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Well thought out words, well seasoned with salt. Thank you very much!
The presentation of the posters here to portray me as simply being wrong or reacting psychosomatically did NOT sit well with me. I emailed my question to six celiac centers and/or physicians. The response I'm receiving does NOT agree with how the posters here have presented the situation. I'm not a 'told you so' kind of person, so I will simply recommend that anyone experiencing the same thing that I have should also consult with a professional and not a forum. Simply google "celiac research facilities physicians" and start emailing.
A typical reaction to gluten, I think, is shared by most celiacs. In short: flu-like sickness followed by complete emptying of GI tract followed by lethargy. Do the posters here believe that extreme reaction can be caused "psychosomatically"?
I can assuredly vouch that my level of being gluten free is extreme. I do not share utensils, cooking equipment, dishes, make everything home made, eat like a tree-hugger.
If I were to listen to these posters' advice and be in the same room every time grains containing gluten are boiled, I would most-assuredly be sick the next day with flu-like reaction, emptying of GI, lethargy. I will not intentionally do that to myself since I HATE being sick. Say what you want, but in this forum of super-sensitivity, I will continue to avoid vapors from boiling grains that contain gluten.
I would like to suggest that posters and readers alike consider the difference between vapors from boiling grains versus distillation. In a complete distillation process gluten proteins are completely removed as I'm sure most are well aware. However, when grains are boiling in water, gluten particles do rise with vapor. When my husband is boiling grains for his beer, he is not distilling, he is cooking. Another fact that most celiacs are aware of, most beer contains gluten. Beer is not distilled. I strongly advise that evidence be posted here that vapors are gluten free (outside of the distillation process.) I'm not psycho.
Interesting how all of your strong opinions label my reactions as psychological. Actually, it's quite insulting. This brings back memories when some friends and family thought if I simply ate more gluten my body would get used to it because there's no such thing as celiac.
Thank you all for your replies. I truly did not anticipate being sick from those incidents - I actually anticipated nothing at all - so it was not psychosomatic. It was several times of truly not being able to figure out why I had gotten ill that lead me to the proper conclusion. For those of you not aware, the syrup used in beer making is highly condensed malt, and yes I had directly inhaled the vapors. The large volume of boiling pasta at the firehall created alot of vapors as well. Due to my level of sensitivity, I am extraordinarily careful. I have reached the proper conclusion and am glad to hear that none of you have gone through the frustration of discovering this surprising way of being glutened.
My husband took up a new hobby, brewing beer. After he made it two different times, the next day I got sick. (I'm always sick the next day when I'm glutened.) He didn't believe me when I blamed it on the boiling brew. I volunteered to help at the fire department for their chicken bbq, and I was working in the kitchen with the boiling macaroni. Sure enough, next day I got sick. Even when he tried to make it when I wasn't home for a third time, I still got sick the next day. This tells me I've moved into the super sensitive arena. But I have to believe that's because I've done such a good job of avoiding gluten, that when I get a little bit, I'm not used to it and react stronger. So be aware of vapors!!!
Thanks for your reply. What you said makes sense. I've done so much reading online and I can't believe this is one thing that I haven't read about. I think it should be discussed more because the doctor and I were wondering if I had refractory celiac. I now have the peace of mind that my villi have healed and the GI trouble I'm having is probably from some accidental cross contamination. No one prepared me for this possibility.
I thought it might be helpful to share with others how after I went gluten free 1 1/2 years ago, my 'stomach' symptoms worsened. I felt full so quickly, would get painful attacks that would lead to vomiting, and I couldn't handle foods with much fat nor fibrous foods. 1 year ago I was diagnosed with gastroparesis. 10 months ago I was diagnosed with Hashimoto's, as well as having a positive blood test for Limited Scleroderma. Over the last 10 months the scleroderma doctor has decided that I had a false positive for it. In talking with my new GI specialist, he told me that Hashimoto's can cause gastroparesis. He also said that they are finding that celiac can affect the stomach. So in my case, the culprit to my gastroparesis could be either or both.
I have a personal theory as well. I think I tested positive for scleroderma because I believe I was developing it. I've read that untreated celiac can lead to scleroderma. I had most all of the symptoms for scleroderma except skin involvement. After alot of deducing, the scleroderma doctor and the GI specialist said we could blame most of my symptoms on either Hashimoto's or celiac. The only symptom that no one had much of an explanation for was telangiectasia on my face, hands, upper body, and splinter hemorrhages on my nails. I haven't had splinter hemorrhages in a few months, and I haven't gotten any new telangiectasia. Therefore, I have to think that going gluten free and getting my thyroid managed has helped me in many ways unknown.
My advice to anyone with celiac who cheats is to please realize that it is of GRAVE danger to their health.
That's me too! Either the celiac or the Hashimoto's has given me gastroparesis which is also unpleasant, but can be managed with diet and such. I bake every week. Here's my all purpose flour:
1 cup tapioca flour/starch
3/4 cup sweet rice flour (or more potato/tapioca)
1 1/2 cup sorghum
1 cup millet
1/2 c brown rice flour (or more sorghum/millet)
1 1/4 cup potato starch
5 tsps xanthan or guar gum
Diane, only once did I intentionally eat a small pretzel to see what would happen and that was after my biopsy came back that my villi were healed. I wanted to know what to expect when I was accidentally glutened. My sister in law accidentally glutened me 2 weeks ago and I'm still feeling the effects.
Marilyn, thank you for the illustration, it makes sense. When they did my enteroscopy about 1 1/2 months ago, he could see widespread gastropathy in the small intestine and stomach. He said that was evidence that there had been inflammation and it was healing. He "thought" he saw active flattened villi, but in essence, it was evidence of where there once had been inflammation in the stomach and flattened villi in the small intestine, but it's now healed.
It confused me why it started as a relatively silent disease, now I get terrible cramping and diarrhea when I accidentally get glutened.
Your post made me laugh. I went through a lot in 2011 with 3 different auto-immune diseases and I felt like I could diagnose anyone! Especially after watching every single episode of Mystery Diagnosis! LOL!
Was that your complete test? If so, from my understanding, milk contains both lactose and casein, so a more accurate test is to consume something with only casein and no lactose, such as hard cheeses like swiss and cheddar. If a cheese nutrition label says "zero" sugars, that means there are no lactose sugars.
I wondered the same thing, and still do. Dairy gives me GI trouble as well as pimples. I can handle hard cheese in small doses and not get GI trouble, however I will still get a few pimples. I truly don't know what that means for me, but I'm leaning toward sensitivity toward both lactose and casein.