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Does Anyone Feel Like This?
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18 posts in this topic

Hey all... I've been gluten-free since Dec. 24, 2003... so not even a full month. During my diagnosis time... when I first started feeling sick ( about 3 months... began feeling sick around september 2003 ) I had pain about 2 or 3 inches above my belly button / navel. Since going gluten-free, I've been doing my best to avoid any accidents, and some days I feel fine. However, other days I get the same pain above my navel... I don't know what to do. Does that mean I've slipped up and had something with gluten w/o realizing it? And what is this pain from? Does anyone know? I would really love to know what causes it... I know that my small intestine has total villous atrophy ( all the villi and micro villi have become flattened completely ) but I don't see how that could cause me this pain. To describe the pain, its an incredible soreness that hurts w/o pressing down on the spot and when I do apply pressure, it hurts even more. Being gluten-free is a challenge, and I am trying hard to stay positive, but it's just so hard to remain upbeat when I'm still in such pain. Please let me know if anyone experiences such pain a bit above their navel and if you know what causes it and what I should do, please let me know :(

Thanks everyone,

~Newbie :(

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Newbie

It could very well be that your intestine is in so much distress that it is causing this pain. Not everyone's body reacts the same to the ingestion of gluten. I've personally never had this pain you've described however if your really worried about it talk to you G.I about it.

Hope you find what's going on!! :o

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Hi, Newbie!

I've had the pain you describe, and I believe it is related to gluten consumption. One time, many years ago when I was in college (WAY before I knew I had celiac disease), I got this pain so intensely that they kept me at the health center for observation in case I had appendicitis--and they never did find a good reason for it! My father, too, has been hospitalized in the past for unexplained severe abdominal pain.

I'm not sure exactly how the pain is triggered, but I suspect that the upper part of your small intestine is getting badly inflamed by gluten that you are accidentally eating. You'll want to scrutinize your diet for any sources of hidden gluten, or maybe post a list of the foods you have been eating so we can all have a look with you.

I hope you find the culprit in short order!

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it could be from a 'slip up' i know for my grandma she had it so bad that she couldnt even have fries just in case they used the same oil for something with a batter like chicken fingers or fish, she would get very sick even though it seemed okay to eat

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Hi Newbie,

You have a lot of damage in your intestines, and it takes some time to heal. This is not to say that you will experience this pain for a long time, but you might continue to experience some symptoms for a while. If the pain is severe, then you should consult your doctor. Have you also stopped all dairy? It would be wise to do this at least for a while. Since your villi are flattened then you don't have enough lactase to digest dairy right now. The villi have enzymes on them to digest natural sugars like sucrose(fruit), fructose(fruit) and lactose (dairy). So it may be wise to eliminate these things for a while, only consume fruits that are low in fruit sugars, and stop all dairy for a few weeks. Hopefully this will help reduce the pain. Your intestines need time to heal, and then after a few weeks try drinking a little bit of Lactose free milk and see if you have a problem. If you give your intestines a break they will heal much faster.

I hope this helps. Feel free to send me an e-mail if you want to talk.

God bless,

Mariann

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Thanks for your reply everyone. I booked an appointment with my doctor to see why I have this pain. My guess is like some of you said, it's probably my intestine still recovering. I will see what the doc says though. Thanks again and good luck to you all.

~Newbie

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I, too, have had this pain. I'm still in the stage between seeing my PCP and a GI for a final disgnosis. My PCP did an antibody test, which came out negative. He thinks it's a false negative and that I have a mild case. I said, "mild? You've got to be kidding me!" Sometimes the pain is so severe I can't work or talk with my coworkers. I've been gluten-free for almost two weeks now, and I know that's too soon to see some real results. However, there are days when I feel better than others. Yesterday I was at CostCo trying samples and I accidentally put a ravioli in my mouth before I knew what i was doing. That afternoon I had a really bad stomach ache. Does anyone know of a way to treat this type of pain. I've tried Tums, Pepto, Gas-X, Tylenol... Nothing seems to work. Any suggestions?

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soul04,

I figure your doctor probably meant "mild" in the sense that you are not yet producing enough antibodies to show positive on a blood test. That is a good doctor. Certainly the symptoms we celiacs have are not "mild" to us. I also tested negative on all the tests, and do actually have celiac disease.

You weren't gluten free before the testing were you? That would certainly mess up the results.

Mariann

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No, I started several days later. I plan to call my GI to see if i should have some wheat (or maybe beer ;) before my appointment to get accurate test results. I think, though, that I won't have an endoscopy done on my first appt, so I'd like to go gluten-free as much as I can to alleviate my symptoms. Btw, during an endoscopy is the patient awake or knocked out?

