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missyf

Chronic Abdominal Pain

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I was diagnosed with Celiac a little over 2 years ago. Since then I have still had severe abdominal pain and want to be rushed to the ER at times. Four months ago, I had my second endoscopy to check for healing. I never had the blood test done. The healing came back a little better?????? My GI told me that because it had been over the 2 year mark, that was as good as it was going to get and sent me back to my family physician. She is now treating me, with what she calls, the worst IBS she has ever seen. I have been on numerous different medications and none are helping. Bentyl worked for about a month, I am now on Librax, 1 pill every 4 hours, after 2 hours, the pain returns.

Does anyone have chronic abdominal pain. I know my Celiac pain is different feeling pain then my IBS. I keep telling her that it isn't where my IBS pain typically is and that it doesn't feel the same. I am 36 yrs old and have had IBS diagnosed at 20.

Any suggestions on what to do next, where to go, anything that helped others.

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I would give up casein for 6 weeks and see if u feel better, if you are still in pain in those 6 weeks then take away casein and soy and see how you feel. i would almost bet that it is casein or soy that is keeping u sick.

Are you sure you are 100 percent gluten free, even in personal care products. Coud you be getting cc by anything? Do you go out to eat alot?

paula


gluten, casein and soy free

on low carb/low sugar diet

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I would give up casein for 6 weeks and see if u feel better, if you are still in pain in those 6 weeks then take away casein and soy and see how you feel. i would almost bet that it is casein or soy that is keeping u sick.

Are you sure you are 100 percent gluten free, even in personal care products. Coud you be getting cc by anything? Do you go out to eat alot?

paula

I am a freak about gluten because of the constant pain, and I do not eat out ever. I will try the caesin and soy thing though.

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What about parasites? Check out www.humaworm.com.

Or bacterial dysbiosis?

I had both .... You can Google them to see if they seem like they may be a problem for you, too. With your intestines being so damaged from celiac, you're bound to have other issues along with it .... your ongoing IBS shows that you do .... it's just a matter of finding out what it is.

It may take some more alternative type medicine to bring you back to health ... conventional medicine seems to be telling you you are as healthy as they can get you ... they are medicating your symptoms.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Have you had a colonoscopy? (Is that how your IBS was diagnosed?)

If I were having SEVERE stomach pains--- I would first be requesting a total GI work-up -==including the colonoscopy and stool sample testing === for starters.---

If you've already done that and everything is o.k. (except for IBS) I would next try to track down any food allergies, or food intolerances ---- ( as others have suggested--- )

IBS can be difficult ---- but I wouldn't think it would be causing SEVERE pain.

Keep looking for the CAUSE------- And I hope you are feeling better soon.


CeeCee

Allergic to: wheat, peanuts and Penicillin

1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006

"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

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Missy,

I have chronic abdominal pain as well. I am 99% sure that it is attributed to Sphincter of Oddi Dysfunction in my case. Look it up to see if the symptoms apply to you. It could also be problems with your gallbladder, liver, pancreas, etc. Important questions that need to be asked: Where is the pain located? How long does it last when it comes? Is it sharp, dull, burning, stinging, etc? Is it accompanied by any other symptoms?

By the way I would never accept IBS as a diagnosis. It's the mark of a lazy doctor. There's always a reason as to why your digestive system isn't working right. Doctors love to treat the symptoms and not the cause. Don't accept that. I hope you feel better soon. Good luck,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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I was diagnosed with Celiac a little over 2 years ago. Since then I have still had severe abdominal pain and want to be rushed to the ER at times. Four months ago, I had my second endoscopy to check for healing. I never had the blood test done. The healing came back a little better?????? My GI told me that because it had been over the 2 year mark, that was as good as it was going to get and sent me back to my family physician. She is now treating me, with what she calls, the worst IBS she has ever seen. I have been on numerous different medications and none are helping. Bentyl worked for about a month, I am now on Librax, 1 pill every 4 hours, after 2 hours, the pain returns.

Does anyone have chronic abdominal pain. I know my Celiac pain is different feeling pain then my IBS. I keep telling her that it isn't where my IBS pain typically is and that it doesn't feel the same. I am 36 yrs old and have had IBS diagnosed at 20.

Any suggestions on what to do next, where to go, anything that helped others.

After 2 years your villi should be more than 'a little better'. Have you checked every med you are on, either OTC or script for gluten? You mention Librax, I was on that for years. It was my doctors drug of choice for me because it contains Valium and he was convinced I needed a tranquilizer and refused to take one. For me this drug did next to nothing although it does help many folks. Be aware though that it is not a drug you can stop suddenly, you will need to taper the dose if you decide to stop taking it. Also it does react with a lot of other drugs including antiacids so you may want to google it for more info. I stopped it along with all my other drugs before my elimination diet and never needed to add any back in.

I agree also that you should consider removing casien and soy from your diet for a bit. It may be tough at first but when you are feeling better then you can add them back in and see of they may be a problem. You also may want to go with naturally gluten-free foods for a bit if you are not already. Many mainstream foods are not as safe as they look due to hidden barley or CC issues.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Can you describe where your pain is? I have just come out of the hospital due to chronic pain and they said there was no apparent reason for the pain.

I have steady pain in my lower left front/side. It does not go away and does get worse if I eat.

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