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6ft6

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6ft6 Newbie

Hello all,

I've been a lurker since my diagnoses 16 months ago. Was positive for blood tests and biopsy. I initially improved quickly, like many of you. But alas, the severity of the problem has greatly increased, to the point that when i get exposed (glutaminated) i usually don't know what it was. Things other people here use make me ill for two or more days. i'm fortunate to work for an accepting environment, but it has caused me severe difficulty at times.

Does anyone have a list of products that have been deemed safe, but have caused them an exposure. For me that is anything from Amy's Kitchen. But, frenches mustard, tropicana orange juice, and now on two separate occaisions, gluten free labled yoplait.

We have gone to extremes of kitchen cleanliness and habits. Changed to gluten free dog food, etc. I was out for two days this week from the yoplait incident and have a long recovery road back - big d for 48 hrs, sweats, and twitching. still have the sweats, but the twitching is subsiding. pain in my feet is back to tolerable.

I've gone to see a celiac specialist. they are referring to a nutritionist and ordered a colonoscopy. I have even had to have the pharmacist clean the sorting tray because i was getting a reaction from my BP pills.

How do you others cope with this. If i new i was taking a risk, i'd understand. but this comes out of nowhere and i'm donw for the count.

Any advice would be graciously appreciated.

Thanks,

Michael


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Swimmr Contributor

Before starting my elimination diet, I was eating yoplait EVERY day and never had any problems (to my knowledge). In other words, I didn't start my elimination diet with suspicion that it was the yoplait giving me issues.

I can't help, sorry...just figured I'd add that I am relatively ok with yoplait.

YoloGx Rookie

My boyfriend and I have had similar problems. How we resolved it is to make our food from scratch. It actually is a lot cheaper and in the long run, it takes less time since this way we don't get sick from cross contamination as well as other issues with mass produced food that might not be quite right for us.

In addition, we avoided all grains for 10 months following a kind of combined paleo or cave man diet modified by the 24 hour yogurt from the specific carbohydrate diet. This has helped our villi heal a great deal and it now appears we are ready to expand our diet a little though we are still sensitive to sugar and unfortunately honey and nuts as well as the nightshade family (potatoes/tomatoes/peppers).

I am now creating my own diet--which I call "back to basics"--and am doing so on a thread here. Basically its the same diet I have been eating except that now I have added brown rice (I cook myself). My diet is now less focused on meat however and more on vegetables with now the addition of the rice. Soon I plan to add in the occasional baked goods I also cook myself--made without sugar but instead using stevia for sweetener.

Both of us really love the 24 hour yogurt since we seem to have a certain amount of lactose intolerance. It also has a lot more pro-biotics in it than a regular 7 hour yogurt and thus it feels really good to eat it.

Hope this helps. I don't know if you are willing to make the effort we have had to, however even if you simply do things like eat more vegetables that will help. However I have seen it here over and over that if you are sensitive its best to not use processed, bleached etc. foods and get away from the sugar...

Bea

Ahorsesoul Enthusiast

It is common for dairy and soy to bother people with celiac disease until their intestines have healed.

With dairy it could be a lactose problem. Some people even after healing can not tolerate the lactose in dairy. Some people can eat cheese but not drink milk.

A food and 'how your feel' journal should help you see a pattern. It could be something that you least expect. Log everything that you eat or use on your body for the next two weeks. If you work with items that might contain gluten log them too. Could even be that you've kissed someone who just ate something with gluten. Some people find they do react from something so little.

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    • trents
    • Skg414228
      Correct. I’m doing both in the same go though. Thanks for clarifying before I confused someone. I’m doing a colonoscopy for something else and then they added the endoscopy after the test. 
    • trents
      It is a biopsy but it's not a colonoscopy, it's an endoscopy.
    • Skg414228
      Well I’m going on the gluten farewell tour so they are about to find out lol. I keep saying biopsy but yeah it’s a scope and stuff. I’m a dummy but luckily my doctor is not. 
    • trents
      The biopsy for celiac disease is done of the small bowel lining and in conjunction with an "upper GI" scoping called an endoscopy. A colonoscopy scopes the lower end of the intestines and can't reach up high enough to get to the small bowel. The endoscopy goes through the mouth, through the stomach and into the duodenum, which is at the upper end of the intestinal track. So, while they are scoping the duodenum, they take biopsies of the mucosal lining of that area to send off for microscopic analysis by a lab. If the damage to the mucosa is substantial, the doc doing the scoping can often see it during the scoping.
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