Just Want My Life Back

[Marlene]

I can handle being on the gluten/casein free diet. I can't handle feeling sick anymore. My digestive system is completely haywire since having my gall bladder removed this past spring. I was diagnosed gluten/casein intolerant about 2 months later. I just want to feel better. I feel sick if I don't eat, I feel sick if I do eat. I was doing better for a couple of months but now I often have pain under my ribs -- exactly the same pain that made the specialist think my gall bladder had to come out. There is no bile there to digest my food when I need it and then when I don't, bile comes rushing into my intestines and gives me diarrhea. I had a bad morning today, got a speeding ticket, had to drop something off at my daughter's school, was driving there feeling nauseas and like I wouldn't make it to the bathroom. Went to a coffee shop to use the bathroom but the bathroom was right where everyone was standing in line and I wanted more privacy. My daughter was complaining last night about having to walk somewhere because it would take her 20 minutes. I just flipped and started crying -- I wish I could walk anywhere (even if it took me an hour) without feeling sick. I am not even looking forward to Christmas. Somedays I just wish I had never been born.

I am taking digestive enzymes, L-glutamine, probiotics (these all do help to a certain extent), am extremely vigilant about my diet and try to eat only healthy, whole foods as much as possible. I just wish I could find something to regulate the flow of bile. I know it can take a few years to heal but I am so sick and tired of being sick and tired.

I know this sounds like a lot of rambling -- sorry. I am just at the end of it and I don't know how I can keep going on. Well, I feel like I am going to start crying again but I am at work so we can't have that, now can we? I better end this note here. Thanks for letting me vent.

Marlene

[mroper]

Sorry you are feeling so bad. It will get better. Hang in there!

[mn farm gal]

Marlene I am sorry you feel so horrible today. I remember feeling this way before I was gluten free I had several issuse going on at one time. I did invest in a Natral pathic doctor, worth the money. She found so many areas to work on and gave me the worst ones to work on first and started feeling better. The small changes I could see daily or weekly but after a few months (3-4) I was really a different person and still working on some area.

Good luck to you.

[Electra]

Marlene,

I am right there with you. My kids have been fighting like crazy and I just found out I have Celiac. My daughter has it too and I'm so sick right now that I can barely stand at the end of the day. No one seems to understand that If I cut out Gluten it doesn't just go away UG!! It takes months sometimes years to feel better. I have the same pain under my ribs almost constantly. I wake up with paralizing back pain and my leg is cold and numb all the time and lately my shin has been aching like no ache I have ever had before. I feel like I've run a 1000 mile marathon and didn't eat or drink along the way UG!! I'm trying to get through all of this yet no one seems to understand. I got sent to the hospital a couple weeks ago for Celiac and everyone still seems to think that it's ok for me to be able to have Gluten in my house and to handle it and feed it to my kids. Man I'm just so overwhelmed right now I could pass out. I live on pain pills and I can't wait for the day when the the gluten is finally out of my diet completely!!

Good Luck and I really hope that both of us heal sooner then later!!

[Jestgar]

I am just at the end of it and I don't know how I can keep going on.

Marlene, I'm pretty sure everyone goes through this. Sometimes for a few minutes, sometimes for a few days. It's OK to vent here. Everyone understands, everyone supports you. Take care of yourself and trust that eventually you'll figure out everything that's making you sick and you won't have to feel this way anymore.

Jeanna

[jaten]

I can handle being on the gluten/casein free diet. I can't handle feeling sick anymore. My digestive system is completely haywire since having my gall bladder removed this past spring. I was diagnosed gluten/casein intolerant about 2 months later. I just want to feel better. I feel sick if I don't eat, I feel sick if I do eat. I was doing better for a couple of months but now I often have pain under my ribs -- exactly the same pain that made the specialist think my gall bladder had to come out. There is no bile there to digest my food when I need it and then when I don't....

Marlene, talk with your dr. or with the surgeon who removed your gall bladder. I had mine removed last spring also (because it did not function at all...tested at 0%), and very thankfully I am doing quite well. The surgeon who removed it told me that if I had any problems after the first few weeks to get back in to see him. He said that most people do completely fine, but occasionally someone will need to take an oral medication to bind the bile, and occasionally someone will need to take an oral med that compensates for a lack of bile. At any rate, according to what I was told there is very real help for people who suffer any side effects from gall bladder removal.

Have a good hard cry; you've been through a lot. Then decided on a course of action and follow it. Being proactive in difficult situations always helps me (when I finally muster the wherewithall to make a plan). Hang in there. You can do it.

