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Does it really matter if you have Celiac or "just" an intolerance?

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Old 01-14-2014, 05:46 PM   #11
ifthespiritmovesme
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Sorry you got so sick! Glad you know about the testing, I did not know about that until I went to a new gastro dr for testing. He said at that point there was no need to test me, if I was feeling better off gluten, just keep going with it. I was fine with that. When I get accidently glutened, it is not pretty! My husband is not GF, so there is gluten in our house. It is way too expensive for our house to be completely GF. I have RSD and many other issues, I cannot prepare meals very well. He can only use one hand/arm, so he doesn't cook either. We are VERY careful not to cross contaminate, his food is separate from mine, I have a separate toaster, colanders, etc.

As far as bath and beauty products go, I have searched online and found a lot of info. There are some lists online that lists names of ingredients that you need to also look for...I will look for those for you. The Body Shop has a GF list that they will email you if you request it. If there is not a store near you, they do have a website. The shampoo I use is DermOrganic, it is labeled as GF. You can find it online or at Ulta. I found a huge bottle of it at TJMaxx for $19.99 and the first bottle I bought at Ulta was $18.99 for 1/3 the size! If you are near a Whole Foods, they have a lot of GF products in their cosmetic dept - lotions, creams, shampoos, hair styling products and the staff there is so helpful! I use either Peter Rabbit or California Baby body lotions (baby lotions) because they are more gentle and I am also allergic to shea, as well as some other ingredients. I find them at Whole Foods and Target.

I do not wear make up any longer, too hard to apply with RSD in my hands. It amazes me that gluten can be in everything though!!
Wow, Nanc!

You sure have a tough row to hoe...my heart goes out for you. What is RSD?
I have a lot of sensitivites - chemicals, metals, band-aid sticky - even (now don't laugh at this....) the thread-like stitches they use to sew you up after surgery!!! My early surgical scars are WIDE! I have to have staples. Completely screwed up my Breast Lift!

I'll be near Mom's Organic Market (MOM's) in a couple weeks. I'm kinda stuck in the boondocks here - not a whole lot of the specialty places nearby. Also I don't have a car, and public transportation here is lousy. I'll be sure and check out all their B & B stuff. Glad I'll be there right after I get my disability check! GF ain't cheap....

After doing some reading here, I realize I have to get new pots and pans, too!! I often wonder if I have been exposed unknowingly, because I'll have "effects". I've probably been poisoning myself every time I cook! I just bought a new cutting board, so...

Thanks so much for all of you help!!!
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Old 01-14-2014, 08:27 PM   #12
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Wow, Nanc!

You sure have a tough row to hoe...my heart goes out for you. What is RSD?
I have a lot of sensitivites - chemicals, metals, band-aid sticky - even (now don't laugh at this....) the thread-like stitches they use to sew you up after surgery!!! My early surgical scars are WIDE! I have to have staples. Completely screwed up my Breast Lift!

I'll be near Mom's Organic Market (MOM's) in a couple weeks. I'm kinda stuck in the boondocks here - not a whole lot of the specialty places nearby. Also I don't have a car, and public transportation here is lousy. I'll be sure and check out all their B & B stuff. Glad I'll be there right after I get my disability check! GF ain't cheap....

After doing some reading here, I realize I have to get new pots and pans, too!! I often wonder if I have been exposed unknowingly, because I'll have "effects". I've probably been poisoning myself every time I cook! I just bought a new cutting board, so...

Thanks so much for all of you help!!!
RSD is Reflex Sympathetic Dystrophy, now known as Complex Regional Pain Syndrome (CRPS), it is a chronic neurological syndrome characterized by: severe burning pain; pathological changes in bone and skin; excessive sweating;
tissue swelling; extreme sensitivity to touch. RSD/CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. According to the McGill Pain Index, RSD is the most painful chronic disease known.

I have had RSD for 23 years now. It began in my face and now I have it throughout most of my body. I am unable to work now There is a RSD/CRPS forum here that I normally post on, but happened to see your post

Not laughing at you about the stitches....I have weird reactions to weird stuff too, glad I am not alone. I had my two spinal cord stimulators removed Thursday and my husband has to change my bandages daily...it is torture! I have all these red, irritated spots from the adhesive...so aggravating.

You very well could be exposing yourself to gluten unknowingly. I did not go as far as getting new pots and pans when I went GF. I scrubbed them very well. But if it is something porous, it can hold the gluten...like baking stones, seasoned iron skillets, colanders. I have baking stones for GF and separate ones for my husband and they are stored separately. It is good that you got a new cutting board!!

