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LouiseF

Severe Pain, Celiac Issue

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Hello,

My GI Dr suggested I come here and look for some help because he is at the end of testing and doesn't know what else to do.

I was diagnosed with celiac disease 5 full years ago. Have been diligent about staying away from gluten. Each year I get my celiac disease tested and my numbers are always well below 10.

I had intestinal pain before this for 25 years. After getting off of gluten it never went away. Last October a new severe pain started in my gall bladder area. I have had an ultrasound, Hida scan, CT scan and colonoscopy. All test results came back that everything was fine. I had an endoscopy with a test and it showed that my villa spore was still damaged. To my dr that indicated I am still being exposed to gluten. I don't see how.

The pain now (4 months later) can be very bad in my gall bladder. He thought it was biliary dyskinesia and wants to take the gall bladder out. I would rather not.

He is sending me to a nutritionist next monday in the hopes that he can help me.

Anyone have any ideas of what this pain could be from?

I have a VERY healthy diet and in the past year I have lost 52 lbs.

I would appreciate any suggestions from anyone.

Thank you

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I did a post earlier stating that had intestinal pain for 25 years. I forgot to mention something important.

5 full years ago I found out that I have celiac disease.

I have been real strict about staying off of gluten ( as far as I know).

My intestinal pain never went away.

Last October I started with a new real bad pain in my gall bladder area.

Since then I have had ultrasound, Hida Scan, Ct Scan, colonoscopy. All test results came back negative.

I had bloodwork showing IgA deficient. Now my GI dr is perplexed and suggested I come here and see if someone can help me.

Endoscopy showed villa sprue damage as if I was still getting gluten. I don't see how.

I am trying to eat only warm foods, no food combinations that will promote fermenting of foods in my belly.

I take 30 billion pro-biotics. It all isn't making it go away. This pain has been here for 4 months now.

Any suggestions would be greatly appreciated.

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I did a post earlier stating that had intestinal pain for 25 years. I forgot to mention something important.

5 full years ago I found out that I have celiac disease.

I have been real strict about staying off of gluten ( as far as I know).

My intestinal pain never went away.

Last October I started with a new real bad pain in my gall bladder area.

Since then I have had ultrasound, Hida Scan, Ct Scan, colonoscopy. All test results came back negative.

I had bloodwork showing IgA deficient. Now my GI dr is perplexed and suggested I come here and see if someone can help me.

Endoscopy showed villa sprue damage as if I was still getting gluten. I don't see how.

I am trying to eat only warm foods, no food combinations that will promote fermenting of foods in my belly.

I take 30 billion pro-biotics. It all isn't making it go away. This pain has been here for 4 months now.

Any suggestions would be greatly appreciated.

After I was diagnosed with celiac disease and casein allergy, I abstained from those and also had continual gut pain. Later tests diagnosed 5 more delayed reaction (IgG and IgA) food allergies. Abstaining from those foods helped somewhat. However, continual gut pain influenced me to request tests for gut bacteria, parasites and yeasts. Over a 4 year period I was diagnosed with and treated for infections from 5 different gut bacteria, 2 parasites, and one fungus. Nevertheless some digestive pain continued until another doctor tested my stomach acid production and diagnosed low stomach acid which prevented me from completely digesting what I ate and caused bloating, gas and cramping pain. Now I can finally eat and digest normally with digestive supplements and abstinence from all my food allergens. I also continued to abstain from any kind of alcohol derived artificial sweetners, which can cause similar symptoms.

So I suggest you get a blood test (ELISA) for other delayed reaction food allergies, a stool test for gut bugs and a stomach acid production test to see if your digestion is impaired. (Good luck with that last one, because most docs are brainwashed by Big Pharma's acid blocker drug campaigns.)

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After I was diagnosed with celiac disease and casein allergy, I abstained from those and also had continual gut pain. Later tests diagnosed 5 more delayed reaction (IgG and IgA) food allergies. Abstaining from those foods helped somewhat. However, continual gut pain influenced me to request tests for gut bacteria, parasites and yeasts. Over a 4 year period I was diagnosed with and treated for infections from 5 different gut bacteria, 2 parasites, and one fungus. Nevertheless some digestive pain continued until another doctor tested my stomach acid production and diagnosed low stomach acid which prevented me from completely digesting what I ate and caused bloating, gas and cramping pain. Now I can finally eat and digest normally with digestive supplements and abstinence from all my food allergens. I also continued to abstain from any kind of alcohol derived artificial sweetners, which can cause similar symptoms.

So I suggest you get a blood test (ELISA) for other delayed reaction food allergies, a stool test for gut bugs and a stomach acid production test to see if your digestion is impaired. (Good luck with that last one, because most docs are brainwashed by Big Pharma's acid blocker drug campaigns.)