[GlutenWrangler]

Marlene,

I understand how you feel about the gluten/casein-free diet. Unfortunately, the healing process is very slow and discouraging. But it sounds like you are doing everything right, which means only better days are on the horizon. I'm sorry that you are having such a hard time right now, but things will get easier as you heal. I agree that you should talk to your doctor about the bile issue. Hopefully he can offer you some help and insight. I hope you feel better. Good luck.

-Brian

[NoGluGirl]

I can handle being on the gluten/casein free diet. I can't handle feeling sick anymore. My digestive system is completely haywire since having my gall bladder removed this past spring. I was diagnosed gluten/casein intolerant about 2 months later. I just want to feel better. I feel sick if I don't eat, I feel sick if I do eat. I was doing better for a couple of months but now I often have pain under my ribs -- exactly the same pain that made the specialist think my gall bladder had to come out. There is no bile there to digest my food when I need it and then when I don't, bile comes rushing into my intestines and gives me diarrhea. I had a bad morning today, got a speeding ticket, had to drop something off at my daughter's school, was driving there feeling nauseas and like I wouldn't make it to the bathroom. Went to a coffee shop to use the bathroom but the bathroom was right where everyone was standing in line and I wanted more privacy. My daughter was complaining last night about having to walk somewhere because it would take her 20 minutes. I just flipped and started crying -- I wish I could walk anywhere (even if it took me an hour) without feeling sick. I am not even looking forward to Christmas. Somedays I just wish I had never been born.

I am taking digestive enzymes, L-glutamine, probiotics (these all do help to a certain extent), am extremely vigilant about my diet and try to eat only healthy, whole foods as much as possible. I just wish I could find something to regulate the flow of bile. I know it can take a few years to heal but I am so sick and tired of being sick and tired.

I know this sounds like a lot of rambling -- sorry. I am just at the end of it and I don't know how I can keep going on. Well, I feel like I am going to start crying again but I am at work so we can't have that, now can we? I better end this note here. Thanks for letting me vent.

Marlene

Dear Marlene,

Are you and me living in the same body? I had my gallbladder out about 3 1/2 years ago. Even after, I was still having nausea that was like morning sickness (smells make you sick, like perfume, food, etc.) severe acid reflux despite taking double the dosage of proton pump inhibitors, and pain in the stomach. It improved for a few months while I went gluten-free. Here lately, I have been feeling it again. First, make sure you watch your fat intake. After having the gallbladder out, it is important to do since you cannot digest it as well. Also, it prevents the idea that you could have a stone in your bile duct form. One possibility here is you could have an overgrowth of yeast. It can make you this sick. My doctor feels that is the problem with me. It makes you tired, sick and moody. It causes skin problems, headaches, allergies to food and the environment, depression, stomach problems, Fibromyalgia, Thyroid problems, adrenal gland burnout, and over 100 physical symptoms. There are times where I just cannot figure out why I am still alive I am so miserable. Sometimes, you hope that a deranged gunman will pop into the bank while you are there, and rob the place and then you could voluntarily jump in front of him so he will put you out of your misery. Of course, he won't shoot you, he will shoot the guy who just won the lottery instead, because that is how irony works. God will wait until you are rich and happy to kill you. LOL! You know I am kidding, right? I know, I am dark and twisty, and sadistic. That is what keeps me going! Hopefully, you got a laugh and feel a little better. I know it helps me to keep a sense of humor about things. I gripe and it aids survival.

Sincerely,

NoGluGirl

[Marlene]

Thanks all for the responses. I am a little leery of taking medication to control the bile because from what I understand, the medicine that binds the bile also keeps your intestines from being able to absorb other medications etc. I take a number of supplements spaced throughout the day so I don't want to screw that up. I guess I am leery of medicines for the most part because of the side affects. Maybe I should just go see my family doctor and ask her about it.

As far as yeast (candida overgrowth), that is a possibility. I started taking some homeopathic drops for my digestive system which included a candida die-off. I became so sick and had constant watery diarrhea so I had to stop doing that. I do think that the probiotic I am taking is probably still causing some candida die-off which may be causing some of the intermittent diarrhea that I still have. For me, this is one of the worst symptoms. I hate diarrhea with a passion. You never know when its going to strike and it's always at the worst moment. That and the pain below my ribs. I sometimes feel like I just want to drink something cool and creamy to coat my insides. I know that sounds really bizarre but that is what I envision when I am trying to cope with the pain.

NoGluGirl, you are right about having to keep a sense of humour. You are also right about the guy who just won the lottery getting shot! And of course, he wouldn't be a relative of mine so no inheriting any money there!!

