest diet. which is no grains, no dairy, no legumes (peanuts, beans, peas, lentils), no white potatoes.

if you are not having a gluten free wedding cake, then I would not be tasting it or you could likely be ill for the whole honeymoon.

I am sure others will chime in with some more advice. wishing you a speedy recovery & a happy wedding season!!!

Rachel--24 Collaborator

Hi,

Personally, I would skip Enterolab testing...unless you're interested in the gene tesing to see if you have a genetic predisposition for Celiac.

Otherwise Enterolab cannot diagnose Celiac Disease....the stool test will only tell you that you're sensitive to gluten which you've already been able to determine with a positive response to the diet. In other words it wont tell you anything that you dont already know.

I paid for all the enterolab testing....if I knew what I know now I would have just gotten the gene test.

I would pursue testing to make sure there arent any other issues going on.

In the meantime you might want to consider eliminating dairy for now. Hopefully you will be pain-free for your wedding and honeymoon! :)

AndreaB Contributor

I agree with Rachel. The gene testing is good if you want to know that, but you already know gluten is a problem.

It sounds like further testing needs to be done to see what is causing the pain you are having.

I would go one step further than Rachel and suggest gluten, dairy and soy free if you aren't already off the last two.

Most insurances don't cover Enterolab. I think some people have gotten part paid due to deductibles being met, but not the whole thing.

happygirl Collaborator

You could have something going on other than a gluten problem, so it may be helpful to be evaluated for other things.

If you have been gluten free, and truly have Celiac, your biopsy may not be positive. But, to me, the purpose of the endo/colonoscopy will be to look for other things besides Celiac.

Are you 100% gluten free?

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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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