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I Know What's Wrong Now, When Will I Get Better?
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I am 35 years old and have never felt well. I took a terrible downturn this year and gave up on the doctor's and started seeing a nutritionist. She is the one who figured out I have gluten allergies. I went to te dr's to get a diagnosis who after 6 months have finally come up with a confirmed diagnosis of Celiac Sprue. I was wheat free for a couple months, didn't feel all that much better I thought, but then the dr. placed me back on wheat to confirm the diagnosis. I feel horrible now - bloated, can't sit for long periods, arthritic pain everywhere, migrains to name a few...........and the nauseousness, ick. But on top of it all is depression. It is so hard to stick to the wheat diet, I'm having a hard time getting started on it again. Does anyone else ever feel hopeless and like it's not worth going back on the diet? I guess I'm wondering where I'll find the energy.

Lily

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First I want to say, I LOVE THIS NEW BOARD! Thank you Celiac.com!

Hi Lily!

We are the same age (o.k., I'm 36 I'll admit it, wierd how just one year on the other side of 35 and I feel like I'll be 40 any day now!) and I have also just found out about Celiac and all the symptoms matching what I have been going through for 20+ years now. I have been gluten free for 2 months and am now beginning to see the improvements begin. I am getting some muscle tone back, sleeping better, have a few hours here and there that I feel great! I have bad days more than not, but I can see the light at the end of the tunnel and for once it isn't an on-coming train! :P I have read by other posters that to go into remission takes from about 9 months to 2 years and you have to be 100% gluten free to heal.

I personally haven't found it hard to stick to the diet, of course I have been so sick so long I am just glad to have control. But another thing that has helped is that we went down and got rice flour, soy flour, potatoe flour, ect and started to play around with those, (they don't seem to bother me, although they bother some as I have read) so I don't feel like I am really eliminating anything, just replacing. I don't find it that hard to bake with alternative flours, it is just different. I mix them and that helps the taste. I read on another site that nut flours are the best to use, haven't tried them yet.

For a lot of people they do best only eating meat and veggies, and I think that is a good place to start until you feel a bit stronger. Then you can start adding things and see how you feel.

You WILL feel better soon, hold onto that and keep pluggin away, it is worth it. I just sent some articles from archives on this site to my family and I read one on how researchers found depression was common in Celiac patients due to malabsorbtion and that it was the primary reason for not sticking with the program. It is hard, and you crave those foods, but what choice do you have?

Hope this helps, others will be along shortly to add some support I know!

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Hi Lily,

I'm new to the message board but have found the support to be very encouraging (mostly because I know that I'm not the only one out there with digestive problems). I am 45 yrs. old and was diagnosed almost 2 months ago. I started to feel much better after going gluten-free. More energy and no more chronic dairrhea. HURRAY!!!! :) I have started to eat alittle more and have found that I don't feel as well

I guess I might be expecting healing to quick. I hear it takes time.

Also when I start to get alittle down in the dumps (depressed) I start thinking on all the good things that the Lord has given me and the fact that I don't have to take a bunch of medication. I consider this just a way for me to eat health.

I hope that you are encouraged by the friends that you have here.

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Yes Joyce, the best thing is having something you can do about our health and the next best thing is knowing we aren't the only ones...not that you would wish this on anyone! It can be depressing, but what if we all had to support each other because we had an autoimmune disease that was causing all this misery and there was nothing we could do about it? That is the situation I thought I was in for for the rest of my life, can't tell you how it feels to know it is almost over.

About your not feeling so good eating more things, I haven't read it yet, but the gal that wrote "Breaking the Visious Cycle" has of course researched foods that aren't absorbed while the intestines are damaged, and what she says makes sense. I have found I am doing well just being gluten free and don't seem to need to go as strict as she recommends, but I think it depends on how much your currently able to absorb.

According to her, it depends on the molecular structure....honey can be absorbed, sugar cannot, nut flours yes, almost all other grain flours (soy, rice, ect) no. So, I think that is something to look into for those still having problems.

Lisa

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Hi LisaB,

Thanks for the info. about other grains. I seem to be reacting to soy. Where did you purchase that book. I tried some of that fake soy sauce. Don't thinks that I will do that again any time soon. On Monday I"ll have my first office visit with the G.I. doc that did my biopsy. I have alot of questions for him. Are you taking any supplements.? My total iron was an 11 when I got diagnosed,so I take Slow-fe and a calcium supp. Not sure if I should be taking any thing else or not. I can't stand swollawing any BIG pills. :o

thanks again for the information.

