Gluten Free And Still Miserable

[Gentleheart]

Hello Everyone.

I'm in my 50's and just got back a saliva test from Diagnos Tech in March and a comprehensive stool test from Enterolab in July. Both strongly indicate celiac so I'm accepting it as a done deal. The Enterolab test says I have one gluten intolerant gene (DQ1) and one celiac gene (DQ3), mild malabsorption, some intestinal damage from the looks of the transglutaminase numbers and a definite casein intolerance. The Enterolab test showed all of that in spite of the fact that I had already gone off all gluten and dairy and several other allergy foods for 2 months and in spite of the fact that the Diagnos Tech saliva test which I did 2 months prior also said my total salivary SIgA was even borderline low. The saliva test also said I am intolerant of eggs. After all that, I've just assumed I probably have soy problems too. I took a big IgG ELISA blood test from York and found a few other allergies as well.

I have been in the health field all of my adult life. I began courses to get my Naturopath degree and I would love to finish them, but everything has been on hold for nearly 8 years now because I've been so sick. As an adult, I am not classic celiac. Hindsight tells me that I probably was as a child with LOTS of indigestion, hives, ear infections, anxiety, itching skin and such. But most of my physical symptoms as an adult began 8 years ago with a GIANT panic attack from which I have never recovered. I have been suffering with panic (with agoraphobia), anxiety, unresponsive obesity, sweats, mild neuropathy, constipation, depression, insomnia and bloating for the full 8 years. Lately I have added VERY DISTRESSING ectopic heartbeats (flutters) and unrelenting vertigo. Those two symptoms are so scary that I have found myself making "bargains" with God that if I could just have those go away, I would graciously accept all the others. I have been checked over from top to bottom in emergency rooms and doctor's offices and spent thousands of dollars trying to figure out what was wrong with me. I even explored the psychology route in case it was all in my head. While being an avowed health food nut for 30 years with no dietary or lifestyle bad habits (honest!), I am the sickest person I know. Something has to be wrong. Well now I have probably found it.

I have been reading on several message boards to try to bring myself up to speed. But here are my current questions for some of you veterans:

1. If I have been gluten, dairy and egg free for 2+ months now, is it normal to still feel so badly? My dizziness and heart flutters are relentless and I just feel generally anxious, wobbly and lousy all the time. My depression isn't as much psychological as it is just being TIRED OF THIS!

2. I realize that a regular medical doctor would likely want me to do a gluten challenge and then do bloodwork and a scope test. I really DO NOT want to do that. Am I going to find it hard to live a celiac lifestyle without a "proper" diagnosis? Or are there doctors out there who will accept the stool test?

3. Scientifically, if a gluten and dairy intolerant person eats those things heavily her entire life and then suddenly stops, is there a detoxification process that must occur and is the length of time determined by how long the celiac went undiagnosed? Since I have not had diarrhea or vomiting to rid myself of the offending gluten and dairy during my life as many celiacs do, but instead have been bound up with constipation and obesity, is there actually gluten or casein residue that the body must deal with? Or is that not the way it works? I understand the autoimmune mechanism with the damaging of tissue and inflammation. I'm just trying to figure out why I am not responding to a gluten and dairy free diet with any improved well being at all. I'm actually worse and I'm going on 3 months now.

NOTE: I couldn't stand it any longer and called my gp today to tell him about my tests. He's a really nice guy and I was hoping he'd help me on my terms. But he is recommending a blood test even though I have been off gluten for 3 months. He says that it won't matter. He is also recommending a colonoscopy. Although I really respect my doctor, it doesn't sound like he fully understands how this works. Not sure what to do now. If I didn't feel so badly, I'd just do this alone and not deal with the medical establishment. I just don't know if I'm brave enough. These symptoms are scary.

I really appreciate the wonderful service provided here. I've never participated in a message board before. So if I've put this in the wrong place or gone on too long, please forgive my ignorance of procedures. I'll learn eventually. Thanks so much!

[queenofhearts]

Hello Everyone.

