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Gracey

Does anyone else have a burning and cramping sensation?

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I've been diagnosed with celiac a few months ago I thought that I had it for a while now it runs in the family.  I found out I had it a few months back when I ate chick fi a sandwich and had to go to the ER because I couldn't stop throwing up. They didn't know what it was and it took a few more months for anyone to take me seriously and find out what's wrong

 

Anyways I've gone gluten free now and I still have pains whenever I eat ANYTHING. It's cramping and burning and feels like my stomach is on fire.  I also have pains...below which I'm not sure what it is. 

I ate a salad today, and now i'm in pain the salad had cheese, onion on it no dressing or any breading...

Maybe I should stay away from cheese, I think it may be lactose and can't eat soy.

 

I ate some gluten free chex the other day with rice milk and ended up in pain..

I don't know maybe it's more than just celiac. I don't know if this is normal for people just going gluten free...maybe there was some hidden gluten in those foods. I don't know.

 

All i know is that this pain is hurting me and I'm tired.

Thanks for reading...this is my first post.

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Hi Gracey

 

This definately doesn't sound good. You need to go see your doctor right away. Ask to be referred to a gastrologist. Sounds like to start you should have a colonoscopy and a gastroscopy. Definately need to figure out what is causing the pain. Definately sounds like more than celiac. I wish you all the best. 

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I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising?

I read somewhere here rice milk may not be a good option. 

Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up.

I too reacted to lettuce the other day like I was ingesting glass.

My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine. 

I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks. 

Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.

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It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.  

Here is some information about rice milk:

https://www.verywell.com/is-rice-dream-gluten-free-562354

Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.  

Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth? 

I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).  

If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination).

I hope you feel better soon!  

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Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 

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8 hours ago, Froggymom3 said:

Hi Gracey

 

This definately doesn't sound good. You need to go see your doctor right away. Ask to be referred to a gastrologist. Sounds like to start you should have a colonoscopy and a gastroscopy. Definately need to figure out what is causing the pain. Definately sounds like more than celiac. I wish you all the best. 

Thanks and I'm seeing a doctor in three months may have to make it sooner. 

 

Thanks for all the replies.

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7 hours ago, cyclinglady said:

Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  

I'm not sure I just had the endoscopy, and I've had a  songram. 

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Gracey,

It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.  

So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.  

Hugs!  

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