Joyce

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Joyce,

I haven't purchased the book yet, I read a lot on the website the author has about it, her name is Elaine Gottschall. I just did a search for it and didn't see it, there are several out there on the subject if you do a search under her name you will see them. Let me know if you don't find what you want to know.

My Mom has found she can't do soy either, many people can't. On supplements, the things we take have been real life savers...digestive enzymes are very important, you can help the healing process along greatly in my view by helping your body in the digestive process until it can do it on its own.

Also Trace Minerals makes a great supplement called Electrolyte Stamina in powder form, add to water and it is much more absorbable than pills, has 72 trace minerals, all the major electrolytes, B vitamins, C, and more. The electrolyte thing is very important, since that will be a problem for someone with Celiac. That really gives both my Mom and I an immediate boost when we take it.

And magnesium is often a problem, there is a good article in the Scott Free sample articles about how Celiac patients sluff off calcium simply because they are low in magnesium and your body can't absorb or hold onto calcium without it so taking it alone can help get the balance back, I take Natural Calm, which again is powder form and you add it to hot water, highly absorbable. When I take it I feel like my nerves are suddenly cushioned, great stuff! Anyway that is all I can think of right now...I'm sure I'll remember something as soon as I submit this....hope this much helps.

Lisa

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LisaB,

I can't tell you how much better you made me feel, thank you!!! :D

Thanks to everyone's inputs here, I'm learning a lot. Now that I have the diagnosis, I'm going back to my nutritionist, she knows her stuff, she specializes in Celiac. I guess I was having a big mood swing this morning but am feeling better at the moment. I know in a few months, I"ll be feeling much better. Thank you again for the support :rolleyes:

Lily

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Lily,

Your very welcome :wub:

Keep us posted on what your nutritionist says, we all need all the good advice we can get! I'm so glad you found someone who knows what the heck they are doing, gives a person hope that people who need it are getting help out there.

Lisa

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Lily, I am so glad that your depression is going away, and I think you'll find yourself less and less depressed as your body reacts to being gluten free (I think you said your tests are over and you are now confirmed). I've been gluten free for several years, and want to mention that you may also be allergic to milk and dairy products, or such things as nuts, milk- related casein or whey, or other foods intolerable for you. Keeping a food diary and being careful to notice which foods cause you to feel good or to have reactions will aid you in feeling better. I've had to eliminate all grains, milk, dairy, egg whites and yeast, along with butter, chocolate, or even dairy substitutes, which contain casein or whey. However, I feel great! I've had symptoms of this disease since I was 8, and I'm now 59 and have more energy and stamina than ever. Best wishes to you as you learn what you can eat and what to stay away from. Welda

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Thank you all for your wonderful input. I am getting read to start a very strict diet with my nutritionist so I can figure out everything that I am allergic too. The supplements she has me taking are the following.

Magnesium Glycinate

Permeability Factor (to seal up my leaky gut)

Gastric Complex

Multiguard Vitamin with CoQ10

My Aminoplex (powdered amino acids)

P-5-P

The nutritionist says I'll probably always have to take the amino acids - It's in powdered form Joyce :).

I went off of them while they put me back on the wheat so I'm getting ready to start again. Until my body detoxes itself, I don't expect to feel tons of energy but hopefully it'll help. Another thing she said will help with energy is Ginger or Ginseng herbal tea. It kinda smells like dirt to me, but maybe you'll like it. I'm still in the stages of trying to get used to all the new stuff.

It can take up to 3 years to get your cells to regenerate, but I'm hoping to go with her best case scenario and feel like a new person in 6 months. Welda, thanks for the hope that I will have energy and stamina (something I've never had!). You guy's are great.

Lily

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Hi all,

I was diagnosed with Celiac Sprue a week ago today. And I am really scared, I just turned 40 in Sept and I have had this for over 15 yrs and doctor's kept telling me that it was IBS (irritable bowel Syn). I get migraines and they have been so bad this past year along with anxiety and panic attacks. I have been also Diagnosed with RA. I just want to get better or shall I say feel better. I do know that caffeine and chocolate as well as diary products really bother me. So I try and stay away from them. I am going to a Dietician on Jan 22 and a Gastro Dr on Jan 12. I had to go to the emergency on Tuesday of this week found out that I have Kidney stones which thank god I passed. If you have any info for me on how to deal with this disease it would be greatful.

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dhickey,

Don't be scared, your on the right road now!

