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Celiac And Ic


jbaker

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jbaker Newbie

Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane


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Chiana Apprentice

When I eat gluten I have the symptoms of IC. After several weeks of eating gluten-free it resolves. Are you sure you're not getting any contamination anywhere?

A lot of those drinks that are gluten-free are really high in protein which is hard on your kidneys. Have you tried just buying a juicer and doing a carrot-spinach-strawberry mix, etc?

MitziG Enthusiast

Hi Jane, I hope you got the new PM where I told you the name of the product. Other than that, all I can offer you is hope. My IC has improved dramatically since giving up gluten and dairy to where most days I dont even think about it. It may take alot of experimenting on your part to find out what works for you, but almost always, IC can be controlled to a reasonable degree by diet. I know I mentioned comfrey tea in another post to you, do give it a try. It provides instant relief during a flare.Feel free to PM me anytime that you need some moral support form someone who has been there. I know how depressing IC can be!

Skylark Collaborator

I'm sorry to hear you're so ill. I was tested for IC once but luckily I didn't have it. My pain turned out to be endometriosis.

Ensure is probably what you need and it is gluten-free. Ensure is a medical drink designed for people who aren't eating very well. It's much better than Slim-Fast or other diet drinks because it's designed for complete nutrition rather than weight loss. You can double-check with your doctor if it's safe for your kidneys.

mommyto2kids Collaborator

I was misdiagnosed for 3 months as Ic before my dh's best friend helped us discover I had celiac and not ic. Please join the ic network. They are kind and helpful, just like here.

  • 2 weeks later...
RollingAlong Explorer

You could try Neocate

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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