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Doctors, Celiac/gastroparesis....and Ibs Ugh!

Jaimepsalm63

By Jaimepsalm63
in Coping with Celiac Disease

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Jaimepsalm63 Rookie
Jaimepsalm63
Posted

OK, first I'm going to apologize...this is a major whining moment for me, but I post it here because no one else understands or gets it including most doctors!

I have Celiac...that's a given on this forum. I have gastroparesis, bummer, but I'm learning not to eat my food and to drink most of it instead.

I'm so sick and tired of getting sick to the point of needing to be rehydrated in the ER and the doctor there telling me I have irritable bowel syndrome or stomach flu. It's getting old! My husband saw me at 1:30 in the morning listening to some no nothing doctor tell me that I had stomach flu, with me kindly saying it's been like this for 4 years, only to have him then tell me it must instead be IBS.

Can someone tell me why when we people who live with the problem like celiac and/or gastroparesis are given a blanket answer of IBS? Am I alone on this? I was diagnosed over 10 years ago with IBS only to have my new GI doctor say I didn't have it and was diagnosed with it because the other doctor didn't know what else to do and didn't want to hear me anymore. I was then given a new set of tests over 4 years ago and behold....CELIAC and then the gastroparesis over a year ago.

Jake, my husband, listened to me just cry on the way home telling him I'm tired of feeling sick all the time. I'm really tired of doctors telling me it's IBS. I'm tired of my friends looking at me saying I look fine, so what's the problem. I'm tired of waking up at all hours of the night and all hours of the day running to the toilet to throw up. I'm tired of being afraid of now leaving the house because I'm never sure if I'm going to throw up (I actually carry a bag next to me in the truck). I'm tired of this stupid thing not being on a schedule! It comes and goes....and it's not the lower end I have problems with....it's just keeping food down.

Ok, whining moment done.

Thank you for letting me whine and vent.

Jaime

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mushroom Proficient
mushroom
Posted

Oh, I do feel so sorry for you. You're right, there is no one else to tell except the good folks here on this forum how much you are suffering. No one else gets it! Thank goodness we have this place to let off steam and vent our frustrations. This IBS b*##^@*t has got to stop. There is no such thing!!! I "had" that diagnosis for more years than I can count, only it is NOT a diagnosis and someone should tell these doctors that.

Hope you find a real answer soon. :wub:

Jaimepsalm63 Rookie
Jaimepsalm63
Posted
  • Author

Thank you mushroom!

I already know what the problem is and know that nothing at this point is going to help me....except the drugs that cost $25 a pill after the insurance is applied and was told I could take it every 4 hours. So, with that costing so much (and it doesn't work anyway), guess how much I take because I have three boys to feed.

Just to have this forum is a blessing. I don't feel like a freak of nature or someone who's "seeking attention". (I've heard that one too when I was little and always complaining of stomach pains.) I had one doctor tell me it was all in my head.....I'm thankful (kind of) that I had to throw up at that point. He changed his mind and said he thought there might be a problem. Of course it was the usual IBS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I HATE that dx!!!!!!!!!!!!!!!!!!!!!!!!! Can you tell?

Ok, whining has turned into anger when mentioning those 3 letters put together.

Thank you again mushroom....I knew someone here would understand.

Jaime

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