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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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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

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      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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