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I Know What's Wrong Now, When Will I Get Better?


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38 replies to this topic

#16 Lily

 
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Posted 03 January 2004 - 05:10 AM

PS.........I just wanted to let everyone know to be careful of the supplements you buy. My nutritionist says she has only found 4 or 5 brands that are safe for gluten allergies. Many supposed gluten free products still dust their lines with flour. The following products are what she has deemed safe for me as far as supplements go....

Tyler Products
Metagenics Products
Oregon Health
KTS Liquid Minerals

My P-5-P I can't find the company on, but this is a start if you are interested. I realize everyone may not be as sensitive as me, but she has told me if it is processed, be suspicious! She only recommends Knudsen fruit juices, etc.. Once I totally detoxify myself I'll have to see what I'm truly allergic too.

All of this is costing a small fortune, but I am excited to find out what it feels like to be healthy.

Lily
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#17 dhickey

 
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Posted 03 January 2004 - 01:30 PM

:) Thanks a bunch Lisa and Lily,
This is so hard to deal with I have to deal with the depression as well and have been on antidepressants. (which is just don't like to take) I feel like I'm so alone in this - my husband is great but he doesn't understand. I want to talk about it because I just don't understand why I was born with this or inherited it. I went to a grocery store here in MA called Wild Oats and they have so much stuff for people with celiac disease. I'm going to go out and buy a bread maker and start baking bread and other stuff that I can eat.
It's really hard my husband's uncle has this and when he comes over to my in-laws for dinner they go out of their way to fix things he can eat, but when I go they don't and they live downstairs. It's really frustrating. So I guess I will just have to either bring my own food or just eat in my own home - which I would prefer....

gf4life thanks for the email - that was a blessing. I was really stuck on what not to eat and what I could eat. I most definitely will be using the info.
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#18 gf4life

 
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Posted 03 January 2004 - 01:39 PM

filititi, have you checked into whether there are any celiac support groups near you. It really would help to meet other people near you who are going through the same thing. A good place to find support info is at enabling.org they have a very large database of support groups listed by states. It is normal to feel depressed and sad about having to give up "normal" foods, but don't let it rule your life. If you haven't read Danna Korn's book "Wheat Free, Worry Free" I highly recommend it. It really helps learn so much about how to deal with the disease and not only accept the diagnosis, but to embrace it and see the good in it. She writes in a very amusing style, so it is very uplifting. Good luck, and I'm glad your are here on the message board.
God bless.
Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#19 gf4life

 
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Posted 03 January 2004 - 01:46 PM

dhickey, Now that is just not nice that your in-laws will make special meals for your husbands uncle and not for you! I don't know why some people (especially family members) do this to us. As for the bread maker, it is not really needed for gluten-free breads. You can save yourself a bunch of money and just get a few new bread pans. Most of the gluten-free breads do better mixed by hand and baked in the oven. They don't need the extra kneading and rising cycles of a bread maker, and in fact they will not work as well if you use them. I use my bread maker for gluten-free breads only in the summer when I don't want my house heated up by the oven. I mix by hand and stick it in the pan to rise once and then bake it on the bake only cycle. During the winter it is nice to bake in the oven to warm up the front part of my house. You could probably use the money to buy a lot of different foods, rather than a bread maker. But if you do get one make sure that you get one that can do gluten-free breads. Good luck.
God bless.
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#20 midnightjewel40

 
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Posted 03 January 2004 - 06:33 PM

:o filititi hang in there is is hope for you yet have you had you iron levels checked i felt like you thought that things couldnt get any worse and then things got a little better as we go i have learnt if i feel like i want to cheat (which idont as the pain i can do with out) i make an equivilant to like you say you want pizza make your own you can have what ever you want on top of it and its all yours nobody else who doesnt have this condition understands as they dont have to give up things things they like maybe we should celiacs day and for one day they give up everything and have only our diet then maybe they would understand i bet the cheat too hehehehehe anyway hang in there
there is light at the end of the tunnel
jacque
:lol:
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Hope you have a great day
Jacque.
my 15 year old and i are both celiacs

#21 wclemens

 
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Posted 03 January 2004 - 09:48 PM

Lily and Filititi, I also suffered for a long time with depression, but it takes awhile to discover all the foods that may be bothering you, and many times I think the depression comes after eating one of those undiscovered foods, so if you can be very diligent about noting your reaction to each and every food you eat, soon you will find yourselves feeling better, and the depression will lift.