I am just hoping that next year gets better. It has been a very rough year/decade for me on so many levels. I think that's why I am having such a hard time with this. It's just been one thing after an other and I am done, worn out, and fed up. I have to keep reminding myself that someday things will be better. Just not sure when!!

Marlene

[leg1999]

I was diagnosed with Celiac disease over a year ago and I can honestly say I'm at the end of my rope. The gluten free foods I've tried TASTE AWFUL -- dry, flavorless and just plain nasty. I've tried foods from health food stores and gluten free internet sites. I can't afford this diet. I miss eating "normal" food. I've become terribly depressed and am totally miserable.

I'm afraid to eat because I become sick, the lack of eating makes me sick, so I finally eat ---- and I get sick. I've lost 3 jobs because I missed so much work due to illness and Social Security's answer was "we know you 'think' you're disabled but....". I've read the list of permitted foods over and over looking in vain for something I might like but there's nothing. I hate rice and all the other "permitted" foods. I miss FLAVOR. My diet consists of peaches and cottage cheese. That's all I seem to be able to tolerate.

I personally know every bathroom in every store in this area thanks to the stomach cramps and need to RUN as soon as the pains hit. I'm tired of leaving bathrooms in tears.

My family has tried to accomodate my stupid condition but all that does is make family meals bland and unappetizing. I stopped going out to eat and decline all invitations because I'm tired of telling people I can't eat the food they offer.

I'm sick of feeling starved and sick of being sick!!!!

[Judyin Philly]

GOOD MORNING MARLENE AND ALL OTHER SUFFERERS,

I'M SO WITH YOUR ALL...

I'VE BEEN gluten-free OF 17 MONTHS AND UNTIL THE 5 MONTH, I WAS GREAT THEN SOY, THEN DAIRY, THEN TAPIOCA,

MY CHIRO PUT ME ON GLUTAMATE ALONE HAD TO STOP B/C THE LICORICE MADE MY LYMPHADEMA LEG SWELL..

MARLEEN YOU SAID YOUR """""I am taking digestive enzymes, L-glutamate, probiotics (these all do help to a certain extent), ""

MY CHIRO WANTED TO START ME ON THIS FORGET WHAT COMPANY MAKES IT..IT WAS FOR MY LEAKY GUT. DOES YOURS HAVE LICORICE?

I HAD CELLULITES FOR MONTH 1/2 THIS SUMMER AND NOW THE YEAST OVERGROWTH IS UNBEARABLE.

IN THE AREAS (FEMALE AREAS, AROUND THE ELASTIC AREAS/ (UNDER BREASTS, FOLD OF SKINS WITH TUMMY OVER LAP IS ALL RED LIKE SCALDED AND WHEN I SCRATCH OR ITCH IT I GET WHITE STUFF UNDER FINGER NAILS. WENT TO INTERNIST HE SENT ME TO DERMOT BUT SHE CAN'T SEE ME FOR 2 WEEKS..GOOD GOD, SO AGREE WILL ALL THIS EVER END WITH THE HAPPY RESULTS???????

ANY THOUGHTS APPRECIATED

JUDY

[key]

I got on here this morning, because my family went hiking without me. I feel like a hermit, because I am always sick and now I am afraid to leave my house. I have been gluten free for 18 months and can't go more then a month without being sick. A month is actually great. I am vegetarian, have tried giving up dairy, gave up caffeine and processed foods and I am still sick.

I have tried every digestive enzyme, probiotics, etc. My digestive system is the happiest when I don't eat! If I quit eating my stomach feels great, but of course then I get hungry. It got to the point where when I wasn't eating I was freezing all the time, no energy, etc. , so I had to start eating again. Now I am back to square one. Waking in the night with bloating, horrible reflux, nausea, etc.

I am also anemic, but my celiac panel came back normal after being gluten free for 18 months. So the numbers are down, but I guess I will have a colonoscopy and endoscopy. I just want my life back!!!!!!!!!!!!!!!!!!!! I am 32 years old and can't see living like this for the rest of my life. It is ruining my life. I also have given up eating out and decline all invitations to people's houses. I feel like my digestive system is up and down constantly.

Does anyone else get reflux when gluttened??

Sorry for all those that are sick. I am sick of being sick too and I am sorry I am not much help, but I can relate and your not alone.

Monica

[gfpaperdoll]

Dear Monica,

You have a problem somewhere & you need to be actively trying to figure out what it is.

Have you had blood work run & a general physical? Allergy Food tests?

Tested for parasites?

Are you taking a vitamin B12 everyday?

I cannot say anything about the probiotics, because I have never taken them & would never take anything like that as I am into just plain food. - but everyone is different...

Are you eating any replacemnet gluten-free things? If yes, I would cut those out right away.

