Just curious

[IDreamInColor]

What happens to people who never discover the gluten or other food intolerances which are linked to MC? I mean, the way it sounds is that most doctors do not recognize gluten as a problem (mine own doctor included.) So what happens to people who develop MC, but never know about food intolerances, do they just stay sick forever and just deal with it?

[Linda in BC]

Yup... that is exactly what I did... for 12 years. No one even suggested Entocort. Pepto Bismul and Immodium were my only friends.

Only when I found this wonderful board and its angels, did i get help.

Linda

[ant]

Dear Idream

I think they are told they "you just have to deal with it" and if they do not go into spontaneous remission....well I dread to think......

Experience from this board shows that there is hope to live a more normal life even if it takes a very long time with quite a few ups and downs.

Best Ant

[Foxnhound8]

My Dr. just looked at me like I had two heads when I complained she had not given me a heads about about how much my diet impacts my symptoms. "Huh?" she said. "We don't do diets, we just hand out pills." When I told her about this group, she just said it was nice I found a "support group".

foxnhound

[Joefnh]

"We don't do diets, we just hand out pills."

Sad but true, I think that says it all.

--Joe

[Polly]

Hi Dream,

It IS scary, isn't it? I suppose many just go continually downhill over the years, showing the long term effects of gluten damage (everything from neurological damage to increasing diagnoses of autoimmune diseases to psychiatric disturbances). There are even reports in the literature of people who were longterm residents in psychiatric facilities and were eventually found to be there because of gluten effects. Rare but true.

How are you doing now? Are you mastering the diet?

Love,

Polly

[IDreamInColor]

How are you doing now? Are you mastering the diet?

Hi Polly, thank you for asking. My diet...this disease has taken all the joy out of eating, I have been eating very very little. I haven't had a taste of gluten since Thanksgiving when I ate that dinner roll. I had a bit of a flair up day yesterday, but I contribute that to stress. The agoraphobia, panic, and depression is spiraling out of control. I just don't want to eat. And I know how unhealthy it is, I'm only taking in about 400-500 calories per day. Graves disease, colitis, agoraphobia, panic, and anxiety has zapped my energy, and I haven't had the energy to cook, so I just eat a piece of udi's toast, or a banana or soup.
I've got to get myself in order here, I'm not liking myself so much these days. I'm becoming very withdrawn.

[hoosier1]

Idream,

Like Linda and the others, I was told it was in my head, that it was IBS, and to manage it (deal with it) with the following:

1) imodium
2) lomotil
3) Questran
4) Colestid
5) Bentyl
6) Calcium
7) Hyscomine
8) Flora Q
9) Effexor
10) Amitryptaline
And more...

All the while, the damage to my GI continued, IMO.

Though I am not where I want to be yet, I do believe that diet, exercise, sleep, and healthful (lower stress) living is key. A lesson from Gabes...

Rich

[MaggieRedwings]

Morning Idream,

I know you have a list of serious conditions there but please do not ceasing to enjoy eating. If you make it a challenge to try things other than toast, banana or soup you will feel much better - I guarantee it. I have many, many intolerances and always considered it a challenge to make good and healthy food even though I had to put aside by religious beliefts and start consuming meat. It can be done and for your well being it is necessary for you to take the first steps.

Sorry to preach but just because one might have to be GF, SF, DF or whatever else - you can enjoy eating.

Maggie