I'm in my 50's and just got back a saliva test from Diagnos Tech in March and a comprehensive stool test from Enterolab in July. Both strongly indicate celiac so I'm accepting it as a done deal. The Enterolab test says I have one gluten intolerant gene (DQ1) and one celiac gene (DQ3), mild malabsorption, some intestinal damage from the looks of the transglutaminase numbers and a definite casein intolerance. The Enterolab test showed all of that in spite of the fact that I had already gone off all gluten and dairy and several other allergy foods for 2 months and in spite of the fact that the Diagnos Tech saliva test which I did 2 months prior also said my total salivary SIgA was even borderline low. The saliva test also said I am intolerant of eggs. After all that, I've just assumed I probably have soy problems too. I took a big IgG ELISA blood test from York and found a few other allergies as well.

I have been in the health field all of my adult life. I began courses to get my Naturopath degree and I would love to finish them, but everything has been on hold for nearly 8 years now because I've been so sick. As an adult, I am not classic celiac. Hindsight tells me that I probably was as a child with LOTS of indigestion, hives, ear infections, anxiety, itching skin and such. But most of my physical symptoms as an adult began 8 years ago with a GIANT panic attack from which I have never recovered. I have been suffering with panic (with agoraphobia), anxiety, unresponsive obesity, sweats, mild neuropathy, constipation, depression, insomnia and bloating for the full 8 years. Lately I have added VERY DISTRESSING ectopic heartbeats (flutters) and unrelenting vertigo. Those two symptoms are so scary that I have found myself making "bargains" with God that if I could just have those go away, I would graciously accept all the others. I have been checked over from top to bottom in emergency rooms and doctor's offices and spent thousands of dollars trying to figure out what was wrong with me. I even explored the psychology route in case it was all in my head. While being an avowed health food nut for 30 years with no dietary or lifestyle bad habits (honest!), I am the sickest person I know. Something has to be wrong. Well now I have probably found it.

I have been reading on several message boards to try to bring myself up to speed. But here are my current questions for some of you veterans:

1. If I have been gluten, dairy and egg free for 2+ months now, is it normal to still feel so badly? My dizziness and heart flutters are relentless and I just feel generally anxious, wobbly and lousy all the time. My depression isn't as much psychological as it is just being TIRED OF THIS!

2. I realize that a regular medical doctor would likely want me to do a gluten challenge and then do bloodwork and a scope test. I really DO NOT want to do that. Am I going to find it hard to live a celiac lifestyle without a "proper" diagnosis? Or are there doctors out there who will accept the stool test?

3. Scientifically, if a gluten and dairy intolerant person eats those things heavily her entire life and then suddenly stops, is there a detoxification process that must occur and is the length of time determined by how long the celiac went undiagnosed? Since I have not had diarrhea or vomiting to rid myself of the offending gluten and dairy during my life as many celiacs do, but instead have been bound up with constipation and obesity, is there actually gluten or casein residue that the body must deal with? Or is that not the way it works? I understand the autoimmune mechanism with the damaging of tissue and inflammation. I'm just trying to figure out why I am not responding to a gluten and dairy free diet with any improved well being at all. I'm actually worse and I'm going on 3 months now.

NOTE: I couldn't stand it any longer and called my gp today to tell him about my tests. He's a really nice guy and I was hoping he'd help me on my terms. But he is recommending a blood test even though I have been off gluten for 3 months. He says that it won't matter. He is also recommending a colonoscopy. Although I really respect my doctor, it doesn't sound like he fully understands how this works. Not sure what to do now. If I didn't feel so badly, I'd just do this alone and not deal with the medical establishment. I just don't know if I'm brave enough. These symptoms are scary.

I really appreciate the wonderful service provided here. I've never participated in a message board before. So if I've put this in the wrong place or gone on too long, please forgive my ignorance of procedures. I'll learn eventually. Thanks so much!

Hi, Blanchemae,

Welcome to the board! I predict you will find it as helpful as I have. These folks know way more than the doctors! And provide great moral support. It's perfectly appropriate to ask ANY question (there's even a chat place for non-celiac stuff) & there is almost always someone who knows the answer.