Thank you for the nice response. My GI Dr said that he doesn't believe in food allergy testing ( because I asked him to do some). he felt they can be inaccurate.

I was tested for parasites by a naturopathic dr and my gi dr gave me an antibiotic about 6 months later just incase. So it is hard for me to stay away from definitive foods but I don't consume much sugar, dairy or meat. I have some but not much. After reading peoples posts it almost seems like I need to stay off of them 100% as a test.

I also took an acid reducer for a month through the GI dr as an experiment. No results. I am very much into herbs and natural health so I can discuss this new issue about acid with my naturopathic dr and see if there is something that she recommends.

I am so far from Big Pharma, I stay away from them. that is all the dr know. It is VERY sad. thanks again.

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You say you stay away from meat. Do you consume soy? It may not be the case for you but soy gives me the pain you describe. It took me 5 years to figure it out. Are you eating mostly fresh unprocessed foods? Are you being careful about CC in your home and especially in restaurants? A very few of us are sensitive to distilled gluten in alcohol. Are you someone who drinks distilled gluten beverages? If yes then try switching to something for sure gluten free like wine and see if that helps.

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I would like to suggest something too. Can you be fructose intolerant? I'm and after going gluten free I will have a very bad and strong reaction to fructose now. Before I had bloating, gas, occasional diarrhea from it, but now I will have excruciating pain in my intestines. It feels like somebody chop me in half. I must stay away from things that have high content of fructose - apples, pears, syrup, jelly, fruit from jars, etc. If you eat mostly vegetable and fruit, can this be your problem?How to find out, if you are fructose intolerant is to have hydrogen breathing test, or eat 1-2 apples on empty stomach and wait 3 hours. If you will react with pain, bloating, then you are fructose intolerant. Try to avoid fruit with high content of fructose. Berries and small amount of citrus fruit is ok to eat.

Also I'm also reacting to other vegetables like broccoli, cauliflower, cabbage, Brussels sprouts, etc. It happened after gluten and casein free diet. I will have them in very small amounts and I will have strong reaction anyway. Before I had bloating, now pain.

Because I mentioned breathing test I would like to tell you about SIBO. It can also cause pain in the intestines. My doctor gave me also antibiotics to kill it, but after about two months I still had pain and bloating. I asked the doctor to check it again, if everything was killed-bacteria the first time. I had another test and it was positive. I got second round of stronger antibiotics.

Did you have CT with contrast? Did doctor checked, if you don't have any obstruction that can cause pain?

Also one last thing. Can you have pinched nerve in your spine that is causing problems in your right upper quadrant? It's the long shot, but when I went to a chiropractor, I saw a poster in his office where was spine and nerve connection to each organ. I mentioned this just in case.

I hope that you will find very soon what is causing this pain and have pain free life again.

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I did a post earlier stating that had intestinal pain for 25 years. I forgot to mention something important.

5 full years ago I found out that I have celiac disease.

I have been real strict about staying off of gluten ( as far as I know).

My intestinal pain never went away.

Last October I started with a new real bad pain in my gall bladder area.

Since then I have had ultrasound, Hida Scan, Ct Scan, colonoscopy. All test results came back negative.

I had bloodwork showing IgA deficient. Now my GI dr is perplexed and suggested I come here and see if someone can help me.

Endoscopy showed villa sprue damage as if I was still getting gluten. I don't see how.

I am trying to eat only warm foods, no food combinations that will promote fermenting of foods in my belly.

I take 30 billion pro-biotics. It all isn't making it go away. This pain has been here for 4 months now.

Any suggestions would be greatly appreciated.

My first thoughts are that you have another food intolerance. Your Dr. is right..testing isn't good at finding them. Soy gives me pain like you described and it's in SO many things! I found it hiding in my supplements. It was in my fish oil, D3, in my Multi. It's in salad dressings, chocolate, It's in all sorts of things.

Do you eat a mainly whole foods diet, or do you eat the gluten-free replacement foods? Some peole react to the small amount of gluten those foods contain.

Another thing it *could* be is fructose malabsorption.

It would be a good idea to have the acid level in your stomach tested too.

I was put on acid blocking meds years ago for reflux. Nobody tested my acid levels. Low acid can cause indigestion and reflux, much like too much acid can.

I've been having the very same pain you descibe. My gallbladder function is at 30% and I was told to consult a surgeon about having it removed. I did a bit of looking online and found that biliary dyskenisia can cause those symptoms. I also found that the acid reducer I've been on for years contributes to the dyskenesia. I went off it to see if I get any improvement, because I don't want surgery!

Start keeping a log of what you eat. Note any symptoms you get. Many food intolerances have a delayed reaction, so having everything written down can help you put the pieces of the puzzle together. It took me a while to figure out that soy was "getting me".

Good luck to you. I hope you can get this sorted out.

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