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amy31

Member Since 07 Jun 2012
Offline Last Active Oct 01 2012 04:57 AM
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Topics I've Started

Cross Contamination Questions

29 August 2012 - 09:23 AM

No one needs to answer all my questions, and I don't mind getting a variety of different opinions either. I know some people experience symptoms more easily than others from very small amounts of contamination.

A bit about me: I am new at gluten free living, although I've read quite a bit. I am a frugal shopper, like to buy the store brands or in bulk, and do not like expensive products if not necessary :). (I do buy gluten-free oats.) So I'm trying to learn what are reasonable precautions, but I don't feel like I need everything that I eat to be certified gluten free. After all, I live in a wheat-eating household, so I don't expect to never meet with a tiny bit of contamination from time to time.

1. Which of the following products would you not feel safe in buying unless they were labeled gluten-free: Millet, buckwheat, popcorn (unpopped), millet flour, rice flour, cornmeal, buckwheat flour, soy flour?

2. Do you feel it necessary to contact the manufacturer for every food product you buy if not labeled gluten-free (obviously with no gluten in the ingredients)? How about for things like: canned tomatoes, spaghetti sauce, canned beans, salsa, dried fruit, nuts, and ketchup? How about corn chips?

3. Do you feel that items with allergy warnings (may contain traces of wheat) are too risky? How about "Processed in a facility that also processes wheat"? Do you make any difference between those two?

4. I contacted my favorite bulk health food distributor, which packages their foods in a mixed facility. They said, "We do our best to clean the equipment between products, but cannot fully guarantee that gluten is not present on the equipment." Personally I feel like I would buy from them. What do you think?

5. The mill that supplies their grains "does clean their equipment between product runs, but again, cross contamination is still a possibility." Is it too risky to buy grains/flours from a non-dedicated mill?

Thank you so much for your input!

So The Verdict Is...

17 August 2012 - 04:36 AM

So the verdict is...that I do not have a definite diagnosis.

I had really been wanting something definitive. Some here will recall me posting earlier about my complete celiac panel, which included DGP (IGA and IGG), TTG (IGA and IGG), EMA IGA and total IGA.

Total IGA was normal and all celiac markers were normal except TTG IGG, which was 11, with the normal range 0-5. This test was taken 4 weeks after a 2-week-long gluten free experiment. The doctor said it was not a definite diagnosis but pointed in the direction of celiac disease, and advised a gluten-free diet.

In case that gluten-free experiment could have affected the test results, and wanting something more definitive than the TTG IGG, which seems to be viewed as not very definitive in IGA-sufficient individuals, I ate gluten for 3 full months, then had TTG IGA and DGP IGA retested. They still came back normal.

I had had a strange bout of sickness and was suffering insomnia, flu-like symptoms, loss of appetite, and cramps, so this prompted me to really want to rerun the testing. Immediately upon return from the doctor I went gluten-free and have been for the ensuing two weeks. I'm not feeling better than usual yet, but bathroom problems have largely resolved, although this problem was showing some improvement even before I went gluten-free so it is hard to tell.

I was and am determined not to go for the endoscopy, because I don't feel it is worth the huge cost in our circumstances. However I had really hoped for something definitive with the bloodwork.

It seems from what I read, that the TTG IGG still gives you a high chance of being celiac. However, I don't know if I'm celiac, and because I haven't really recovered yet I don't know if I'm even gluten intolerant!

I have no problem sticking to the gluten-free diet (no cheating), but because I'm living in a house with three people eating gluten, including a toddler and preschooler who need help with their eating at the table, etc., and because I'm tired, I'm afraid there is cross-contamination going on. I also do lots of flour baking/cooking for the rest of the family. And I'll admit that it is hard to be motivated about things like new cutting boards and wooden spoons, and leftover toddler food if it didn't seem to have contacted any crumbs (you get the picture!) as it would be if I could say, "I know I have a problem with gluten and I know this effort is worth it because I know I'm going to get better if I keep extremely cautious about this."