I'm sort of in the same boat you are, diagnosed at 50 & still symptomatic. But I was diagnosed by biopsy, which was very useful in my case. But I had only been gluten-free for a week when I had the endoscopy. (Colonoscopy is not for this-- other problems maybe?)

I recently read a post on the Celiac Listserv (I think that's where it was) that said that those diagnosed over 30 had not fully healed after 2 years on the diet. Others on this board have said that it took them a year or more for full recovery. I think we're going to have to be patient.

Also, are you being careful about cross-contamination, meds, cosmetics, &c.? There are a lot of details to keep track of with Celiac. Have you seen Nini's newbie kit yet?

Again, welcome, & let me know if there's anything else I can help with.

Leah

[Gentleheart]

Hi, Blanchemae,

Welcome to the board! I predict you will find it as helpful as I have. These folks know way more than the doctors! And provide great moral support. It's perfectly appropriate to ask ANY question (there's even a chat place for non-celiac stuff) & there is almost always someone who knows the answer.

I'm sort of in the same boat you are, diagnosed at 50 & still symptomatic. But I was diagnosed by biopsy, which was very useful in my case. But I had only been gluten-free for a week when I had the endoscopy. (Colonoscopy is not for this-- other problems maybe?)

I recently read a post on the Celiac Listserv (I think that's where it was) that said that those diagnosed over 30 had not fully healed after 2 years on the diet. Others on this board have said that it took them a year or more for full recovery. I think we're going to have to be patient.

Also, are you being careful about cross-contamination, meds, cosmetics, &c.? There are a lot of details to keep track of with Celiac. Have you seen Nini's newbie kit yet?

Again, welcome, & let me know if there's anything else I can help with.

Leah

Thanks so much Leah! I have actually been very careful. I've called all my supplement companies, many food companies and checked every label. I agree that there's a lot to learn. But I can't see that I'm getting any inadvertant gluten or dairy anywhere. I am actually very patient when it comes to getting well. But I was hoping to get somebody out there who had an explanation for the dizziness and heart flutters. If I were at least fairly sure I wasn't going to DIE while I waited to get unglutenized, then I'd be fine!

[Sarah8793]

Blanchemae,

I haven't been formally diagnosed as celiac yet, am awaiting enterolab results. BUT I am diagnosed with hypoglycemia. My main symptom of hypo is dizziness. I also occasionally get heart flutters, but since going off caffeine, artificial sweetners and msg, they have almost completely disappeared. Have you thought about having a glucose tolerance test?

Sarah

[queenofhearts]

Thanks so much Leah! I have actually been very careful. I've called all my supplement companies, many food companies and checked every label. I agree that there's a lot to learn. But I can't see that I'm getting any inadvertant gluten or dairy anywhere. I am actually very patient when it comes to getting well. But I was hoping to get somebody out there who had an explanation for the dizziness and heart flutters. If I were at least fairly sure I wasn't going to DIE while I waited to get unglutenized, then I'd be fine!

I've had both of these symptoms, though not severely, & they often appear on this board. Are you anemic? Do you have low blood pressure? Both can result from Celiac malabsorption & cause these symptoms. It just takes time to heal enough to get those nutrients where they are supposed to go. My doc said to expect about 3 months before I really felt any different. Some on this board have gone much longer, but did get well eventually!

Good for you for being so careful! Few doctors give the full scoop & I think many folks waste a lot of time getting inadvertantly glutened.

Leah

[ravenwoodglass]

Thanks so much Leah! I have actually been very careful. I've called all my supplement companies, many food companies and checked every label. I agree that there's a lot to learn. But I can't see that I'm getting any inadvertant gluten or dairy anywhere. I am actually very patient when it comes to getting well. But I was hoping to get somebody out there who had an explanation for the dizziness and heart flutters. If I were at least fairly sure I wasn't going to DIE while I waited to get unglutenized, then I'd be fine!