You are right, GF ain't cheap at all! Since you do not have a car and live in the boondocks, online ordering might be better! I order from Amazon all the time Hopefully you can find some stuff at MOM's!

Good luck!
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Old 01-15-2014, 10:19 AM   #13
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Default I am a Celiac and have read some of your questions and concerns...

Hello, to those of you who are Celiac and/or GF intolerant,

I was diagnosed as having Celiac Disease almost 3 years ago...which was what they called "latent" since my many tests during other problems never showed that in my blood work or even a biopsy given of my liver, or the biopsy of my gall bladder that was removed.

Needless to say, the medical testing for us is still in the process of "getting a better control". The important part is how "you" are feeling, your own personal assessment between you and your Dr. Everyone who is a Celiac does not have the same symptoms...there are over 100 types of symptoms in the real world. And of course there is the GF intolerance, which is more typically symptomatic in its own right.

I am a member of a great Celiac site which has so much information concerning this disease. It is called Celiac.com and has a great deal of inforamtion especially for those first few months of going GF.

Remember that no question or problem you are having is ever considered "insignificant"....this is something I am learning and dealing with my Dr's on a better communication.

Blessings in your desire to feel better and live well. Joanie
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Old 01-23-2014, 04:49 PM   #14
ifthespiritmovesme
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Sorry you got so sick! Glad you know about the testing, I did not know about that until I went to a new gastro dr for testing. He said at that point there was no need to test me, if I was feeling better off gluten, just keep going with it. I was fine with that. When I get accidently glutened, it is not pretty! My husband is not GF, so there is gluten in our house. It is way too expensive for our house to be completely GF. I have RSD and many other issues, I cannot prepare meals very well. He can only use one hand/arm, so he doesn't cook either. We are VERY careful not to cross contaminate, his food is separate from mine, I have a separate toaster, colanders, etc.

As far as bath and beauty products go, I have searched online and found a lot of info. There are some lists online that lists names of ingredients that you need to also look for...I will look for those for you. The Body Shop has a GF list that they will email you if you request it. If there is not a store near you, they do have a website. The shampoo I use is DermOrganic, it is labeled as GF. You can find it online or at Ulta. I found a huge bottle of it at TJMaxx for $19.99 and the first bottle I bought at Ulta was $18.99 for 1/3 the size! If you are near a Whole Foods, they have a lot of GF products in their cosmetic dept - lotions, creams, shampoos, hair styling products and the staff there is so helpful! I use either Peter Rabbit or California Baby body lotions (baby lotions) because they are more gentle and I am also allergic to shea, as well as some other ingredients. I find them at Whole Foods and Target.

I do not wear make up any longer, too hard to apply with RSD in my hands. It amazes me that gluten can be in everything though!!
Sorry I've been off here for a bit. There's a Mom's Organic Market near my daughter. When I go up there next time, I'll take a good look at their health and beauty stuff.

I am pretty careful about what I eat, and, yes! it's ridiculous all what contains gluten! Mostly I eat meat (local, organic and not grain-fed) and veggies and fruit, nuts, seeds, etc. I try to include flax, chia and hemp in most things I prepare. I have GF bread in the freezer, but don't eat much of it.

I would be in bad shape if I was allergic to shea! My son-in-law is from Ghana, where they make it, and they often give me a few pounds of it. I make my soap with it, and use it as a body moisturizer. My skin is so dry, it drinks it right up.
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Old 01-23-2014, 05:38 PM   #15
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Sorry I've been off here for a bit. There's a Mom's Organic Market near my daughter. When I go up there next time, I'll take a good look at their health and beauty stuff.

I am pretty careful about what I eat, and, yes! it's ridiculous all what contains gluten! Mostly I eat meat (local, organic and not grain-fed) and veggies and fruit, nuts, seeds, etc. I try to include flax, chia and hemp in most things I prepare. I have GF bread in the freezer, but don't eat much of it.

I would be in bad shape if I was allergic to shea! My son-in-law is from Ghana, where they make it, and they often give me a few pounds of it. I make my soap with it, and use it as a body moisturizer. My skin is so dry, it drinks it right up.
Hey there! Hopefully you can find something at MOM's!

It is good you are careful about what you eat and that you can eat veggies, fruits, nuts, etc. Unfortunately, I cannot eat much in the way of fruits and veggies and no nuts. I have interstitial cystitis (painful bladder syndrome) and cannot eat that stuff. So, in addition to avoiding gluten, I have a huge list of foods to avoid because of IC...too complicated.

