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


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38 replies to this topic

#1 Lily

 
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Posted 01 January 2004 - 08:12 AM

[FONT=Optima] 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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#2 Guest_LisaB_*

 
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Posted 01 January 2004 - 09:56 AM

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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#3 joyce

 
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Posted 01 January 2004 - 10:28 AM

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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#4 Guest_LisaB_*

 
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Posted 01 January 2004 - 11:36 AM

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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#5 joyce

 
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Posted 01 January 2004 - 02:27 PM

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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#6 Guest_LisaB_*

 
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Posted 01 January 2004 - 04:08 PM

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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#7 Lily

 
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Posted 01 January 2004 - 04:10 PM

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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#8 Guest_LisaB_*

 
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Posted 01 January 2004 - 04:20 PM

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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#9 wclemens

 
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Posted 01 January 2004 - 05:16 PM

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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#10 Lily

 
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Posted 02 January 2004 - 05:54 AM

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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#11 dhickey

 
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Posted 02 January 2004 - 03:48 PM

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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#12 Guest_LisaB_*

 
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Posted 02 January 2004 - 04:10 PM

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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#13 midnightjewel40

 
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Posted 02 January 2004 - 07:37 PM

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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Hope you have a great day
Jacque.
my 15 year old and i are both celiacs

#14 filititi

 
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Posted 02 January 2004 - 09:25 PM

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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#15 Lily

 
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Posted 03 January 2004 - 04:53 AM

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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