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Giving Up Celiac Diet

happy4dolphins

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happy4dolphins Enthusiast
happy4dolphins
Posted

HI, I decided on Saturday I"m done with this. It's driving me insane and I can't take it anymore. I had gone to a Celiac meeting on Thursday and others there said they couldn't believe what a huge change I was doing w/out a positive diagnosis. (IT was the Rheumy who suggested trying it since I've had an inflammed stomach linning for quite some time and the tissue sample from the endoscopy came back neg. in the summer time last year.)

So, I decided to stop doing it.

Nicole

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cgilsing Enthusiast
cgilsing
Posted

Hi Nicole -

I'm sorry to hear that you are leaving us..... :( I understand though, given you don't have a possitive diagnosis. Did you not have any luck as far as feeling better is concerned either? Celiac or not, I know you must have problems that led you here. Whatever it is, I urge you to persue a diagnosis for what is making you sick. Good luck to you! I hope you find some answers, and start feeling better! {{{{{{{{{{{hugs}}}}}}}}}}}}}

Christine

Rusla Enthusiast
Rusla
Posted

If it is any consolation to you the first time I tried without diagnosis I didn't last very long. I figured it couldn't kill me. Now I know different and I pursued the doctors with a vengence because things were going more wrong than before. I just hate to think you may be doing damage to yourself or feeling worse if you go back. However, it is your decision and I wish you the best of luck and sad to see you go.

Jnkmnky Collaborator
Jnkmnky
Posted

I don't have a pos dx either, but just my experience is enough. My endo pain is gone completely and I had a few crumbs of gluten several weeks ago and endured joint pain for a week. NO thanks!

covsooze Enthusiast
covsooze
Posted

Nicole, I really feel for you - I know I couldn't do this without a positive diagnosis. I really hope you manage to find out what's making you sick, and soon.

(((((((hugs)))))))

Susie x

KaitiUSA Enthusiast
KaitiUSA
Posted

So sorry to hear you are quitting the diet. Has it not helped at all? Have you even tried being 100% gluten free with no cheating?I wouldn't just quit because its hard because we can have alot and its easy once you know the ropes.

happy4dolphins Enthusiast
happy4dolphins
Posted
  • Author

Kaiti and others,

Thanks so much :) Yes, my last stretch of being gluten-free was for three weeks, other then that, I was able to go a week 1/2 here and there since Nov. 2005. I was telling my mother in law today, maybe I'll have a better attitude next week.

RASH!!@@@ I have a very bad rash on my inner thighs and have had it for the last three days or so. I'm looking in to the der. section of this board.

Nicole

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Rusla Enthusiast
Rusla
Posted

Nicole, get over to the doctor and have him do a skin biopsy. It does not hurt all he has to do is scrape the skin around the rash. If not have him refer you to a dermatologist and tell him to do it at urgent. I am sure it hurts a lot (mine have) but I would embellish it to get the message home.

Guest BERNESES
Guest BERNESES
Posted

Nicole- I'm sure you know this, but three weeks maybe isn't enough to ntice a difference. Whatever you decide, I hope that you find out what's going on and better health in your future. I did it for over a year without a diagnosis, but my body was CLEARLY telling me what was going on. Regardless, there were many times I thought I was insane. Best to you, Beverly

ebrbetty Rising Star
ebrbetty
Posted

I'm 3 months in and still having troubles, maybe you need to give it more time..I've been told it can take up to a year

good luck

Stardust Valerie Newbie
Stardust Valerie
Posted

At least once a week I feel that way. I just want to quit. I have been gluten free for 2 1/2 months. I still get tired and the pain in my body comes back once in a while. But overall it is so worth it. I generally feel better. I am much more aware of my body and how it reacts to food. All food. I am also a vegetarian, which can make it even more interesting. I have also noticed that I am experiencing more sensitivities to other foods. Esp. soy. Maybe there is something else in your diet. I have heard from quite a few experienced celiacs that sometimes you need to eliminate all grains, etc. Kind of stick to fresh fruits, vegetables and a good source of protein. I have chosen to eat fish again. What kind of tests have you taken for diagnosis?

Guest nini
Guest nini
Posted

the first time I tried to go gluten-free, a friend had dx'ed me based on me having the same symptoms her mom had as well as several miscarriages... when I found myself pg after being gluten-free for a few months, I stupidly let my OB/Gyn talk me out of the diet because he said it was "bad for the baby" well, I wish I'd listened to my "gut instinct" (yes pun intended) and stayed gluten-free... but I did eventually get the positive dx from a Dr. after over 3 years back on gluten, and having it very nearly kill me.

I hope you can get the correct dx that you need and please don't give up. Trust your instincts and listen to your body. I really wish I had done that the first time around. But you are right, the diet can be really frustrating and difficult, but once you get the hang of it, it does get easier. You really have to give it at least six months before you can really make a judgement if it's helping or not.

Good luck and please keep us posted.

Stardust Valerie Newbie
Stardust Valerie
Posted
the first time I tried to go gluten-free, a friend had dx'ed me based on me having the same symptoms her mom had as well as several miscarriages... when I found myself pg after being gluten-free for a few months, I stupidly let my OB/Gyn talk me out of the diet because he said it was "bad for the baby" well, I wish I'd listened to my "gut instinct" (yes pun intended) and stayed gluten-free... but I did eventually get the positive dx from a Dr. after over 3 years back on gluten, and having it very nearly kill me.

I hope you can get the correct dx that you need and please don't give up. Trust your instincts and listen to your body. I really wish I had done that the first time around. But you are right, the diet can be really frustrating and difficult, but once you get the hang of it, it does get easier. You really have to give it at least six months before you can really make a judgement if it's helping or not.

Good luck and please keep us posted.

I like your quote about MD!!

Guest nini
Guest nini
Posted
I like your quote about MD!!

LOL, thanks! It is a shame isn't it!

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