If the people in your house are eating things like toast etc, I would put a stop to that, as you are probably getting cross contaminated. Anyone that is cooking two meals, gluten-free & non gluten-free is doing themselves an injustice. Have you read Dangerous Grains?

Have you checked into the Paleo Diet? Have you checked into the Specific Carbohydrate diet?

Have you researched the list serv?

Have you read the book "Super Foods"? (ignore the parts on wheat) it is not a gluten-free book.

Have you read the book "Eat Right for your Blood Type?

Have you checked into the Lectin Foods? (I cannot eat a lot of them, the main one for me is no potatoes)

Have you checked your meds to make sure they are gluten-free?

Are you Dairy Free? Sorry if you said, I am having several conversations in the house at once

Things will get better, so sorry that you are having such a difficult time. You could start on an elimination diet, it is no fun, but when you are desperate...

To the person that is eating bland food: There is no reason for this as you can have a lot of things, Fry yourself a sweet potato and sprinkle some Tony Chachere Creole Seasoning on them while hot, that will give you a little flavor!! really a lot of us eat great gourmet meals. I cook very well and creatively. (& I do not use replacement gluten-free foods) I will say that the gluten-free guy in one of my offices was amazed at the foods that I started feeding him at lunch. He had been gluten-free for 3 years and was still in somewhat of a depression about his food, he was mostly eating the same things, & not checking the internet etc for recipes. He did not even know there was a gluten-free soy sauce. Myabe you could get a bunch of gluten-free Cookbooks or check them out from the library & get a few new dishes in your recipe file. Or check the recipes on this board and you can also google gluten free recipes and get more stuff than you could ever cook. A lot of us work & cook one day a week & freeze meals etc. It can be done & at some point just becomes habit.

[Judyin Philly]

hi ALL

I Think that most of us who have posted have been really trying to find answers.

Since some of us have been gluten-free for awhile and we're still having problems that aren't getting better

i can relate to Monica who stays 'behind' while family moves forward with their lives..it's no fun.

Marlene and Angie, i'm so glad for your posts as they are issues i'm looking for answers for also (except for the gall bladder) i still have mine.

Monica, I rarely get reflux but can when glutened..probably not w/gluten but dairy so don't know what to call the one.

I truly believe i have an over growth of yeast and have candida. know we have to illiminate sugars, right. which i mostly have done anyway.

i was shocked that you said when you don't eat. (like me cause i feel sick to my stocmach and nothing but broth sounds good. (thank God for me gluten-free homemade ck soup I freeze by the gallons)

my temp is now 97.6 for me and i'm freezing ALL THE TIME. Just last week i had and unexplained temp of 103 for 2 days and dr doesn't know why???? being cold is new to me..i was usually hot

i just saw the dr on Monday and he didn't have any answers. as i said can't get into derm till Jan 2nd.

so i sit and itch and scratch and freeze.

good luck to you all.

i know that you guys are all trying.

oh yes, from gfpaperdoll, the toaster was a big deal for me and since we got mine and one for hubby i've done much better.

hope we can keep this thread going as we all are 'REALLY TRYING AND HAVE BEEN FOR AWHILE'

Judy

[NoGluGirl]

hi ALL

I Think that most of us who have posted have been really trying to find answers.

Since some of us have been gluten-free for awhile and we're still having problems that aren't getting better

i can relate to Monica who stays 'behind' while family moves forward with their lives..it's no fun.

Marlene and Angie, i'm so glad for your posts as they are issues i'm looking for answers for also (except for the gall bladder) i still have mine.

Monica, I rarely get reflux but can when glutened..probably not w/gluten but dairy so don't know what to call the one.

I truly believe i have an over growth of yeast and have candida. know we have to illiminate sugars, right. which i mostly have done anyway.

i was shocked that you said when you don't eat. (like me cause i feel sick to my stocmach and nothing but broth sounds good. (thank God for me gluten-free homemade ck soup I freeze by the gallons)

my temp is now 97.6 for me and i'm freezing ALL THE TIME. Just last week i had and unexplained temp of 103 for 2 days and dr doesn't know why???? being cold is new to me..i was usually hot

i just saw the dr on Monday and he didn't have any answers. as i said can't get into derm till Jan 2nd.

so i sit and itch and scratch and freeze.

good luck to you all.

i know that you guys are all trying.

oh yes, from gfpaperdoll, the toaster was a big deal for me and since we got mine and one for hubby i've done much better.

hope we can keep this thread going as we all are 'REALLY TRYING AND HAVE BEEN FOR AWHILE'

Judy

Dear Judy,

That low body temp could indicate a slow thyroid. I have had thyroid problems for quite a while now. It is either too slow or too fast! Right now, it seems to be hyper. That is common with candida. Also, I have done a lot of research about it, and bought so many books I cannot possibly count them. I even wrote an essay on it. I would be more than happy to e-mail you a copy! Just ask!

