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Ugh So Frustrated!

plumpossum

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plumpossum Newbie
plumpossum
Posted

Ok, here's my story, I'm hoping that someone can relate!

Last year I suddenly became sick with the worst heartburn & indigestion of my life. I also began having stabbing pains in my right side. My mother had a Sphincter of Oddi deformity, which the doctors had misdiagnosed as a bad gallbladder for seven years before she went into pancreatitis, and while she was in surgery to have her gallbladder removed, they realized that the real issue was the deformity. So when I started having side pains, indigestion, and heartburn, I immediately thought I probably had the same thing. My doctor became convinced it was my gallbladder (mind you, my mother had no gallstones.) During the same time I also developed Psoriasis on just my left elbow- no where else. My doctor performed the following tests:

Ultrasound

CT Scan (which sent me into anaphylaxsis...)

Upper GI

HIDA Scan

All came back absolutely normal. The doctor prescribed Aciphex and Levsin.

In October I had a bout of gastroenteritis that had me in the emergency room being rehydrated and pooping blood.

Shortly after the gastroenteritis I went on a low-carb diet and felt great, but gave up when I got another bout of "stomach flu." However, my previous symptoms of side pain, indigestion, and heartburn disappeared and I stopped taking Aciphex.

On July 6 I thought I ate something bad, had the flu, etc. My main symptoms were heart palpitations, chills and then sweats, nausea (all day, every day), indigestion (I've been sleeping sitting up for the past month), chest, right side, and left side pain. I had diarrhea maybe four or five times over the last month.

My doctor finally saw me. He said that there was no reason to believe I had gallbladder issues because of the tests I took last year... He then gave me the old standby diagnosis: IBS. If I had IBS, wouldn't my main concerns be diarrhea or constipation? He then refilled my prescriptions of Aciphex & Levsin, which does not make sense for IBS at all considering one is for reflux and one is a muscle relaxer. He performed a CBC blood test, a test for infection/inflammation, and a Celiac panel. The first two came back absolutely normal (pancreatitis would've shown on the second one) and the Celiac panel should be back on Wednesday.

About three months ago I went to an allergist. Lately my seasonal allergies seem to be fading away (hooray!) and new intolerances have appeared. For instance, I suddenly welled up with tears and started itching uncontrollably around cats and rabbits. The allergist tested for a wheat allergy and the result was negative.

I'm at my wit's end!!! I cannot eat anything without getting sick. Nothing seems to be helping any of my symptoms. My PCP told me to eat a low fat/protein high carbohydrate diet to treat IBS and to take the medicine that I am on and is not working. I'm glad he had the good sense to test for Celiac, but man...I'm in pain NOW. I feel like there's nothing I can eat, I'm afraid to eat wheat, protein, or fat. In the last week I've lost 10 pounds and I'm starving but cannot eat. I'm having to forcefeed myself to maintain 900 calories and feel absolutely nauseous anytime anything enters my mouth. I'm exhausted.

Does Celiac just happen all of the sudden like that? I never had digestive issues before having my son 3 years ago, and I know that IBS can appear after a major biological change like that, but does Celiac?

Outside of the stuff that is just happening now, I also have ridged nails, and the aforementioned Psoriasis. There is a strong history of mental illness (manic depression) in my immediate family. I know these are all risk factors for Celiac.

I bought some gluten free foods, hoping that that will at least help my body chill out a little. But I am just so frustrated!!

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Ursa Major Collaborator
Ursa Major
Posted

If you have the celiac disease genes, it is entirely possible that your pregnancy and giving birth could have triggered active celiac disease. A lot of people here were fine before having babies.

In which case eating low fat/low protein and high carb is about the WORST possible diet for you! In fact, that kind of diet isn't good for anybody.

You felt better on a low carb diet. That is very telling. I suggest, now that you've had your blood test done, what stops you from starting on the gluten-free diet? Of course, if you want to have an endoscopy with biopsies done, you will have to keep eating gluten until after that is done.

But you sure sound like you have celiac disease.

plumpossum Newbie
plumpossum
Posted
  • Author

My doctor acknowledged that Celiac is often misdiagnosed as IBS, and I've also read a lot of people here saying they were diagnosed with IBS. Is there anything else that is often confused with Celiac? Do stabbing pains in the sides come with Celiac?

I'm testing out gluten free and low to no meat for now (I have to do a stool sample next week and have to be off all redmeat and have minimal white meat.) My diet at the moment is pretty much Rice Chex, Rice milk, Gluten free waffles, and vegetable soup.

ShayFL Enthusiast
ShayFL
Posted

Some rice milks arent gluten free even if they say so. Look for "Barley Malt" and call if you have too. I forget which one is NOT gluten-free because I dont drink rice milk.

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