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- trents replied to Mary Miller A's topic in Coping with Celiac Disease1I am having a very hard time with foods calling themselves "Gluten Free" but in reading ingredients are not safe, cross contamination
Welcome to the forum, @Mary Miller A! May I ask, you say you are new to this online community but how long ago were you diagnosed as having celiac disease? You seem to have a good awareness of cross contamination issues but have you considered cross reactivity issues? Some of your cross contamination concerns should be addressed by FDA disclosure...- cross contamination
- gluten free foods
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- Tracey Thomas replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms21New and Frustrated
So I’m back. Sorry for delay this has been a very expensive exhausting experience that I feel is still not resolved. So the reason for the B-12 issue is. Doctor tested me for alpha gal my test came back positive but numbers weren’t high enough for doctors. Meaning allergist., family doctor to think I should be having this kind of reaction. So there for the... -
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- Mary Miller A posted a topic in Coping with Celiac Disease1I am having a very hard time with foods calling themselves "Gluten Free" but in reading ingredients are not safe, cross contamination
I am new here. I am really totally frustrated by trying to be as gluten free as possible, only to find out that products being called "gluten free" have serious ingredients that need clarification (like Methocellulose) which can be derived from wheat shafts, "yeast extract" which can be grown on wheat, rye or barley, and issues with companies that claim...- cross contamination
- gluten free foods
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Welcome to the forum, @Mary Miller A! May I ask, you say you are new to this online community but how long ago were you diagnosed as having celiac disease? You seem to have a good awareness of cross contamination issues but have you considered cross reactivity issues? Some of your cross contamination concerns should be addressed by FDA disclosure regulations having been put in place in recent years that require disclosure of the source of ingredients such as "modified food starch" and "natural flavorings" when they are made from any of the nine FDA recognized major allergens, wheat being one of the nine. -
By Tracey Thomas · Posted
So I’m back. Sorry for delay this has been a very expensive exhausting experience that I feel is still not resolved. So the reason for the B-12 issue is. Doctor tested me for alpha gal my test came back positive but numbers weren’t high enough for doctors. Meaning allergist., family doctor to think I should be having this kind of reaction. So there for the B-12 vitamins I was taking was a gummie form. So st this time thinking it’s the alpha gal I had to stop everything that was gelatin, anything that couldn’t swim or fly. The ingredients in things. So I’ve done this I’ve cleaned my system and things were getting better. I’m still scared from the hives that broke out all over the upper part of my body from trunk up. Scaring is on stomach and back area in some places. So any how I had allergy test done doctor said I wasn’t allergic to wheat that I was fine to eat gluten. So I still avoided gluten just to make sure. Well around Christmas I thought maybe I could try a little dessert so I did and I could tell over time it was making me tired but it was so good. So time went on and I tried natures own butter bread as toast with my eggs. That was ok couldn’t really tell anything so I thought darn I might be ok. So I’m eating regular instant oatmeal packs the cinnamon spice. Soon as I finished it my stomach was killing me. The day before I had the same thing but didn’t notice this like this time I ate it. But I did notice a burning itchy area on my left shoulder like collar bone area. Well it’s still there . So it’s same kind of spot that I broke out in prior at the beginning of all this. Now I’m confused my test for celiac which was blood test was negative. My allergist told me he believed I had a major health problem going on that could either be a form of cancer, rheumatoid arthritis, or my hypothyroidism was messed up. So had blood test done for rheumatoid arthritis that came back negative. My thyroid numbers were good I’m on levothyroxine for that. And nothing else was done so left it at alpha gal. Could this still be celiac. -
By Mary Miller A · Posted
I am new here. I am really totally frustrated by trying to be as gluten free as possible, only to find out that products being called "gluten free" have serious ingredients that need clarification (like Methocellulose) which can be derived from wheat shafts, "yeast extract" which can be grown on wheat, rye or barley, and issues with companies that claim they are making "wheat free bread in a facility that can cross contaminate because they mostly make wheat bread. I remember about a month ago reading from the Celiac's Foundation a paper regarding how it is virtually impossible to be "gluten free" (https://celiac.org/gluten-impossible-to-avoid-for-most-people-study-shows/). And here I am again, with a basketball sized stomach (even when laying down), and frustrated beyond belief. How do we do this? How do we fix this? Is it even possible, to fix our diet to be without any possible small grain of gluten in our system? It's hard emotionally, (not to mention physically; the gassiness, the bloating, and certainly back door incontinence, as well as gastric problems and lack of nutrition, etc. How do we fare when we don't even have doctors to advice us in small communities where "celiac's doesn't exist." I am tired. Anyone else? -
Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive. I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.
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I will have that info soon but it was a laundry list of a test and 9 viles. ok so there were some days she was gluten she barely ate because of the reactions. I told her 3 weeks of atleast 10g’s a day and no gluten-free days. Thanks so much for your help! I didn’t know my suggestion for gluten-free days would have hurt her. I will come back with the list to make sure the req was proper!!
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