It is awesome that you get all that shea and can make your own soap! I was at a women's show and there was a booth there that had pure shea, I broke out from it It makes me mad because it is in so much stuff!
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Old 01-23-2014, 07:19 PM   #16
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Hey there! Hopefully you can find something at MOM's!

It is good you are careful about what you eat and that you can eat veggies, fruits, nuts, etc. Unfortunately, I cannot eat much in the way of fruits and veggies and no nuts. I have interstitial cystitis (painful bladder syndrome) and cannot eat that stuff. So, in addition to avoiding gluten, I have a huge list of foods to avoid because of IC...too complicated.

It is awesome that you get all that shea and can make your own soap! I was at a women's show and there was a booth there that had pure shea, I broke out from it It makes me mad because it is in so much stuff!
Geeze, Nanc - How in the world can you get all your nutrients?? This is awful- foods making us sick. I am now researching foods to avoid if you have thyroid problems (I do). Crap, crap - more goodies I have to give up.
Well, hopefully they will not make me give up chocolate!!! I could live on that..
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Old 01-23-2014, 08:12 PM   #17
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Geeze, Nanc - How in the world can you get all your nutrients?? This is awful- foods making us sick. I am now researching foods to avoid if you have thyroid problems (I do). Crap, crap - more goodies I have to give up.
Well, hopefully they will not make me give up chocolate!!! I could live on that..
That is a good question...I am so deficient in potassium, vitamins D & B12. I take D3 drops and get monthly B12 injections. Because most food makes me sick, potatoes were like my safe food. Well, I have to avoid them now because of my bladder. Also can't have chocolate (argh!) and tea...I love iced tea Hopefully you can keep your chocolate!!
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Old 01-23-2014, 11:03 PM   #18
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That is a good question...I am so deficient in potassium, vitamins D & B12. I take D3 drops and get monthly B12 injections. Because most food makes me sick, potatoes were like my safe food. Well, I have to avoid them now because of my bladder. Also can't have chocolate (argh!) and tea...I love iced tea Hopefully you can keep your chocolate!!
Good Lord! You can't eat anything "healthy" for you. Will this ever get better for you? I sure hope so. I was deficient in B12...got shots for several months, then oral. I went gluten free and now B12 is soaring. That was part of this puzzle for me. Now tackling my whacked thyroid. I don't think chocolate affects that..hehe.

Seriously, though - I can't imagine going through all you do and maintaining my sanity. God, what a pity party I would have - constantly! People didn't used to have all these complicated allergy/immune problems. I think modern life and all we are exposed to is making people (and animals, and bugs....) sick. Not to mention GMO foods. I have so many chemical and metal sensitivities. If I smell certain odors, my windpipe starts closing up.

Eliminating gluten has drastically improved my health, but my thyroid is not right. I will be tested for antibodies in a week or so, and hopefully begin a better medication therapy. I just raised heck in a letter to the hospital director where I get my care, as I have had thyroid problems for years, but the minimal testing they do shows fine. In August (after suffering for 40+ years) they tested Free T4 and Free T3. Both are in the basement. What do you know......I do have a problem.....

I'll keep you in my prayers, maybe they'll help get you feeling better. I sure hope so. Take good care of you.
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Old 01-23-2014, 11:39 PM   #19
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Good Lord! You can't eat anything "healthy" for you. Will this ever get better for you? I sure hope so. I was deficient in B12...got shots for several months, then oral. I went gluten free and now B12 is soaring. That was part of this puzzle for me. Now tackling my whacked thyroid. I don't think chocolate affects that..hehe.

Seriously, though - I can't imagine going through all you do and maintaining my sanity. God, what a pity party I would have - constantly! People didn't used to have all these complicated allergy/immune problems. I think modern life and all we are exposed to is making people (and animals, and bugs....) sick. Not to mention GMO foods. I have so many chemical and metal sensitivities. If I smell certain odors, my windpipe starts closing up.

Eliminating gluten has drastically improved my health, but my thyroid is not right. I will be tested for antibodies in a week or so, and hopefully begin a better medication therapy. I just raised heck in a letter to the hospital director where I get my care, as I have had thyroid problems for years, but the minimal testing they do shows fine. In August (after suffering for 40+ years) they tested Free T4 and Free T3. Both are in the basement. What do you know......I do have a problem.....