Also, I've heard that depression is anger turned inward, and that anger is a mask for hurt, so perhaps you are at the point where you just need to grieve and cry some, for your old way of life that has passed, and for the new, unknown path that you are on now, which could be a bit scary, but really, once you find that there are SO many people with celiac, and that new people are being diagnosed every day, that should lessen the pain somewhat.

Picture yourselves at a time in your life when you felt really good, before all the illnesses set in--that's the way you will feel again, once your bodies have begun to heal. Here's the neat part: our bodies are our early warning systems for what we need, and what we need to eliminate. One of the ways our bodies can speak to us is through various symptoms, such as headaches, a rash, stomach aches, etc. Isn't it amazing that our bodies can be such good friends to us?

There are food additives, such as msg and maltodextrin which may also be bothering you. They cause me to wheeze drastically when I ingest them. Once you are in tune with how your body speaks to you, you will easily recognize what it is trying to say.

About family members and celiac--experts recommend that all family members be tested once a person is diagnosed, because this is a genetic disease. Sometimes a person has no symptoms, but celiac can be doing its damage nevertheless. Enterolab testing is a home test kit that can be used to identify if one carries the gene for celiac, as well as if one is gluten sensitive or allergic to a variety of other foods. I have celiac and other allergies, and my 8 month old grandson was diagnosed as gluten sensitive and allergic to all milk and dairy products at two months, and he will never have to experience what we have gone through with this disease.

Also, having celiac leads one to become proactive in taking control of our lives and in taking care of ourselves. Packing food to take wherever you go becomes second nature in time, and the sense of accomplishment you feel as you take good care of yourself is great. Life becomes an adventure and a challenge each day, as we learn more about celiac, ourselves, and sharing with others what may be causing their distress.

Welcome to the adventure! Welda
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#22 gf4life

 
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Posted 03 January 2004 - 10:10 PM

Oops... The link I made in the post above to get to enabling.org was wrong, but I fixed it now. Sorry to anyone who might have tried to access it before.
Mariann :huh:
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#23 lily80

 
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Posted 05 January 2004 - 02:43 AM

Hi all,

Thanks for being so open and honest about how you all feel. We are a minority group whether we want to be or not. I get very depressed at times with having this affliction, but I have come to realise that since my diagnosis that nothing will ever be the same, except that I am now in control. I know why I felt physically ill for so many years and that the medical profession, as clever as they think they are, miss diagnosed myself and so many others of you for so long. The simple fact is THEY DON'T KNOW!!!!!! We need to band together and keep this site going for support. At times this site is the only thing that keeps me from being committed. :lol: Thanks so much to all of you. :D
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#24 Guest_LisaB_*

 
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Posted 05 January 2004 - 09:59 AM

On Welda's note about depression that would be caused by an emotional root, that is something to take seriously. The brain chemistry will be altered by malabsorbtion of course, but on top of that, many of us have been through a lifetime of pain. Some of us were always misunderstood, made to feel guilty, berated, put down, felt unloved by family or friends that did not understand. Not to mention that any of us could have gone through trama in life unrelated to Celiac that we were especially unable to cope with since we were also ill and weak. When a negative emotion (or any emotion) is created in the body, there is an glandular response to that, ie you feel anger, adrenaline is released into your system...for every emotion that happens there is a release of hormones. In the case of anger, if you have years of unresolved anger, you have years of adrenaline release, now adrenaline is meant for a fight or flight situation meaning your muscles are supposed to use that up, if it doesn't get used up, it courses through your veins and since it isn't supposed to be there, causes damage and eats away at artery walls and damage the heart....thus anger unchecked leads to heart problems. In the same way, other emotions may have added to our problems...there is a good book I read, not that I agree with all of it, but it was still good, it is "Feelings Buried Alive Never Die", it helped me more than a decade ago.

