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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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  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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