Sugar is only one of many things you are not allowed on the candida diet. Mushrooms, peanuts and peanut butter, dairy, fruit, white rice, and even coffee and tea are forbidden. You also are only allowed to take in 60 to 80 grams of carbohydrate daily to fix it. Low blood sugar, (got it) Fibromyalgia, (got it) eczema (got it) are also problems that tend to come with it.

Sincerely,

NoGluGirl

[NoGluGirl]

I got on here this morning, because my family went hiking without me. I feel like a hermit, because I am always sick and now I am afraid to leave my house. I have been gluten free for 18 months and can't go more then a month without being sick. A month is actually great. I am vegetarian, have tried giving up dairy, gave up caffeine and processed foods and I am still sick.

I have tried every digestive enzyme, probiotics, etc. My digestive system is the happiest when I don't eat! If I quit eating my stomach feels great, but of course then I get hungry. It got to the point where when I wasn't eating I was freezing all the time, no energy, etc. , so I had to start eating again. Now I am back to square one. Waking in the night with bloating, horrible reflux, nausea, etc.

I am also anemic, but my celiac panel came back normal after being gluten free for 18 months. So the numbers are down, but I guess I will have a colonoscopy and endoscopy. I just want my life back!!!!!!!!!!!!!!!!!!!! I am 32 years old and can't see living like this for the rest of my life. It is ruining my life. I also have given up eating out and decline all invitations to people's houses. I feel like my digestive system is up and down constantly.

Does anyone else get reflux when gluttened??

Sorry for all those that are sick. I am sick of being sick too and I am sorry I am not much help, but I can relate and your not alone.

Monica

Dear Monica,

I get reflux when I am glutened as well. It was so bad before I went gluten-free that I had to practically sleep sitting straight up! The stomach cramps, poking pain all over the abdomen, bloating, difficulty losing weight, and unrelenting nausea are all problems I have experienced besides getting the runs. I too, have tried probiotics, digestive enzymes, etc. I have been like you where I feel to bad to even go see my grandparents or anyone else most of the time. Taking antinausea medication like promethazine is the only way I can make it to the dentist or doctor. Then I am exhausted when I get back and cannot do anything else. I almost never get out either.

Sincerely,

NoGluGirl

[allison]

Just wanted to put my two sense in...I'm 22 y.old and i feel like my life has just stopped. My mom basically can't do anything either because I've been staying with her instead of in my own apartment and she's taking care of me. I feel awful for her! It's so wonderful of her to do this for me!

Anyway, I think the worst part of this is going to doctors and them just having no idea what's wrong/nothing to tell you. Here it is almost Christmas and I'm worried sick b/c I feel so awful and I can't even call my doctor (or any doctor) because they are all away on vacation.

Do you guys watch the tv show "House"? If so, how great would it be if you could have House for just one day?! I bet he'd figure out what's wrong with us! (For those who don't watch, House is a doctor who seems able to figure out EVERYTHING--he just thinks about it for a while and then has an answer. And when he's wrong the first time--get this--he TRIES AGAIN!

Maybe we should make this an inspirational thread--like everyone post your favorite poem/or name of a book of movie that cheers you up. Then people can still share their sorrows, but there will be nice things in between to cheer people up!

But either way, I'm right there with you guys!

Allison

[NoGluGirl]

Thanks all for the responses. I am a little leery of taking medication to control the bile because from what I understand, the medicine that binds the bile also keeps your intestines from being able to absorb other medications etc. I take a number of supplements spaced throughout the day so I don't want to screw that up. I guess I am leery of medicines for the most part because of the side affects. Maybe I should just go see my family doctor and ask her about it.

As far as yeast (candida overgrowth), that is a possibility. I started taking some homeopathic drops for my digestive system which included a candida die-off. I became so sick and had constant watery diarrhea so I had to stop doing that. I do think that the probiotic I am taking is probably still causing some candida die-off which may be causing some of the intermittent diarrhea that I still have. For me, this is one of the worst symptoms. I hate diarrhea with a passion. You never know when its going to strike and it's always at the worst moment. That and the pain below my ribs. I sometimes feel like I just want to drink something cool and creamy to coat my insides. I know that sounds really bizarre but that is what I envision when I am trying to cope with the pain.

NoGluGirl, you are right about having to keep a sense of humour. You are also right about the guy who just won the lottery getting shot! And of course, he wouldn't be a relative of mine so no inheriting any money there!!