Hi, welcome to the boards. In addition to removing gluten sources from the above named stuff please be sure to also check your shampoos, toiletries, soaps, lotions and makeup. I had horrible gluten ataxia, the dizziness and feeling of being off balance was awful. In my case it was about 6 months gluten-free before these went away. It can take a long time to heal and when glutened my nerve problems, the ataxia and parathesias are one of the first symptoms I see along with depression. My GI problems went away fairly soon, I was lucky cause I had been very ill with daily explosive D for almost 15 years. The other stuff took much longer. One thing I found helpful for the ataxia was sublingual B12, you may want to give that a try while you are healing. Hang in there things will get better, hopefully.

[Rachel--24]

Hi...I'll try to anser some of your questions as best I can.

First I just want to point out that DQ3 is not a Celiac gene but a sensitivity gene instead. I have DQ1 and DQ3 also and they are both sensitivity genes. The Celiac genes are DQ2 and DQ8. A very small percentage of diagnosed Celiacs do not have either DQ2 or DQ8 so they have not yet determined all of the genes associated with Celiac. I believe the Celiacs who dont carry DQ2 or DQ8 all have DQ1 in common so if they were to add another gene to the "known" celiac genes it would probably be DQ1.

1. If I have been gluten, dairy and egg free for 2+ months now, is it normal to still feel so badly? My dizziness and heart flutters are relentless and I just feel generally anxious, wobbly and lousy all the time. My depression isn't as much psychological as it is just being TIRED OF THIS!

It can take up to 2 years for some people to feel well again. I've been on the diet over 1 year now and have many food intolerances and I'm still struggling. I cant eat any processed foods and although I'm doing WAY better than I was before I went gluten-free....I'm still nowhere near 100%. So to answer your question yes, its normal to still feel lousy after only 2 months. Also if you've been sick for many years recovery is going to take some time.

2. I realize that a regular medical doctor would likely want me to do a gluten challenge and then do bloodwork and a scope test. I really DO NOT want to do that. Am I going to find it hard to live a celiac lifestyle without a "proper" diagnosis? Or are there doctors out there who will accept the stool test?

Do you need an "official" diagnosis? I dont have one and it doesnt change anything as far as my diet goes. I had negative bloodwork and biopsies for Celiac...although both tests were taken after I had been on the diet so not really accurate. The doctors did not recommend a gluten challenge in my case and if they had I wouldnt have done it anyways. Both GI's I saw pretty much said the same thing...We cant know if its Celiac or not but it doesnt matter because if gluten makes you sick you should not eat it and the treatment is the same whether I have a piece of paper calling it "Celiac" or if I walk out of the room just knowing that I have a gluten intolerance. The point is either way I have to be on the diet. I ruled out Celiac myself based on having DQ1 and DQ3 and no Celiac gene so I have a non-celiac gluten sensitivity. I see a naturopath who is very knowledgeable re: gluten intolerance. He really doesnt differenciate between Celiac and gluten intolerance....its all the same to him. I've never had any doctor.... alternative or conventional tell me I should eat gluten again or that I need to do a challenge for a diagnosis. My naturopath believes the stool test is accurate and the mainstream docs dont go for it because for one, they dont know anything about it, and two, they only diagnose based on bloodwork and biopsy results...some will give a diagnosis based on results of a challenge but I'm sure most wont give the stool test any validity at all.

3. Scientifically, if a gluten and dairy intolerant person eats those things heavily her entire life and then suddenly stops, is there a detoxification process that must occur and is the length of time determined by how long the celiac went undiagnosed?

Alot of people go through a withdrawl but I dont know if it is related to how many years a person was symptomatic. It seems like initial withdrawl symptoms usually last about a week....maybe two. After that it just takes time to heal. There may also be other food intolerances that you arent aware of. Were you ever tested for parasites or bacteria infections? Thats something my naturopath says they find in almost all people with gluten intolerance and the infections can interfere with the healing process.

