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Secondary Diagnoses

SUZ42

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SUZ42 Explorer
SUZ42
Posted

HI,

I am in the process of being tested. Results should be in soon. I can't wait for the results, pos or neg. At least I'll know. If it turns out pos I can stop searching for answers and if it's neg, at least I'll have something to mark off the list of possibilities. I hate to wish for a positive dx, but I admit I do. At least then there will be something I can do about the symptoms I have.

Anyway, my question for everyone is, if I turn out to have celiac, or gluten sensitivity, and go gluten free, and I feel better, will I be able to stop taking the medicine I've been on to treat my symtoms? Such as B12 inj, iron, cymbalta and nexium. I hate taking all this stuff. So just wondering if anyone has been able to stop taking medicine and control symptoms by diet alone?

Suzanne

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Lisa Mentor
Lisa
Posted
HI,

I am in the process of being tested. Results should be in soon. I can't wait for the results, pos or neg. At least I'll know. If it turns out pos I can stop searching for answers and if it's neg, at least I'll have something to mark off the list of possibilities. I hate to wish for a positive dx, but I admit I do. At least then there will be something I can do about the symptoms I have.

Anyway, my question for everyone is, if I turn out to have celiac, or gluten sensitivity, and go gluten free, and I feel better, will I be able to stop taking the medicine I've been on to treat my symtoms? Such as B12 inj, iron, cymbalta and nexium. I hate taking all this stuff. So just wondering if anyone has been able to stop taking medicine and control symptoms by diet alone?

Suzanne

Hey Suzanne:

Welcome! I realized that a positive diagnosis was a good thing as the alternatives were frightening. The diet is a pain and difficult in the beginning. The diet can be easily adjusted to but the learning curve is pretty steep. When you learn to read labels, it becomes a whole lot easier.

To answer your question...it depends on the amount of damage to your intestines. It does take a while for the villi to return to normal and absorb the food you take in. After a year and a half, I occasionally need a B-12 short just for a boost. Some feel better in a matter of days and other like myself took many months to get over my fatigue. I am still not 100%.

If you go totally gluten free, including changing your shampoos, toothpaste, lotions, lipsticks, etc, you body will let you know if you need supplements.

Good luck with your result and please let us know. There are some really great people here that know more about Celiac than most doctors.

Let us know how we can help.

Lisa

CMCM Rising Star
CMCM
Posted

My mom nearly died 40 years ago from celiac disease....no one could figure out what her problem was...they tested for everything and concluded it was all in her head. Finally she met a doctor who knew about celiac disease. At that point, she weighed 80 lbs (her normal weight would have been 115-120). She was sick continuously, couldn't eat, was in terrible shape. They did a biopsy, and said her intestinal lining was smooth like a billiard ball, no villi left at all. Her stomach lining was nearly destroyed too. She went on a 100% gluten free diet (no fun foods in those days!) and felt better within a few days. 3 months later she had a second biopsy and they found her villi were already regenerating. Within 6 to 8 months after diagnosis, she was normal weight again. She got B12 shots for a time (I don't remember how many/how long), but beyond that, I don't think she got them except perhaps occasionally. So she's now 86, in great health, and never has a problem in all these past 40+ years unless she gets glutened accidentally (which makes her horribly sick).

I've asked her if she misses breads etc., and she says no, no really.....that none of those things was good enough to be worth getting so sick. The one thing she wishes she could have is oatmeal, but she's afraid to try it for fear of getting sick.

So there's good news after diagnosis, as long as you keep to the diet! :P

Nancym Enthusiast
Nancym
Posted
If it turns out pos I can stop searching for answers and if it's neg, at least I'll have something to mark off the list of possibilities.

If only it were that easy...

So many of us have had positive health rewards from following a gluten-free diet regardless of our testing outcome, I'd really encourage you to try it yourself, even ifyou get a negative result.

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