Now, someone like the author of that book will say that poor health is all emotional, that is a load of crap, but if you read it or find out similar info, it can help with the things that you may carry around with you and you may just feel 10 pound lighter unloading all that baggage, I did.

Lisa
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#25 wclemens

 
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Posted 13 January 2004 - 12:55 PM

LisaB, thank you for the explanation of how the adrenaline rush can lead to heart disease. I had never quite looked at it that way before, but the way you put it makes perfect sense. Thanks again. Welda
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#26 irish

 
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Posted 13 January 2004 - 10:33 PM

THANK GOD FOR THIS MESSAGE BOARD!!!. Before this disease I was always upbeat now I am depressessed. I was told it must be nerves. I was out of work for a week, (I work nights), I finally thought I was better but guess again I had to call my sister to pick me up from work. I get so depressed because this disease took away my social life. Sometimes I catch myself thinking there is no guy out there that would want a sick woman (I'm 38 years old) . I feel if I was already in a relationship and I was diagnose with this disease it would be easier. Thanks again Loretta
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#27 seeking_wholeness

 
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Posted 13 January 2004 - 11:07 PM

Loretta, being in a relationship when you are diagnosed with celiac disease just presents a different set of issues! I even wondered at one point if my marriage would survive, there was so much angst between myself and my husband over preparing food and socializing with friends and decontaminating the kitchen and putting the kids on the gluten-free diet since they both show symptoms as well and this and that and...you get the picture. It really didn't help that I am self-diagnosed and have NO way, realistically, to be tested conventionally. (I had already been wheat-free for about a year for my breastfeeding baby's sake, so I would have had to gluten-load for testing--which would very quickly have caused the return of the suicidal feelings I had so recently conquered with the gluten-free diet!) In a way, it's a blessing that you can spend some time focusing on *your* needs, without worrying about what anyone else needs from you! And don't forget, with a prevalence of 1 in 133 people, celiac disease is bound to affect at least one desirable eligible bachelor of an appropriate age! There might even be one in your area, and he might attend support group meetings! :D I wish you the best of luck as you settle into your new lifestyle!
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Sarah
gluten-free since November 1, 2003

#28 Guest_LisaB_*

 
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Posted 14 January 2004 - 12:19 AM

Loretta,

Hi, I am with you honey! I am 36 and single and have all the same feelings you do, it is especially hard when you don't look sick (I did in the end, but I didn't for a long time or at least not badly enough that makeup didn't cover it) and people have "normal" expectations of you. It would be awful, but it almost seems like it would be easier to be terribly sick looking and then they would natually be scared off! But I agree with Sarah, especially after seeing my Mother go through what she did in her marriage while being very ill, if you know what is wrong that is bad enough, but to have the person you love doubt you and blame you is pure hell. I new at 16 when I started to develope the same problems as my Mother had (and she has been everywhere for help to no avail) that I had to seriously consider never getting married, I knew what I was in for and how hard it would be on someone else and I had no hope of getting better so...

Although I never married, I did have an active social life until the last 4 years or so and then I crashed and have not had any in that time, so we are in the same boat. That is the hardest part for a social person like me (and you it sounds like). I mean your in an impossible situation, you can't handle being around people and have NO energy to do anything and yet you crave it at the same time that you don't want to be around anyone (wierd I know) and you go deeper and deeper into depression because you have no interaction! It just stinks! If you dragged yourself out to do something, it wouldn't be fun anyway, there is no solution. I am just starting to feel the mental energy coming back to be able to enjoy something, but honestly the big difference has been taking St. Johns Wort and Kava at the same time. Made a big difference for me because although I had some more energy starting to come back after being gluten-free, but there was still something missing, I had no motivation or mental energy, and was still very depressed. After taking the St Johns/Kava it flipped the switch. I have a long way to go, but I'm getting there.

