Trying To Be 100% gluten-free In A Glutenous World

[AsillyYak]

HI, I have been gluten free for 9 months now. I have taken full-ownership of this new life style and try to follow the diet to a "T". But I've been sick at least 20 x since then.

Why do I keep getting sick? My Dr. said I may have trouble b/c my blood tested so high for Celiacs. For example, I was at a community event this weekend that served fresh baked bread (a whole table full). I did NOT eat the bread but was surrounded by bread-eaters who did. I drank 2 cups of tea and chatted with the others. I made sure to wash my hands frequently. Is it possible that I was contaminated from the flour dust? Can it get in my mouth by talking or drinking?

Why am I so sensitive? Will it ever get any easier, or will I always be this sensitive? Do I need to look into other conditions/allergies?

[glutenfreeinminnesota]

HI, I have been gluten free for 9 months now. I have taken full-ownership of this new life style and try to follow the diet to a "T". But I've been sick at least 20 x since then.

Why do I keep getting sick? My Dr. said I may have trouble b/c my blood tested so high for Celiacs. For example, I was at a community event this weekend that served fresh baked bread (a whole table full). I did NOT eat the bread but was surrounded by bread-eaters who did. I drank 2 cups of tea and chatted with the others. I made sure to wash my hands frequently. Is it possible that I was contaminated from the flour dust? Can it get in my mouth by talking or drinking?

Why am I so sensitive? Will it ever get any easier, or will I always be this sensitive? Do I need to look into other conditions/allergies?

Hey! I have been gluten free for 10 months, so I thought I would let you know what is happening to me!! Pretty similar. I have felt "glutened" quite a few times since starting this whole new life style. I try to be so careful...but somehow it seems to happen occasionally. I have been told to get tested, or do the elimination diet for other intolerances/allergies. I have tried eating dairy free/casein free/nut free/gluten free (of course)...and I still seem to feel the same. No matter what, I KNOW I feel WAY better then prior to going on this diet. I think...maybe...and I don't know for sure...but maybe we are more sensitive in the beginning since we are still healing? Maybe when you were talking with friends and drinking tea...a friend got crumbs in your drink? You never know I guess. I am a professional house cleaner and clean up all kinds of gluteny crumbs and what-not on a daily basis...and I even clean toaster trays ...it has never made me sick. If I was you I would try to see if there is some other intolerance that affects you? Otherwise...just keep being as careful as you can! Good luck.

[Cypressmyst]

I am this sensitive as well. Got glutened from beer breath. I so wish I was kidding but I'm not.

I'll be going out to see Dr. Vikki and Rick Petersen at the Health Now clinic in California come Thanksgiving time and phone consultations on this issue have concluded that it is something that will pass once we get the gut back in order.

Gluten free is only the first step in some cases, the imbalance that it caused in the flora and fauna of the intestinal tract needs to be corrected and other toxins (heavy metals and the like) flushed from the body before true healing can begin.

For example, I have an overgrowth of Candida Yeast that I am currently working on starving out by not eating any sugars. Candida can mirror many gluten symptoms as well so when I eat a lot of sugar I sometimes notice a light headedness and itchyness.

So you may want to look into secondary issues in the gut. Getting off gluten is a big piece of the puzzle but it isn't the only piece.

Once the gut is put back in balance many food intolerances clear up. I am gluten/casein free right now but may be able to eat cheese again in the future. Gluten never again though. BUT I shouldn't be this sensitive for the rest of my life.

I will definitely keep you posted as to my progress.

It is a mad world out there.

[Gemini]

HI, I have been gluten free for 9 months now. I have taken full-ownership of this new life style and try to follow the diet to a "T". But I've been sick at least 20 x since then.

Why do I keep getting sick? My Dr. said I may have trouble b/c my blood tested so high for Celiacs. For example, I was at a community event this weekend that served fresh baked bread (a whole table full). I did NOT eat the bread but was surrounded by bread-eaters who did. I drank 2 cups of tea and chatted with the others. I made sure to wash my hands frequently. Is it possible that I was contaminated from the flour dust? Can it get in my mouth by talking or drinking?

Why am I so sensitive? Will it ever get any easier, or will I always be this sensitive? Do I need to look into other conditions/allergies?

Many times when people do not do as well on the gluten-free diet as they should is because of the very high incidence of other food intolerances. It's not always about gluten. I also tested in the ridiculous range as far as my blood work was concerned but I am doing fantastic now, after 5 1/2 years gluten-free. It may take longer than you think to recover but you should be noticing positive changes by now and not getting sick all the time. I rarely got sick at all after going gluten-free but I also knew a lot about food as I had studied nutrition when I was younger.

It would be highly unlikely that you would be CC'd by bread sitting out on a table...even a lot of bread. Once cooked, the crumbs aren't quite as air born like flour dust that is seen in bakeries, unless someone breaks open a roll and the crumbs fly into your food, which you in turn would ingest. I can be around bread and people eating bread, as long as I am not eating next to them, and never have a problem and I am a very, very sensitive Celiac. I do not particularly like the smell of gluten bread but that's not the same as being glutened by some.

I really think you may have other food intolerances and that's why you keep getting sick. I also had to go very dairy light myself as I cannot tolerate drinking milk or eating ice cream. Milk in my tea is fine but no more than that or I get sick. You may want to keep a food diary so you can pinpoint exactly what makes you feel ill OR get tested for other allergies/intolerances. Hang in there because it will get better but sometimes it takes a little longer than you would like.

[lucia]

I react to corn as strongly as if I was glutened.

[T.H.]

Well, re: the the community event?

Possible gluten issues I can think of off hand.

