Glutened Again?!

[solarglobe]

Hi everyone,

Just need to vent. I got glutened -- again! I am so tired of going through this. I have been so careful about everything, but I still find new things that just get my whole gluten reaction going again. I discovered some "organic" sweeteners are grain-based! And what used to be a favorite treat -- a coconut bar, labeled gluten-free, uses rice syrup that is processed with barley! It's so aggravating! I find out everything the hard way, and my reaction is always D and bloating, not to mention truly evil gas. (sorry)

I'm tired of the D, the crankiness, the overwhelming fatigue, the hunger, the glazed look in everyone's eyes when I say gluten-free. My family has been kind and supportive -- but I know they've really had enough, and would prefer to run and hide at the mention of gluten-free.

I'm wondering if my body has a bunch of hidden gluten stuck in it from years gone by -- does that happen? Could this on-off glutening just be part of the healing process? When does it end?! It's annoying to have had a glimpse of feeling better -- in fact almost normal -- and then unintentionally get slammed again with gluten.

10 months (doing my best to be) gluten free.

[Juliebove]

Are you sure the rice syrup is made with barley? I think it all used to be, but now there are some that are gluten free.

[shirleyujest]

Hugs to you sweetie. (((((solarglobe))))) It's hard. It's okay to vent.

It sounds like you're sharing the kitchen with your family. Could there be appliances that are cc'd? You've got to play detective and you are. You are still on the learning curve.

I know what you mean, the "glazed look" in the eye. I'm eating out alot less for a while till I get situated. You may not be able to do that depending on lifestyle, if your friends eat out alot or workmates.

It's tough to lose your favorite coconut treat and sweetener. What about Stevia? I mostly use honey to sweeten, but sugar's okay too isn't it?

You'll figure it out, meantime vent away.

[sylviaann]

Hi everyone,

Just need to vent. I got glutened -- again! I am so tired of going through this. I have been so careful about everything, but I still find new things that just get my whole gluten reaction going again. I discovered some "organic" sweeteners are grain-based! And what used to be a favorite treat -- a coconut bar, labeled gluten-free, uses rice syrup that is processed with barley! It's so aggravating! I find out everything the hard way, and my reaction is always D and bloating, not to mention truly evil gas. (sorry)

I'm tired of the D, the crankiness, the overwhelming fatigue, the hunger, the glazed look in everyone's eyes when I say gluten-free. My family has been kind and supportive -- but I know they've really had enough, and would prefer to run and hide at the mention of gluten-free.

I'm wondering if my body has a bunch of hidden gluten stuck in it from years gone by -- does that happen? Could this on-off glutening just be part of the healing process? When does it end?! It's annoying to have had a glimpse of feeling better -- in fact almost normal -- and then unintentionally get slammed again with gluten.

10 months (doing my best to be) gluten free.

I am so sorry you were glutened. I have been going through the same roller coaster since last Fall and I finally reached the point where I stopped eating ALL processed food (even the "gluten-free products) for a few weeks. I found that my neurological problems disappeared after several days. You may want to think about trying this. If you see positive results, then you slowly add one new food item every week and keep a detailed food diary so you can detect any problem foods or Cross contamination. CC is very common in many processed food, especially if you are super sensitive. Also, be sure you examine all your medications, vitamins, nasal sprays and cosmetics (including, lotions, mouthwash, shampoo, etc.) for possible gluten. I believe that some peole actually become more sensitive to gluten and other foods after stopping gluten (I am one of them). I am curious about the coconut bar that made you sick...was it made by Larabar?? The reason I ask is because I thought this product made me ill last month.

Thanks a million,

Sylvia Ann

[OptimisticMom42]

I also had to stop eating all processed foods even the ones labeled gluten free. Out of pure frustration I limited myself to

homemade chicken or beef broth (meat, sea salt, pepper, onion cooked in the slow cooker all day)

lemon juice concentrate

cherry juice concentrate

pure maple syrup (used to sweeten the juice)

eggs

bananas

Using this as my safe base food list, I started bringing in other foods one at a time. I tested each food twice. Brought it in, took it out, brought it in again. If I reacted the same way twice it was out. I'm still testing some foods but have a pretty long list of single ingredient foods I know are safe for me now. I haven't been glutened in awhile. My family is OK with the whole "more freshly cooked meats, fruits and veggies" thing. It's easier for them than "no gluten".

Also I was able to distinguish between gluten and other reactions like.....oily foods like potato chips make me gassy but it has nothing to do with celiacs. Corn slows down my motility but is not really part of my celiacs either. Even my dog doesn't do well with corn in his food. Two weeks after my last two glutenings I experienced pain in my left ankle and left wrist. That was celiacs. The off brand chili spice that made me sick ...... that was celiacs. Gas after eating homemade baked beans was not celiacs. It was just the beans!

Hope you are feeling better soon

[sylviaann]

I also had to stop eating all processed foods even the ones labeled gluten free. Out of pure frustration I limited myself to

homemade chicken or beef broth (meat, sea salt, pepper, onion cooked in the slow cooker all day)

lemon juice concentrate

cherry juice concentrate

pure maple syrup (used to sweeten the juice)

eggs

bananas

Using this as my safe base food list, I started bringing in other foods one at a time. I tested each food twice. Brought it in, took it out, brought it in again. If I reacted the same way twice it was out. I'm still testing some foods but have a pretty long list of single ingredient foods I know are safe for me now. I haven't been glutened in awhile. My family is OK with the whole "more freshly cooked meats, fruits and veggies" thing. It's easier for them than "no gluten".

Also I was able to distinguish between gluten and other reactions like.....oily foods like potato chips make me gassy but it has nothing to do with celiacs. Corn slows down my motility but is not really part of my celiacs either. Even my dog doesn't do well with corn in his food. Two weeks after my last two glutenings I experienced pain in my left ankle and left wrist. That was celiacs. The off brand chili spice that made me sick ...... that was celiacs. Gas after eating homemade baked beans was not celiacs. It was just the beans!

Hope you are feeling better soon

I have been glutened by processed spices before. What spices do you safely use without suffering a reaction?? I am tired of using only real garlic. You sound like me..my wrist started hurting last weekend after eating organic chicken sausage. I suffered my gluten reaction (myoclonus and GI) for the next several mornings and nights. Corn bothers me too.

Thanks,

Sylviaann

[solarglobe]

Thank you for the great suggestions!

I just had in my mind that this would be so much easier -- just stop the wheat, and everything will be OK. And it seems I am getting more sensitive to foods as I go along. I definitely have an issue with too much corn or potatoes. And I think I'm headed to totally eliminating processed foods too.

I also think I'm still grieving over my previous lifestyle -- you know going out to eat whenever, wherever -- grabbing a sandwich for lunch, etc. I was at a hotel "free breakfast" buffet recently and there literally was not one single item I could eat. Boo hoo. It was a Larabar coconut bar too that got me.

So...I'll check out the CC issues, double check ingredient listings for cosmetics, and definitely try the elimination diet. That makes more sense to start from somewhere and slowly introduce foods again.

Thanks again everyone!