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charlotte-hall

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charlotte-hall Apprentice
charlotte-hall
Posted

I am 15, and got diagnosed late december 2011. I have been eating gluten free ever since diagnosis.

I hadn't gotten any better, so went for biopsy and blood tests. Results shown said I had TTG level of 289.. is this bad for 4 months gluten free? And also, I have not improved, still nausea, and light headed and dizzy and stomach pains. I'm really worried and scared, please can anyone tell me what to do? Also I'm apparently very senstive, and have had to cut out even gluten free labelled oats. I have heard that stuff labelled gluten free means its less than 20 parts per million, is even 20 still enough to make me ill?

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Metoo Enthusiast
Metoo
Posted

I am 15, and got diagnosed late december 2011. I have been eating gluten free ever since diagnosis.

I hadn't gotten any better, so went for biopsy and blood tests. Results shown said I had TTG level of 289.. is this bad for 4 months gluten free? And also, I have not improved, still nausea, and light headed and dizzy and stomach pains. I'm really worried and scared, please can anyone tell me what to do? Also I'm apparently very senstive, and have had to cut out even gluten free labelled oats. I have heard that stuff labelled gluten free means its less than 20 parts per million, is even 20 still enough to make me ill?

I don't know about your first part...but I got sick at first trying to continue gluten free oats, so I cut them out for the first 4 months gluten free, and was able to add them back in. You really need to not eat them for several months if they are bothering you, then retesting. The recommendation is that you refrain from gluten free oats until you are gluten-free for 6 months to 1 year. Apparently they think that people who have problem's with them the body may mistake it for gluten.

RiceGuy Collaborator
RiceGuy
Posted

So sorry to hear that you're not feeling better yet. It did take six months before I noticed any difference from avoiding all gluten. So I know it can take time. Have any of your test results shown even a slight positive trend?

I can tell you that I also cannot eat most certified gluten-free products which are tested to be under 20ppm gluten. So it is certainly possible that you're still getting too much gluten to begin healing. Many processed foods are produced on shared lines, making them unsafe, even when they don't intentionally contain gluten.

Are you certain that you've gotten all gluten-containing foods out of your diet? Have you discarded wooden utensils, scratched non-stick cookware, cast iron pans, etc? If you eat gluten-free breads, have you replaced your toaster with a dedicated gluten-free toaster?

Are you sharing gluten-free foods with family members who eat gluten? In case you don't already know, you need your own of certain foods, which are prone to being contaminated by other family members. For instance, mayonnaise will become unsafe once a knife with wheat bread crumbs has been dipped into it. Same with peanut butter, jelly, etc.

Also, you may need to cut dairy products from your diet, at least for awhile, until you've healed enough. The proteins in dairy are often a problem until sufficient healing has taken place.

mamaw Community Regular
mamaw
Posted

Being gluten-free for just over four months may not be enough time given for your body to heal. For some healing is quick & for others two three years...

Plus are you off dairy? You sinply may be also reacting to other foods even if they are gluten-free..

you said gluten-free oats bother you.. I was always told not to eat gluten-free oats for at least two years after going gluten-free...Its just to hard to handle while trying to heal your intestinal tract..I've been gluten-free almost ten years , I eat gluten-free oats but still I can only handle 1/2cup maybe twice a week...never ate them for over five years.....at the beginning...

As you continue the gluten-free diet you will find things that bother you that you never even gave a thought to.. Plus that being said you may be a person who can not tolerate no gluten so eating out & such may become off limits to you...

CC may also be why you still feel poorly...Recheck what you or your parents are cooking with for you.. Check all scratched coated pots & pans, plastic utensils, toaster,plastic colander, crumbs on counters...

No double dipping in jars & butter tubs.Also hidden sources of gluten, soy, malt, lipstick.......toothpaste

Plus for many super sensitive pet foods for all pets...should be checked...

hth

mamaw

charlotte-hall Apprentice
charlotte-hall
Posted
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Thank you!

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