I am just hoping that next year gets better. It has been a very rough year/decade for me on so many levels. I think that's why I am having such a hard time with this. It's just been one thing after an other and I am done, worn out, and fed up. I have to keep reminding myself that someday things will be better. Just not sure when!!

Marlene

Dear Marlene,

It sounds like those drops have caused a Herxheimer reaction. That yeast die-off lasts a while sometimes. The good news is that is how you know it is working and killing it. Candida also is tough to kill, and the diet must followed very strictly. You have to limit your carbohydrate content to between 60 and 80 grams daily. No sugar of any kind, no refined carbs like white rice, no peanut butter or peanuts, no pistachios, no fruit, no dairy (except plain yogurt with no fruit) no mushrooms, truffles, fermented foods like soy sauce or vinegar, no alcohol, coffee, tea (except green) no dried spices, and you need to rotate your foods. Eat no same food but once every four days. This prevents new allergies from developing, while at the same time identifying foods that are allergens. I hope this helps. I am overwhelmed by the rotation diet, too. It can be expensive, and we are on a budget.

Sincerely,

NoGluGirl

[mamabear]

hi ALL

I Think that most of us who have posted have been really trying to find answers.

Since some of us have been gluten-free for awhile and we're still having problems that aren't getting better

i can relate to Monica who stays 'behind' while family moves forward with their lives..it's no fun.

Marlene and Angie, i'm so glad for your posts as they are issues i'm looking for answers for also (except for the gall bladder) i still have mine.

Monica, I rarely get reflux but can when glutened..probably not w/gluten but dairy so don't know what to call the one.

I truly believe i have an over growth of yeast and have candida. know we have to illiminate sugars, right. which i mostly have done anyway.

i was shocked that you said when you don't eat. (like me cause i feel sick to my stocmach and nothing but broth sounds good. (thank God for me gluten-free homemade ck soup I freeze by the gallons)

my temp is now 97.6 for me and i'm freezing ALL THE TIME. Just last week i had and unexplained temp of 103 for 2 days and dr doesn't know why???? being cold is new to me..i was usually hot

i just saw the dr on Monday and he didn't have any answers. as i said can't get into derm till Jan 2nd.

so i sit and itch and scratch and freeze.

good luck to you all.

i know that you guys are all trying.

oh yes, from gfpaperdoll, the toaster was a big deal for me and since we got mine and one for hubby i've done much better.

hope we can keep this thread going as we all are 'REALLY TRYING AND HAVE BEEN FOR AWHILE'

Judy

Judy,

I don't know if this might help, but red,itchy,moist rashes in skin folds sometimes get better with liquid Maalox applied to them. Use a cotton ball to apply gently a thin coat. You might test a small area first to be sure you won't have an unusual reaction. Like none of us have had THAT happen before!! Kind of works through the magnesium salts;soaking up any moistness that traps in the folds. Just let it dry in the open air. If your skin heals with that, then keep it dry with corn starch powder. Hope this helps!!!! And a belated Happy Birthday !

Ann

[NoGluGirl]

I was diagnosed with Celiac disease over a year ago and I can honestly say I'm at the end of my rope. The gluten free foods I've tried TASTE AWFUL -- dry, flavorless and just plain nasty. I've tried foods from health food stores and gluten free internet sites. I can't afford this diet. I miss eating "normal" food. I've become terribly depressed and am totally miserable.

I'm afraid to eat because I become sick, the lack of eating makes me sick, so I finally eat ---- and I get sick. I've lost 3 jobs because I missed so much work due to illness and Social Security's answer was "we know you 'think' you're disabled but....". I've read the list of permitted foods over and over looking in vain for something I might like but there's nothing. I hate rice and all the other "permitted" foods. I miss FLAVOR. My diet consists of peaches and cottage cheese. That's all I seem to be able to tolerate.

I personally know every bathroom in every store in this area thanks to the stomach cramps and need to RUN as soon as the pains hit. I'm tired of leaving bathrooms in tears.

My family has tried to accomodate my stupid condition but all that does is make family meals bland and unappetizing. I stopped going out to eat and decline all invitations because I'm tired of telling people I can't eat the food they offer.

I'm sick of feeling starved and sick of being sick!!!!