[Gentleheart]

Hi, welcome to the boards. In addition to removing gluten sources from the above named stuff please be sure to also check your shampoos, toiletries, soaps, lotions and makeup. I had horrible gluten ataxia, the dizziness and feeling of being off balance was awful. In my case it was about 6 months gluten-free before these went away. It can take a long time to heal and when glutened my nerve problems, the ataxia and parathesias are one of the first symptoms I see along with depression. My GI problems went away fairly soon, I was lucky cause I had been very ill with daily explosive D for almost 15 years. The other stuff took much longer. One thing I found helpful for the ataxia was sublingual B12, you may want to give that a try while you are healing. Hang in there things will get better, hopefully.

Hi Ravenwoodglass,

Thanks for the advice and encouragement. I've been watching the cosmetics pretty closely just in case. I've particularly quit wearing lipstick until I have a chance to find a gluten free one. You're not the first one to suggest B12 for my symptoms. I'll try it! I do take a very expensive allergy Multiple Vitamin/mineral by Thorne with B12 in it, but I doubt that it is enough and it isn't sublingual.

Blanchemae,

I haven't been formally diagnosed as celiac yet, am awaiting enterolab results. BUT I am diagnosed with hypoglycemia. My main symptom of hypo is dizziness. I also occasionally get heart flutters, but since going off caffeine, artificial sweetners and msg, they have almost completely disappeared. Have you thought about having a glucose tolerance test?

Sarah

Hi Sarah,

I don't use any caffeine, artificial sweeteners or msg. I have already sensed I was really sensitive to them and have avoided them for years. I love chocolate, but finally reluctantly had to give it up too. It was just too obvious that it was bothering me. Bummer! I haven't had a glucose tolerance test recently. My husband is a diabetic so we have a glucose meter here. I have tested as low as 62 on it, but am usually around 85. It could be an issue. I'll consider it. Thanks!

[Gentleheart]

Hi...I'll try to anser some of your questions as best I can.

First I just want to point out that DQ3 is not a Celiac gene but a sensitivity gene instead. I have DQ1 and DQ3 also and they are both sensitivity genes. The Celiac genes are DQ2 and DQ8. A very small percentage of diagnosed Celiacs do not have either DQ2 or DQ8 so they have not yet determined all of the genes associated with Celiac. I believe the Celiacs who dont carry DQ2 or DQ8 all have DQ1 in common so if they were to add another gene to the "known" celiac genes it would probably be DQ1.

It can take up to 2 years for some people to feel well again. I've been on the diet over 1 year now and have many food intolerances and I'm still struggling. I cant eat any processed foods and although I'm doing WAY better than I was before I went gluten-free....I'm still nowhere near 100%. So to answer your question yes, its normal to still feel lousy after only 2 months. Also if you've been sick for many years recovery is going to take some time.

Do you need an "official" diagnosis? I dont have one and it doesnt change anything as far as my diet goes. I had negative bloodwork and biopsies for Celiac...although both tests were taken after I had been on the diet so not really accurate. The doctors did not recommend a gluten challenge in my case and if they had I wouldnt have done it anyways. Both GI's I saw pretty much said the same thing...We cant know if its Celiac or not but it doesnt matter because if gluten makes you sick you should not eat it and the treatment is the same whether I have a piece of paper calling it "Celiac" or if I walk out of the room just knowing that I have a gluten intolerance. The point is either way I have to be on the diet. I ruled out Celiac myself based on having DQ1 and DQ3 and no Celiac gene so I have a non-celiac gluten sensitivity. I see a naturopath who is very knowledgeable re: gluten intolerance. He really doesnt differenciate between Celiac and gluten intolerance....its all the same to him. I've never had any doctor.... alternative or conventional tell me I should eat gluten again or that I need to do a challenge for a diagnosis. My naturopath believes the stool test is accurate and the mainstream docs dont go for it because for one, they dont know anything about it, and two, they only diagnose based on bloodwork and biopsy results...some will give a diagnosis based on results of a challenge but I'm sure most wont give the stool test any validity at all.

Alot of people go through a withdrawl but I dont know if it is related to how many years a person was symptomatic. It seems like initial withdrawl symptoms usually last about a week....maybe two. After that it just takes time to heal. There may also be other food intolerances that you arent aware of. Were you ever tested for parasites or bacteria infections? Thats something my naturopath says they find in almost all people with gluten intolerance and the infections can interfere with the healing process.