I'll keep you in my prayers, maybe they'll help get you feeling better. I sure hope so. Take good care of you.
Well, once I eliminate all the high oxalate foods and the "avoid" foods on the IC diet for a while, I can reintroduce foods one and a time. I have to figure out which are my trigger foods and which do not trigger pain. I am just startting the process. It is very complicated because some foods that are safe on the IC diet contain high oxalates...they contradict each other. So, hopefully eliminating everything will not be permanent. I have gastroparesis (slow digestion) which is common in folks with RSD. I cannot tolerate some of the safe foods on both low oxalate and IC diet lists....like certain apples and bananas. SOOOO FRUSTRATING!! I am allergic to pork, shellfish and some fishes (my throat closes). Because of the pork allergy, there are so many meds and supplements that I cannot take (no gelatin). My mom says that I get all the allergies from dad's side of the family. He and his mom had so many allergies...crazy! It does amaze me how people nowadays have so many issues. It is truly insane!

Did you get tested for the metal and chemical sensitivities? I had allergy testing numerous times with allergists, but they only test environmental and foods. The dermatologist tested some other things and found an ingredient in creams or cosmetics that I reacted to (urea). I think I have other sensitivities/allergies but don't know how to find out.

Elliminating gluten definitely has improved things for me too. How do I stay sane?? I have no idea...lol. My husband is really a gift. He helps me make it thru everyday. I had to stop working in Dec 2012, I receive disability now. It was the hardest thing for me to do, but I just couldn't handle it any longer. I had to stop and take care of myself for a change. Always put myself last.

Glad you fought about the testing. Wow, it is unbeleivable to be having problems that long and not get tested properly. I never heard of free T3 & T4, had to look it up. Glad you don't have to give up chocolate...whew! Hope you can get a handle on your thyroid soon!

Thanks for the prayers, will take all I can get Sending some back your way. Take care, Nanc
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Old 01-24-2014, 10:33 PM   #20
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Well, once I eliminate all the high oxalate foods and the "avoid" foods on the IC diet for a while, I can reintroduce foods one and a time. I have to figure out which are my trigger foods and which do not trigger pain. I am just startting the process. It is very complicated because some foods that are safe on the IC diet contain high oxalates...they contradict each other. So, hopefully eliminating everything will not be permanent. I have gastroparesis (slow digestion) which is common in folks with RSD. I cannot tolerate some of the safe foods on both low oxalate and IC diet lists....like certain apples and bananas. SOOOO FRUSTRATING!! I am allergic to pork, shellfish and some fishes (my throat closes). Because of the pork allergy, there are so many meds and supplements that I cannot take (no gelatin). My mom says that I get all the allergies from dad's side of the family. He and his mom had so many allergies...crazy! It does amaze me how people nowadays have so many issues. It is truly insane!

Did you get tested for the metal and chemical sensitivities? I had allergy testing numerous times with allergists, but they only test environmental and foods. The dermatologist tested some other things and found an ingredient in creams or cosmetics that I reacted to (urea). I think I have other sensitivities/allergies but don't know how to find out.

Elliminating gluten definitely has improved things for me too. How do I stay sane?? I have no idea...lol. My husband is really a gift. He helps me make it thru everyday. I had to stop working in Dec 2012, I receive disability now. It was the hardest thing for me to do, but I just couldn't handle it any longer. I had to stop and take care of myself for a change. Always put myself last.

Glad you fought about the testing. Wow, it is unbeleivable to be having problems that long and not get tested properly. I never heard of free T3 & T4, had to look it up. Glad you don't have to give up chocolate...whew! Hope you can get a handle on your thyroid soon!

Thanks for the prayers, will take all I can get Sending some back your way. Take care, Nanc
I'm glad you will be able to start adding things back in to your food list. That is just WAY too complicated for me! I haven't investigated if any other foods bother me. I would say that nothing seems to bother me, but I didn't know gluten bothered me till I gave it up and noticed the HUGE difference it made in my energy, sleep, pain and stiffness. I may have to give up some foods for my thyroid - we'll see after I get all these tests run.

I'm a veteran and get care at the VA. They won't do allergy testing.

I am having a fight with them about getting the tests I need for my thyroid. If you don't fit precisely into one of their normal little boxes, they don't want to help you. In the past 6 months, I have learned so much about it, and unfortunately, I now know more about my problem than my Endo. doc does! That's sad.....

Well, Girl, I gotta go to bed....Hope you have a good night.
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