1. the tea. Since you have been following the diet so carefully, I'm assuming you checked the tea ingredients for barley and such, yes? But if the tea was processed on a machine that also processed teas with barley, that could be a CC source. Or if it's not a gluten free facility, that could also cause contamination with the tea. Did anyone else handle the tea bag but yourself? Perhaps someone touched the tea bag with gluteny hands?

2. It might be uncommon, but someone walking near the tea having a few invisible bits of gluten fall off the hand and into your tea...could happen. Unlikely, but still possible.

3. Was the cup disposable or not? If not disposable, maybe it wasn't washed enough to rid the cup of a previous gluten beverage. Or the dishwasher soap had gluten and wasn't rinsed off enough. Or if it's glass, if it had any cracks or parts where gluten could have absorbed into, it could release into your tea. Same goes for whatever the water was boiled in for the tea (if hot tea). Or if it was iced tea, there could be issues with the water used for the ice being contaminted by gluten hands.

4. You washed your hands a lot, but is there any chance you could have touched your lips just once without washing? Another possibility.

5. Oh, and yes, you can get some in your mouth near people eating it. It's more likely with flour, but if something was crusty so that crumbs would flake into the air a little as people took a bite, it's possible. Or that some of these tiny crumbs might have gotten in your tea.

Honestly, lots and lots of ways you could have gotten gluten.

As to why you are sensitive, I've heard some theories.

1. getting more than one gene might make one more sensitive to gluten (I've read hypothesized in one study, but can't find the link at the moment)

2. If you've had it a long time. I have read many people here who were very sensitive and seemed to have the disease for many, many years before being diagnosed.

3. And...who knows, huh? :-P Probably best to just accept we are and go with it, I sometimes think. I'm very sensitive myself, so I can honestly say I sympathize in the worst way.

>>> Will it ever get any easier, or will I always be this sensitive? Do I need to look into other conditions/allergies?

I think that first, I would go SUPER gluten free. And if that doesn't do it, I'd say yeah, start looking at other conditions or allergies. But I'd avoid the teensiest, tiniest risks of gluten first, to make sure.

After reading on this forum about some sensitive people's reactions to gluten free products, and a few reactions from myself and my daughter, I delved into the research like crazy. A lot of things that are on the 'safe' list for celiacs are, really, not safe for ALL of us.

1. Some of us react to lower levels of gluten. So 'gluten free' products sometimes have too much gluten for us and we have to ditch them and make our own products before we can heal.

2. gluten free grains and flours that are 'naturally gluten free' have been found to be contaminated quite often (In the US, legally, a company can say gluten free if the grains are that way naturally, even if the processing contaminates them, sigh). So you might be getting glutened by the flours that are supposed to make you better. You can google and find home based gluten test kits to order to test some of your products and flours and see how much gluten they have (they test down to 10ppm).

3. Some low percentage of celiacs seem to react to gluten-free oats or quinoa just like they react to wheat, barely, and rye.

4. Many foods that are listed as safe, like meats or fruit, can actually be a gluten contamination risk, especially in delis and supermarkets, where they tend to have sausage, coated meats, or other meats with gluten that are sliced and prepared right next to each other. The fruit can often be cut next to gluten ingredients in the stores, too. Or someone with gluten-y hands may have handled it and you aren't able to wash it all off. Fish is often processed in factories that use marinades or soy sauce with gluten and might contaminate the fish. Basically, if a food is touched by anything other than you and your hand? ALWAYS a tiny chance of contamination. Usually it's a small risk, infinitesimal sometimes, but if you are reacting like mad, you might want to avoid as much as you can and slowly add stuff back in as you see what works.

Also, sometimes, a product may be fine once, and then have a tiny bit more gluten the next time and make you react.

And truly, I speak from my own experience on this one. I'm really, really sensitive to gluten. My father, my daughter, and my brother can all eat gluten-free foods that make me sick as a dog. I've reacted to nuts that were processed in a facility with wheat. I've reacted to an oil that was processed on the same machine as wheat germ oil (spectrum brand oils). I've touched a table and accidentally touched my lips and gotten glutened. I've had many gluten-free flours that kicked my butt.

But if I am super, super careful, I don't react. For me, I've had to avoid almost anything processed, even oils and most flours and grains (many of them have now given me a gluten reaction). I try to only get things from completely gluten free facilities if I have to (and even this I'm looking into. Not sure how much some of them test, and if they get contaminated before the factory gets it, I'm not sure how that will be detected, or not). I buy meat that is pre-sealed and was packaged in facilities that ONLY make that meat and don't add anything - like bison meat. I get my own plate, my own saucepans, my own cutting board. I'm in a gluten free household, but I still need my own stuff or sometimes my kids' gluten-free foods can gluten me. I have started an herb and vegetable garden and fruit trees in my backyard so I know the food is gluten free.

It is, frankly, a heck of a lot of work and a pain in the butt. I have to cook in a very different manner, too. But it does seem to stave off the gluten reaction. However, on top of that...I did have other food issues, yes. I thought for a long time that some foods were bothering me that I have since learned are actually not. The gluten reaction is noticeably different from my reactions to other foods, so being totally gluten free helped me eventually figure out when it was gluten and when it was something else.

Wishing you good luck in figuring this out!

[celiacsher]

I react to corn as strongly as if I was glutened.

I react to eggs really bad. BUT I do eat some gluten as it does not bother me too much. My doc said its okay to eat a little and all my biopsys have been okay.

[celiacsher]

I react to corn as strongly as if I was glutened.

I was diagnosed in 2005 so my body has had years to recover and now I feel great except if i eat eggs