Hi Rachel,

Enterolab said that I definitely have one celiac gene and one gluten intolerant gene. I probably just have the names wrong. Sorry. I agree that most medical doctors aren't up to speed on this thing. It's just that when you are dealing with additional scary symptoms, it's hard to go it alone. It is so tempting to try to get professional help. I have dealt with many naturopaths. They definitely can be better. Some anyway. Unfortunately. the ones I have used have missed my celiac diagnosis completely. Now that I have concrete tests, maybe we can get somewhere.

What method do you all use to be tested for parasites?

Thanks!

[Felidae]

I am in my early thirties and have been gluten-free for just over one year. Initially I felt great until dairy started to bother me so I eliminated it at about four months. Now, after one year I am feeling pretty much like a normal person would feel. I'm not really sure because I've been sick for well over a decade. Give it time and you will see improvements.

When I think back to before being gluten-free, I was sick daily with D and I haven't had anything near to that since going gluten-free. I also had migraines, heart palpitations, hair falling out, gum recession and these have all pretty much subsided from going gluten-free.

[Lymetoo]

Have you been tested for Lyme disease? Any possibility you could have it? The usual test given by hospitals and labs such as Quest or LabCorp won't cut the mustard on Lyme testing. Check this site www.igenex.com and Open Original Shared Link for more information. I'll be happy to send you more information if you want to explore this.

Lyme causes depression OFTEN, as well as heart problems, panic attacks, anxiety....the list is endless.

I had the same saliva test you had and I didn't pay close enough attention to it!! This was several years ago and now I'm finally realizing I have another problem....ugh!

In addition to removing gluten sources from the above named stuff please be sure to also check your shampoos, toiletries, soaps, lotions and makeup.

Oh, you've got to be kidding!! I guess I have ALOT of work to do!!!!!!! Can anyone tell me which supplement companies are the most likely to be gluten-free?? Also... What percentage of you folks have the casein sensitivity? And which test is that through?

thanks

[Gentleheart]

I am in my early thirties and have been gluten-free for just over one year. Initially I felt great until dairy started to bother me so I eliminated it at about four months. Now, after one year I am feeling pretty much like a normal person would feel. I'm not really sure because I've been sick for well over a decade. Give it time and you will see improvements.

When I think back to before being gluten-free, I was sick daily with D and I haven't had anything near to that since going gluten-free. I also had migraines, heart palpitations, hair falling out, gum recession and these have all pretty much subsided from going gluten-free.

Thanks Felidae! After reading a lot of these message boards lately, I'm beginning to see that most people don't get over this thing very fast. I'll hang in there. It must be really wonderful to feel normal. I'm not sure I ever have either. Been sick a L O N G time.

[Lymetoo]

OOPS....sorry I messed that up!!

[queenofhearts]

Thanks Felidae! After reading a lot of these message boards lately, I'm beginning to see that most people don't get over this thing very fast. I'll hang in there. It must be really wonderful to feel normal. I'm not sure I ever have either. Been sick a L O N G time.

I too feel like I never really knew what it was to feel well. I've had gastro symptoms & weakness since childhood, recurrent depression, nightmares & anemia since adolescence, & all manner of ailments as I reached middle age. I just thought that was what my life would always be like, so the Celiac diagnosis is almost a dream come true. I still sometimes can't quite believe I will really recover from alll this just by avoiding gluten! But this board helps me believe...

Leah

[Gentleheart]

Have you been tested for Lyme disease? Any possibility you could have it? The usual test given by hospitals and labs such as Quest or LabCorp won't cut the mustard on Lyme testing. Check this site www.igenex.com and Open Original Shared Link for more information. I'll be happy to send you more information if you want to explore this.

Lyme causes depression OFTEN, as well as heart problems, panic attacks, anxiety....the list is endless.

I had the same saliva test you had and I didn't pay close enough attention to it!! This was several years ago and now I'm finally realizing I have another problem....ugh!