Hang in there and chin up! It will get better and at least we are not doomed to fall apart further and maybe someday we can both feel free to love someone completely and invite them into your life without it being such a stressful, humiliating experience.

Lisa :wub:
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#29 beanpotcutie21

 
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Posted 15 January 2004 - 10:59 AM

Hi everyone! My name is Melissa.

I just joined this forum. Everyone seems to be doing so wonderful! :D Everyone seems soo supportive and helpful, I was wondering if someone could give me some advice?

I was diagnosed will Celiac Disease about a month and a half ago. I felt alot better when I could stick to the diet, but now it seems like I am always making mistakes and getting sick. I TRY SO HARD. I had been sick for what seems like forever and I am definately feeling better, but I get soo frustrated when I get sick!

One of the biggest problems is that I am only 22 years old. I go to college, and since I am a music major I have 13 classes. On top of that I work anywhere from 25-35 hours a week, plus my extracurricular stuff. I'm never home and I find it really hard because I don't have alot of time to cook for myself. I have to eat on the go. Plus, I work as a waitress, so I am always around gluten-loaded foods I live in an apartment with a school mate and we have an EXTREMELY small kitchen. With a roomate around, everything gets contaminated, even after I told her to be careful- but it's not her fault, she doesn't know! On top of all this, on a college student's budget, it is breaking my bank account to buy food.

I guess what I'm asking is how do I deal with this diseas with limited time and a even more limited budget. I get so frustrated and depressed, I cry all the time. I can't even go to the movies with my boyfriend and order popcorn because I am afraid to get sick. I've given up going out to eat, I tried it a couple times and got sick every time. There is only 1 retaurant in town I can trust. Does it get any better.? Do you constsly struggle with feeling different? I always feel like I'm a pain in the butt, especailly with my friends and family, because they have to cater to me. I'm sorry to be an emotional mess, but I haven't had anyone to talk to about this...

PLEASE HELP!!!!

Thank you soo much,
:unsure: Melissa
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#30 oreyes

 
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Posted 15 January 2004 - 06:44 PM

Lily,

I was diagnosed with Celiac two and a half years ago after going undiagnosed since 1991 when I had a colonoscopy, which of course showed nothing. I was lactose intolerant, anemic, had arthritis flair-ups, constant diarrhea and bloating. My energy level was very low since my Hgb level dropped to 5.4 at one time (the norman for a female is 12-14). I had six blood transfussions over a period of seven years trying to get it back to normal. That gave me energy for a while until it started dropping again. Of course that was because I was not absorbing any nutrients. (the only positive thing that occured--if you could call it positive--I lost quite a bit of weight). After seeing a hemotologist and different gastroenterologist I was finally diagnosed. I could not get my iron levels up because I was unable to tolerate the oral meds. After an iron infusion I felt like a different person. I feel blessed that this can be controlled with diet only for me. No unnecessary medications or surgery and it's not life threatening if the diet is followed.

I am no loger lactose intolerant and of course the intestinal symptoms have disappeared as long as I stay gluten free. I have found many substitutes at the health food stores, including pretzels, a soy pizza and crackers, cookies and cake mixes that are really quite tasty. There are many items that can be purchased on-line through the Gluten Free Mall if you don't have a health food store near. The only thing I've not found was a decent tasting bread and I do miss an occassional sandwich and hamburger.

For you that have just been recently diagnosed, don't become too discouraged, it could be much worse. Give yourselves time to heal. As several have stated before, it's not an overnight cure. It may have taken you years to become this way and your not going to heal overnight. I'm a registered nurse and there are many things much worse than what we are experiencing.

Best of luck to all of the newly diagnosed. You can do it, especially when you start feeling the results of a new way of life.............Judy
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