Dear Legg1999,

I know exactly how you feel! I am going through the gluten-free depression as well. I have been gluten-free for about five months now. It is frustrating because I cannot afford any of the tasty stuff. It is all so expensive. Soy cheese is scary in price! I miss flavor as well. A yummy thing with taste is Classico Sweet Basil Pasta Sauce. There is also some cakes at the Chocolate Emporium that are reasonably priced. They have three flavors. They are about $3.29 each. You can get all three for under $20 including shipping. They are nice to treat yourself to. The cramping is very miserable. I have that today, but it may be the candida since I am paranoid careful about gluten. I am hungry almost all of the time too! It is awful! You feel like you are starving! I am just exhausted from having to obsessively clean everything (I am the only one g.f. in our home) and cook all the time.

I am a college student as well as a business owner trying to get things going. So far, I have had no luck. It is so depressing! Don't worry, we are in this together! A great kitchen gadget that could help though is the Magic Bullet. You can get them at Kohl's. They were about $60, but I think they are less right now. I hope I get one for Christmas! Dad broke the one he got for his birthday!

Sincerely,

NoGluGirl

P.S. I have Chinese Food withdrawal all the time! I could live off of it!

[Judyin Philly]

Dear Judy,

That low body temp could indicate a slow thyroid. I have had thyroid problems for quite a while now. It is either too slow or too fast! Right now, it seems to be hyper. That is common with candida. Also, I have done a lot of research about it, and bought so many books I cannot possibly count them. I even wrote an essay on it. I would be more than happy to e-mail you a copy! Just ask!

Sugar is only one of many things you are not allowed on the candida diet. Mushrooms, peanuts and peanut butter, dairy, fruit, white rice, and even coffee and tea are forbidden. You also are only allowed to take in 60 to 80 grams of carbohydrate daily to fix it. Low blood sugar, (got it) Fibromyalgia, (got it) eczema (got it) are also problems that tend to come with it.

Sincerely,

NoGluGirl

I HAVE HYPOTHYROID ..SINCE THYROID WAS NUKED WHEN I WAS IN THE THIRD GRADE AND IN 79 HAD A GOITER REMOVED AND THYROIDECTOMY SO ON SYNTHROID NOW..SEEMS LIKE ALWAYS ON IT.

MY THYROD TESTS ALWAYS COME BACK OK.

THANKS FOR THE TIPS ON STUFF TO APPLY WITH THE COTTON BALLS TOO

CAN YOU PLEASE SEND ME THE LINKS WITH ALL THE RESEARCH YOU'VE DONE.

WHAT ABOUT THE 'THE YEAST CONNECTION' BOOK?

HOW DO YOU GET CANDIDA AND YEAST IN THE FIRST PLACE?

THOUGHT IT WAS FROM ANTIBO

HAVE TO RUN BUT WILL CK LATER TONIGHT.

THANKS SOOOOOOO MUCH FOR THE HELP.

JUDY

[NoGluGirl]

I HAVE HYPOTHYROID ..SINCE THYROID WAS NUKED WHEN I WAS IN THE THIRD GRADE AND IN 79 HAD A GOITER REMOVED AND THYROIDECTOMY SO ON SYNTHROID NOW..SEEMS LIKE ALWAYS ON IT.

MY THYROD TESTS ALWAYS COME BACK OK.

THANKS FOR THE TIPS ON STUFF TO APPLY WITH THE COTTON BALLS TOO

CAN YOU PLEASE SEND ME THE LINKS WITH ALL THE RESEARCH YOU'VE DONE.

WHAT ABOUT THE 'THE YEAST CONNECTION' BOOK?

HOW DO YOU GET CANDIDA AND YEAST IN THE FIRST PLACE?

THOUGHT IT WAS FROM ANTIBO

HAVE TO RUN BUT WILL CK LATER TONIGHT.

THANKS SOOOOOOO MUCH FOR THE HELP.

JUDY

Dear Judy,

I do have The Yeast Connection, by Dr. William G. Crook, among other books. Another good one is The Yeast Syndrome. Candida is caused by a number or things. Being on a lot of antibiotics is one primary cause. Using steroids (I used to need inhalers for my asthma) and birth control (I also have had ovarian cysts) are other well-known causes. Pregnancy can alter your hormones as well. Women who have given birth multiple times are at a high risk as well. I have to send my paper in an attachment by e-mail, so I need your address. My e-mail is rainbow_geisha@hotmail.com.

Your thyroid tests may be okay, but that does not mean they are correct. According to an article I read, about 50 percent of women whose blood tests came back normal actually had slightly underactive thyroid levels. When mine was slow, I actually had to go off of the medication because it made my heart pound, I couldn't sleep, and I was shaking all over. I went herbal. I started using virgin coconut oil, (2 - 3 Tablespoons a day) Solaray Rosemary Leaf Extract (1 capsule daily) and Ashwaghanda (1 capsule daily) avoided sugar, stuck with unrefined carbs when possible, ate a serving of fish or beans daily, and tried to walk for at least ten minutes a day briskly. Due to your Thyroidectomy, I do not know if this would be as helpful for you, but it would be worth a shot to ask your physician. I was not the person who suggested Maalox for your skin, so I do not deserve the thanks there. That was GFMemphis.