Oh, you've got to be kidding!! I guess I have ALOT of work to do!!!!!!! Can anyone tell me which supplement companies are the most likely to be gluten-free?? Also... What percentage of you folks have the casein sensitivity? And which test is that through?

thanks

Never thought my symptoms matched Lyme. I don't really have any joint or muscle pain. Don't recall any bites that were suspect either. But you never know.

I have made my own soap for years. That's one way I avoid that problem anyway. I like Burt's Bees, but I don't know about everything they make. I'm obviously still learning.

[queenofhearts]

Can anyone tell me which supplement companies are the most likely to be gluten-free?? Also... What percentage of you folks have the casein sensitivity? And which test is that through?

thanks

There are lots of safe supplements out there; I use Nature Made mostly, they assured me all of theirs were safe except for the chewables.

Don't know about the casein, sorry.

Leah

[Rachel--24]

What method do you all use to be tested for parasites?

I had a stool test. Its done over 4 days. Different samples each day. I didnt have any parasites but had a bacteria overgrowth and candida overgrowth. I took antibiotics for the bacteria and was suppossed to retake the stool test but havent got around to it yet....still need to do that. Nobody could ever find a cause for my ongoing symptoms....I wasnt getting better even on a gluten-free, dairy free, corn free, egg free, soy free diet. I was eating everything organic but still having major set-backs. All my tests for everything imagineable looked good...I recently figured out I'm reacting to MSG. Not just MSG in soups and processed foods (I dont even eat anything processed) but all MSG. Its hidden in alot of stuff.....even organic produce is sprayed with a growth enhancer that is 30% MSG. I finally figured out why I react to everything and I'm just doing everything I can to get better. I never avoided msg in the past because I didnt even know what it was until about a month ago.

[queenofhearts]

I have made my own soap for years. That's one way I avoid that problem anyway. I like Burt's Bees, but I don't know about everything they make. I'm obviously still learning.

I posted a list of Burts Bees recently. If you search Burts Bees Leah, it will probably come up.

Leah

[Lymetoo]

Thanks. I buy relatively high quality supplements, but I need to begin calling the companies.

[queenofhearts]

Found the Burt's Bees list but it took some looking so I've copied it:

Appropriate List For Gluten Restricted Patients

Products NOT containing wheat, Oat, Rye & Barley derived ingredients

Updated: March 24, 2006

BABY BEE

BABY BEE DUSTING POWDER

BABY BEE CR�ˆME

BABY BEE LOTION �€“ DAIRY

BABY BEE BUTTERMILK BATH �€“ DAIRY

BABY BEE DIAPER OINTMENT �€“ NUT

HAND & FACE & BODY

GARDEN TOMATO TONER

WILD LETTUCE TONER

TOMATO COLOGNE

CARROT NUTRITIVE BODY LOTION

MILK & HONEY LOTION�€“ DAIRY

PEPPERMINT SHOWER SOAP �€“ NUT

LAVENDER SOAP

TOMATO SOAP

CARROT SOAP

CITRUS SPICE SOAP

WILD LETTUCE COMPLEXION SOAP

CUCUMBER/CHAM COMPLEXION MIST

LAVENDER COMPLEXION MIST

GRAPEFRUIT COMPLEXION MIST

CARROT SEED COMPLEXION MIST

LEMON POPPY SEED

BEESWAX MOIST DAY CREME

BEESWAX MOIST NIGHT CR�ˆME �€“ NUT

GINGER CITRUS BODY WASH

ALMOND MILK HAND CR�ˆME �€“ NUT

BANANA HAND CR�ˆME �€“ NUT

LEMON BUTTER CUTICLE CR�ˆME -NUT

HAND SALVE - NUT

ORAL CARE

LAVENDER TOOTHPASTE

CINNAMINT TOOTHPASTE

CHILDREN�€™S TOOTHPASTE

PEPPERMINT BREATH FRESHENER

LIP & COSMETIC

LIP BALM TIN �€“ NUT

LIP BALM TUBE

HONEY LIP BALM �€“ NUT

LIPSHIMMER �€“ ALL SHADES

LIPSTICKS �€“ ALL SHADES

LIFEGUARDS CHOICE LIP BALM

LIP GLOSS �€“ ALL SHADES

EYESHADOW- ALL SHADES

TINTED MOISTURIZER �€“ ALL SHADES

BLUSHING CR�ˆME �€“ ALL SHADES

CONCEALING CR�ˆME �€“ ALL SHADES

POWDERED FACIAL TISSUES

EYE & BROW LINERS

VANISHING POWDER

HEALTHY TREATMENT

HT EVENING PRIMROSE CR�ˆME �€“ NUT

HT MARSHMALLOW CR�ˆME

HT PORE REFINING MASK

HT TONER

HT SHEA BUTTER HAND REPAIR �€“ NUT

HT ROYAL JELLY EYE CR�ˆME

HT PARSLEY BLEMISH STICK

HAIR CARE

HERBAL TREATMENT SHAMPOO

SUPER SHINY GRAPEFRUIT SHAMPOO

SUPER SHINY GRAPEFRUIT CONDITIONER

MISC

HERBAL BLEMISH STICK

HERBAL DEODORANT

INSECT REPELLENT

THEARPEUTIC BATH CRYSTALS

HERBAL DEFENSE OINTMENT �€“ NUT

HERBAL MILK BATH �€“ NUT, DAIRY

Sarah Milkovich

Retail Web Coordinator

Burt's Bees, Inc.

info@burtsbees.com

[Gentleheart]

There are lots of safe supplements out there; I use Nature Made mostly, they assured me all of theirs were safe except for the chewables.

Don't know about the casein, sorry.

Leah

Enterolab will do a casein stool test. DiagnosTech can do a saliva test for casein as well. I use Thorne supplements. They are specifically made for allergy people and very reliable. I also got great information when I checked with Pioneer Supplements. Since I am sensitive to gluten, corn, soy, eggs and dairy, it gets really hard to find supplements without any of those. But Thorne's and Pioneer seem to be OK according to my investigations so far.

[Lymetoo]

Thanks!! Does EVERYBODY on the gluten-free diet have to be careful of the lotions, lipsticks, etc??

[Gentleheart]

Thanks!! Does EVERYBODY on the gluten-free diet have to be careful of the lotions, lipsticks, etc??

I was told definitely lipstick because most people eventually "eat" it off. I was also told that some people unexplainably even react to cosmetics on their skin too. Whole gluten molecules supposedly can't go through skin, but the experiences of some people contradict that.

[evie]

I have made my own soap for years. That's one way I avoid that problem anyway. I like Burt's Bees, but I don't know about everything they make. I'm obviously still learning.

As many of us are blanchemae. About the heart palpitations: those lasted a few months for me, kind of scary & glad they are gone now, think they are just somethig many of us get when we are quite sick/ celiac disease. also the chills and the sweats + the burning of the skin on feet and arms, dizziness too. My problems have been around for 17 to 18 years but just finally got diagnosed in 2/06, we just don't find the right Dr. to get us diagnosed so we could get better & be healthier.

I have only been on this board since April but have learned so much from some very knowledgeable people here!!! Stay/ us and you will be helped (help is here )!! evie

[Gentleheart]

As many of us are blanchemae. About the heart palpitations: those lasted a few months for me, kind of scary & glad they are gone now, think they are just somethig many of us get when we are quite sick/ celiac disease. also the chills and the sweats + the burning of the skin on feet and arms, dizziness too. My problems have been around for 17 to 18 years but just finally got diagnosed in 2/06, we just don't find the right Dr. to get us diagnosed so we could get better & be healthier.

I have only been on this board since April but have learned so much from some very knowledgeable people here!!! Stay/ us and you will be helped (help is here )!! evie

Thanks for the encouragement, Evie! I admit that talking to all of you is very comforting. I actually had gluten and dairy allergy symptoms as a baby, adolescent and teenager. The symptoms changed some with each decade, but were always there, nevertheless. But because people didn't know much about it in those "ancient" days , I was never diagnosed. I love investigating and learning new things. If I felt better, all this interesting research and information could almost be fun.