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Soul04, during my endoscopy, I chose to stay awake. I know some people didn't mind remaining awake during it, but for me, I would never do it again unless I'm sedated. I don't want to scare you, but I was basically gagging the entire time. I'm sure there are others on here who had it w/o sedation and didn't mind... I'm only speaking from my experience. Talk to your GI about whether or not you should use sedation and get their professional opinion. And ask on this board what others think of sedation... maybe it's not that great... get their opinions, they know a lot. As for the pain you feel, I don't find that tums or such things helped me. What I do find helps a lot is I use a heating bag and apply it where it hurts. It does a lot for me in the sense that it lightens the soreness I feel above my navel in my abdomen. If you are going to go for more blood tests to test for celiac, don't go gluten free. As Mariann said, you will mess up the results. Best of luck and if you find out how to deal with this pain, post it because I'm eager to solve this issue. Take care!

~Newbie

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I was under sedation and wouldn't have it any other way. I slept peacefully, didn't even know anything had happened. The only side effect I had was that I was sleepy all day, but I had the best nap I've had in years :D

Lily

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The only side effect I had was that I was sleepy all day, but I had the best nap I've had in years

Lily, I love that! :D I'm having another endoscopy done on Tuesday and I'm really looking forward to that nap. I'm a busy mother of three and I never get a nap. My only concern was when I had a colonoscopy done a few months ago at the same place I woke up near the end. I don't want to wake up during the EGD, so I think I'll talk to them about it when I get there...

Mariann

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i was sedated during my endoscopy... it was heaven. slept like a baby. didn't feel a thing. My throat felt like i was starting to get a cold after the endoscopy, but about halfway through the day i started feeling much better.

I think it's worth being sedated, i've heard it hurts a lot when you're not, swo i'd consider being knocked out. The meds that put you under isn't too strong either, i woke up about 20 minutes after the endoscopy.

Hope this helps

Nadia

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Mariann,

I know what you mean being a busy mom, etc. etc. I know one of the things they gave me was Versed. I fell asleep so fast I couldn't even believe they'd done the procedure, lol. I never nap either, but I look back on that one with a smile. Good luck with your procedure, may you have a good peaceful nap :D

Lily

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Hi all, You definitely want to be asleep during your endoscopy. On my second one I woke up near the end of it and it was no fun at all! They told on leaving that if I had a problem, go to the hospital for treatment.

Also, I have that pain above my navel also. I have been on this diet for over a year now and still get it and not necessarily from gluten. If I eat something which my system considers hard to digest, the pain comes and last for a couple of days. I take Pepto Bismol for it and sometimes use a heating pad and that is the only thing that works. I recently tried some powdered Magnesium and boy did it do a number on me in that area--never again. Even after a year I have to eat basically a soft diet with not a lot of roughage because my bowel just cannot handle it yet. My villi were flat on the first endoscopy and about six months later the doctor said it looked normal, but of course it still isn't working normally. I have some good days and several bad days. I find it hard to sit up for long periods of time without getting that soreness just above the navel. I believe that is where the most damage is and it is taking the longest to heal. Any thoughts?

Linda

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Linda, I am 69 and was just diagnosed 3 years ago. I also am still not healed, although I was doing much-much better until Friday night, when I came down with that awful flu. First nausea, then diahrrea, then lethargy, then a fever of 104.5 degrees the next day. By Sat. afternoon I could barely make it to the bathroom, with help, from my poor husband who also had the flu. Then on Sunday night my youngest daughter, who lives with us at the moment, can home from work with the same thing. This is Tuesday and none of us are feeling much like shouting. My skin hurts, my joints are stiff, and I can barely manipulate my hands. As for healing, I'm just hoping against hope that this set back has not destroyed all the good my gluten free diet has started for the last 3 years. It seems that this flu is harder on Celiacs than most people. It really does take longer for us, who have not been diagnosed for so many years to heal. I hope you begin to heal soon and stay away from the flu if you possibly can. Shirley

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Shirley:

I am sorry you are sick, I could not imagine having the the flu or stomach virus on top of celiac disease. Take care of yourself and I hope you feel better soon! :)

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Stacie, According to the CDC this is not the flu. So what accounts for the high fever, severe muscle and bone pain, lethargy, headache, etc.? , not to mention the diarrhea, stomach pain, vomitting. If it were just me I would say, O.K. it's the Celiac thing. But it's not just me, it's everyone in San Diego, with or without Celiac. Mine was just exaggerated because of the Celiac. Today is better, but still shakey. One step at a time, I guess. My husband came down with it yesterday and my daughter is still sick, so I guess I'm the only healthy?one in the househould. <_< Now that's a real joke. :D Anyway I've really got a lot of reading done since my fever came down and that's a plus. Thanks, Shirley

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