Sincerely,

NoGluGirl

[leg1999]

** Sorry, hit add post by mistake. Full post below.

[key]

I am sorry you are so sick. It is miserable, but you have to tell yourself it will get better. It has too! I hope it is sooner rather then later.

I know there are other's on here that eat a very basic diet gluten free. Just veges, bananas, potatoes, beans and meat. That is what I have been doing lately and yes it isn't fun to have to eat this way when other's aren't. I try and tell myself that other people do have other problems that we aren't always aware of.

As a matter of fact, I was getting my eyebrows waxed the other day and the lady doing it somehow found out my son and I had Celiac disease. She got really excited, because she thinks she may have it too and wondered how to get tested. She said she is running to the bathroom with D all the time, she was thin, etc. It is sad, but I had really been feeling sorry for myself, because I had tried to go somewhere that day and was running to the bathroom and missed most of the fun with my family.

It does stink and I really hope you can start feeling better. I have VERY bad days where I feel like giving up, but I have three little boys that are under 7 years old, a husband and family that love me. Despite all my quirks and illnesses!

Hang in there!!!

HUgs

Monica

[leg1999]

First let me say thank you to everyone for sharing. It does help to be able to express my feelings and frustrations.

Unfortunately, dispite knowing others suffer too, I still have to say that this is no way to live. Being hungry or sick all the time. Left behind as family and friends live their lives. Asking everyone in the household to change (i.e. putting a "stop" to others in the household eating bread - sorry, I don't have the right to demand they change because of me). Fearing eating and then suffering the consequences when you do. I'm miserable and, like it or not, I make those around me miserable too.

Suggestions of foods and gadgets are nice but when I say I can't afford them I really mean it. I'm unemployed because of this disease. I can't commit to a job that requires me to work in a setting outside my home, not to mention the problems driving from home to another location. I've made emergency bathroom stops at some pretty disgusting places just minutes after leaving the house all because of the cramping and diarrhea.

Vitamins, supplements, wholistic medicine, tests, procedures, etc.? Forget it. Being unemployed and uninsured, I also can't afford doctors, medicines, medical tests or any other such thing. I have four broken teeth, most likely because the years of suffering undiagnosed celiac disease interferred my ability to absorb nutrients, -- but, of course I am not able to afford dental care. My glasses are scratched so bad I only wear them to drive so I see the world with unfocused eyes all the time.

I'm not stupid! I am 54, have master's degree and have worked as a nurse for over 22 years. But thanks to this disease, I am a leech living off my family. I'm not sure how I will survive when the unemployment benefits end in two months. I filed for Social Security Disability but they turned me down saying they acknowledge I "think I'm disabled". In my appeal, I've asked them to remember their worst days sickened by an intestinal virus and recognize that is MY EVERYDAY. You know those days when you hold your gut groaning and wishing you could die to get relief from the misery. The difference is that the sufferer of a virus knows they will eventually feel better while I know that my tomorrow will bring no relief.

I read all the product labels to avoid eating hidden gluten. All those words that I can't pronounce and don't understand mean nothing to me. I truly get tired of this routine. I get frustrated when I crave a bowl of tomato soup and know I can't just open a can of Campbell's soup because it contains gluten. I can't even grab a McDonald's milkshake. Why on earth would that contain gluten??? I've wasted enough money trying "gluten-free products". Tasteless cookies, "crackers" so hard that I fear breaking another tooth, bread that tastes and feels like cardboard, etc., etc.

I went to doctors, suffered the indescribable pain caused by the "cleansing prep" and humiliation of allowing someone to stick a pipe up my tush and down my throat. What did I get? A two second announcement "You have Celiac Disease" and prescription to consult with a dietician. I saw the dietician and the only thing I learned was there is no hope. Any food I consider tasty is out of the question and the choices I'm left with is stuff I've hated all my life. The list of gluten-free foods is short and unappetizing. Hence, I search the frig, freezer and cupboard day in and day out looking for something - ANYTHING -- that will satisfy me. Eventually, I give up and choke down something nasty and unsatisfying like cooked carrots just to make the hunger go away.

No, in my previous life, I didn't eat healthy but the food I ate was satisfying. The day I was diagnosed was the day I received a life sentence to a prison of pain, unmet needs and misery. The only thing my doctor gave me was a name to my tormentor. I can't live this way. I'm tired of living this way. I don't want to live this way.