Coffee really bothered me too until I switched to organic. Chemicals are a huge problem for everyones health, but especially us...our bodies can't handle the extra toxins, we have an overload already of things for our bodies to detoxify. Dairy is one of the first things that become difficult to digest when you intestines become damaged so no shock there, the info I have read indicates that once you heal you will probably be able to try dairy again and see how you do with it. There is so much good info on this site that would be comforting for you to read. I mentioned magnesium earlier in this thread and something I read I believe on the site for the Natural Calm magnesium I take or in the archive article I read mentioned arthritis (sp) being linked to that phenomenon of the body losing calcium because of a magnesium deficiency. The unabsorbed calcium would then build up in places it shouldn't, like the joints...I seem to remember RA viral right? Not sure how that all fits together but we are wide open for infections of all kinds and our bodies are going to the dogs so there are going to be all sorts of secondary problems when you have gone any amount of time with Celiac. Anyway, my joints are soooo much better and I have only been gluten-free for 2 months, they had been getting worse and worse since I was about 10 years old.

Long story short, it isn't easy, but now you have hope.

Lisa

p.s. Kidney stones were mentioned in whatever it was I read to as being caused by the lack of magnesium, again calcium being in the wrong place.

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Hi to all on this site i am new here let me tell you my story i was diagnosed about 14 months ago with celiac i had the test and it came back positive i have been ill for about 20 years i couldnt understand how everyone else was able to do the things i couldnt i got tired quickly and was alway wondering what was wrong i had many tests thinking that i had something wrong with my overies and such but nothing came back i even had my appendix removed just in case it was that finally last year i came to the end of my teather when i lost my dad to cancer in a short time it was horrible not getting any sleep and then depression set in when i collasped and couldnt even get out of bed did care weather my kids went to school or not not caring about anything i was rock bottom thinking there just isnt anything left for me then my doctor perscribed antidepressents which helped a bit but i was still getting quite frustrated that i couldnt keep up then i went to him and said i have had it then he said hang on i will do some tests i was run down anemic and everything else he could find i was starting to think i had cancer like my dad then he rang my told me that i had celiac desease i read everything i could on it went to a dietition and started to feel a little better but that after 6 months i still wasnt back to were i should be so then my doctor did my iron test and i had 3 a normal person should have about 30-70 so i had a infusion of iron and now i am getting there i have my bad days but i still feel depressed mind you i went off my pills when i found out what i had we have found out since that my dad must have had it as he died of the symptoms he drank a lot of beer he had osophacus cancer

i hope my story helps someone out there there is light at the end of the tunnel just hang in there and if in doubt leave it out is my motto

:rolleyes:

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I'm really proud of all of you. You all seem so cheerful and brave.

I'm 26, and I was diagnosed last March after being sick for as long as I can remember. I don't feel as cheerful and brave as all of you sound. I've been gluten-free since April, and I still feel horrid a lot of the time. I feel lost and alone more often than not (I suppose that's the depression that some of you mentioned), and I don't know a soul who is going through this stuff.

My family and friends try to help, but none of them quite get it. I don't blame them at all, they don't have to worry about these things in their own lives so they shouldn't have to worry about them in mine.

I'm always tempted to "cheat" though I rarely do. I would kill for a pizza, but I've behaved.

I'm sure everyone goes through this. The doubt and fear, the feeling left out of everything. I avoid office parties, and my husbands work picnics, and I even felt left out of my own family reunion...there's nothing there that I can eat, and I just don't want to be tempted because I feel weak and if I behave I feel as though I'm always alone.

On top of everything I have a lot of added stress from work, the 6 people in my family who have died over the past year, and that type of thing. Some times I just want to be normal more than I can bear....

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dhicky.......I too had kidney stones which finally made the dr. listen to me and run some tests. It's taken almost a year, but I now have the hope to work at getting better. With the depression I have to keep looking forward to something.

Filititi....I know too how you feel. I have a totally wonderful family, an awesome husband, etc. I was on antidepressants for several years, but just never felt that great so I took myself off of them. It's hard to give an explanation to outsiders how depressed you are when there is absolutely nothing wrong with your life (except your health). Most people look at me living in nice house, great marriage, nice job, good kids and think I'm just crazy for not appreciating what I have. I totally appreciate everything I have and am hoping the depression goes away as my body heals itself. It's really great to find others on here who experience the same things isn't it? It's really made my New Year's.

Lily

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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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:) 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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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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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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: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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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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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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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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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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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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