Also I wanted to know if my girls were in genetic danger, and without a diagnosis I'm not sure of that either, but I'm going to go ahead with testing for the older one, and a gluten-free trial for the younger one (still nursing), because they both have symptoms of possible intolerance.

So I think I just have to accept the lack of certainty and move on. I know a lot of you here have done that. I don't know, however, if I should consider myself very likely celiac, and do the diet and not look back, or consider myself not celiac and just try the diet for a few months, then challenge with gluten to see what happens.

Next Step To Take

25 June 2012 - 09:35 AM

I so appreciated those who wrote a couple of weeks ago when I received my test results. Ever since then I have been uncertain what to do next.

Briefly, I'm 31 and have several symptoms including loose stools and diarrhea, gas, abdominal cramping going down into the legs, abnormal level of fatigue, mild feeling of loss of balance/lightheadedness, canker sores, headaches,and went through infertility in the past.

I had the full celiac panel, am not IGA deficient, and came back positive only for IGG TTG with 11, and the top of the normal range being 5. The PA who did the testing felt it pointed to celiac but was not definitive, and advised me to either go for a biopsy or to start a gluten-free diet as a trial. I did not want to do that, because 4 weeks before my test I had tried two weeks of gluten-free already, and 2 weeks before that I had tried 1 week of gluten-free. I did not want to do any more experimentation without first ruling out celiac. If I can rule that out I'll be happy to go gluten free.

I called U. of Chicago celiac disease center and the woman there did not think that their doctors there would have recommended a biopsy for me with a test result like that.

I've been waiting it out till I can have a good three months since my gluten-free experiment to retest again, but because of the concerning symptoms, and the fact that I do not even know if I am "barking up the wrong tree" altogether, it is kind of scary to keep on, not knowing what I'm dealing with. I also had a high reading on the "alk phos" test, 182, with the top of the normal range being 99, and I wonder if I could have bone loss. The doctor thought that reading could be not a problem, and did not pursue it. I've been pregnant and/or nursing for the last over 4 years, and still am nursing. So I feel scared in a way, not knowing if I'm hurting myself, but not sure how to find out! Unlike many others who do a gluten challenge, I do not have past experience of feeling good off gluten and knowing that that is my problem.

Obviously finances are an issue so that is why I can't rush out to get all the possible testing for any possible problem.

I'm considering trying an Enterolab TTG test, while I'm waiting to retest the bloodwork in August or September. I do not know if that is able to conclusively rule out celiac or not.

Thank you for listening, and any thoughts are appreciated.

Only Ttg Igg Came Back Positive

07 June 2012 - 11:59 AM

Hello,
I am new here. Earlier this year I started having some digestive problems and when I read about celiac disease, I suspected it. After a great deal of research, I asked to be tested. Now before I got tested, I did a couple of gluten-free experiments. They were as follows (just in case it could have affected the testing, but I don't really think so).

1 week trying to be gluten-free
2 weeks back on gluten
2 weeks really gluten-free
4 weeks back on gluten

At the end of this I had my blood tests and here are the results:

DGP IGA was 5 (normal range 0-19)
DGP IGG was 3 (normal range 0-19)
TTG IGA was less than 2 (normal range 0-3)
TTG IGG was 11 (normal range 0-5) This is the only one that was positive.
Total IGA 188 (normal range 70-400)
EMA was negative

The doctor said that it is not a definitive diagnosis, but it points in the direction of celiac disease. She said I could go for the endoscopy, but realizes it would be quite expensive for me, so recommended I go gluten-free and see if that brings improvement.

I guess I would like to know if I have celiac, especially since I have two little girls and have some concerns about them too.

Does anyone know how specific the TTG IGG is for celiac disease, especially since I'm not IGA deficient? I really do not wish to pay the high cost for the endoscopy, especially since I am afraid I might not be a severe case and then it might come back normal anyway. I am wondering if I should tell my doctor I'd like to keep eating gluten a while longer so that I could repeat the blood tests in a few months.

Does anyone have any opinions on how likely (or unlikely) it is that I have celiac disease?

Thank you so much!
Amy