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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Intestinal Pain Radiating/referred Pain To Back Pain?
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18 posts in this topic

First of all -- I respect each and every one of you beautiful, strong, brave, and resilient human beings. What you fight through each and everyday make you warriors beyond the comprehension of anyone else on this earth.

My question is somewhat simple; but please don't let that discourage you from speaking your mind to the fullest.

1.) Has anyone experienced referred back pain from your intestinal pain? Does your intestinal pain radiate to your back, ever? Please feel free to state any of your peculiar symptoms.

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I'm actually really glad you posted this. I just asked the question recently about where everyone's 'aches and pains' are located and haven't received any replies yet. I have pain near my belly button on my right side and I have back pain that would be in the same region as the pain near the belly button. I have tried chiropractic, thinking that would help the sore spot on my back, only to be told by the chiropractor that the pain is coming from something internal that is causing the pulling on my back. I can only assume that it's inflammation in my intestines. I also have pain in my lower right abdomen (neary my ovary) and pain in my back in the sacral region on my right side. The pain may be related but I do have arthritis and my doctor suspects possible ankylosing spondylitis. I am new in this journey as I have only been recently diagnosed (a couple of weeks ago) and have been gluten free for only four months. I have no clue what the pain is from or if I will ever know but it would be interesting to know if others have experienced this.

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I'm actually really glad you posted this. I just asked the question recently about where everyone's 'aches and pains' are located and haven't received any replies yet. I have pain near my belly button on my right side and I have back pain that would be in the same region as the pain near the belly button. I have tried chiropractic, thinking that would help the sore spot on my back, only to be told by the chiropractor that the pain is coming from something internal that is causing the pulling on my back. I can only assume that it's inflammation in my intestines. I also have pain in my lower right abdomen (neary my ovary) and pain in my back in the sacral region on my right side. The pain may be related but I do have arthritis and my doctor suspects possible ankylosing spondylitis. I am new in this journey as I have only been recently diagnosed (a couple of weeks ago) and have been gluten free for only four months. I have no clue what the pain is from or if I will ever know but it would be interesting to know if others have experienced this.

That location is kind of low, but maybe gall bladder. The lower one ? appy?

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I have a bad back with bulging discs and a some paralysis where a disc burst and pinched off a nerve. I've had a bunch of lower back and sciatic pain. During pms, my back will get sore, and if I get too backed up with C, I can get pain too...It doesn't sound like what you describe. Good luck, I hope it resolves soon.

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That location is kind of low, but maybe gall bladder. The lower one ? appy?

It could be gallbladder but I do know, from a previous barium swallow years ago, that I have a very long and skinny stomach. The technician said it was unusual when he was trying get a x-ray of it (weird, I know). So who knows if it's gallbladder. As for the other pain, I have had it for quite a while so I doubt it's my appendix but again, I don't really know. I guess I will wait and see what the GI doctor says- I have an endoscopy in a few weeks.

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for quite a while so I doubt it's my appendix but again,

What do you mean? Didn't they remove it the first time? Usually, if you have an appendix problem, they remove it before it becomes worse and more dangerous. Once its removed, its unlikely to be an issue.

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What do you mean? Didn't they remove it the first time? Usually, if you have an appendix problem, they remove it before it becomes worse and more dangerous. Once its removed, its unlikely to be an issue.

I mistyped, sorry! I meant I doubt it would be my appendix because I have had the pain in my lower right abdomen a really long time.

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Has anyone had their gallbladder removed; consequently having Celiacs? Or any other gallbladder issues for that matter?

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I get a tingling/pain in my right shoulderblade near the spine. It's confirmed it's from my malfunctioning gallbladder (dyskenesia).

If you have damage in your duodenum it can prevent the hormone (CCK) from being made and sent to the gallbladder and pancreas. This hormone tells them to squeeze bile and digestive enzymes that you need for digestion. When the villi grow back the function should improve, but a LOT of Dr.s just recommend having the gallbladder taken out if it has dyskenesia.

Your function level can be tested with a HIDA scan. Gall stones can be detected with an ultrasound. A lot of Dr.s suggest removal for stones too, but there are treatments that can be tried to save the gallbladder.

Many Dr.s say that we don't need a gallbladder, so removal is no big deal. I'd like to keep mine thank you. ;)

Here is a link about Celiac disease and gallbladder problems.

http://www.celiac.com/articles/119/1/Gall-Bladder-Disease-and-Celiac-Disease---By-Ronald-Hoggan/Page1.html

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What do you mean? Didn't they remove it the first time? Usually, if you have an appendix problem, they remove it before it becomes worse and more dangerous. Once its removed, its unlikely to be an issue.

There is such a thing as chronic appendicitis. Also, apparently, they don't "rip them out" so quick any more. Medical management may be front line treatment.

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Biliary dyskinesia can be fatal if your ejection fraction shows a less than optimal functioning percentage. The organ can become 'clinically dead' and become gangrenous; consequently causing sepsis and or peritonitis if it ruptures.

I have tried the homeopathic approach; at least three gallbladder flushes. The reasoning behind that: purely desperation. The results of that homeopathic treatment approach is merely soapinification; which is created when you mix an alkaline - or base - with an acid.

I'm considering having my gallbladder removed all together.

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Biliary dyskinesia can be fatal if your ejection fraction shows a less than optimal functioning percentage. The organ can become 'clinically dead' and become gangrenous; consequently causing sepsis and or peritonitis if it ruptures.

I have tried the homeopathic approach; at least three gallbladder flushes. The reasoning behind that: purely desperation. The results of that homeopathic treatment approach is merely soapinification; which is created when you mix an alkaline - or base - with an acid.

I'm considering having my gallbladder removed all together.

When mine was tested it was at 30% function. It bothers me, but I want to give it a chance to heal. The specialist I saw at Mayo Clinic agreed that I should keep the gallbladder. He didn't say, and I didn't think to ask, how many patients he's seen gain an improvement in function and become healthy.

I wondered if bile could back up into the liver and cause problems too? He didn't say to get follow up liver function tests, so maybe it's not usually a problem?

I guess it depends what level of function you have? I've considered having mine retested to see where the level is at, but haven't it yet.

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I have not posted for some time out of frustration with my ongoing issues. I have been gluten free now for over a year with virtually no improvement in any of my symptoms with the exception of bloating and belching. My pain from day one has been through into my mid back and around into my rib cage, even in the past year prompting my gallbladder removal and a recent exploratory surgery. I am also developing joint pain in the knees and hands, but the mid back pain is crippling. Everyday I feel like I have the worlds worst hangover with a headache, severe malaise and slight nausea and disabling fatigue, yet I cannot sleep worth a damn. To my knowledge I am not getting cross contaminated, and really doubt that it is related to this as I really have never felt well even after starting a gluten free diet. In addition all of my markers TTG, and biopsy have returned to normal according to GI doc. I have a positive ANA 1 :160 titer, but they feel this is just incidental. Many days like today I literally feel as if I am going to die, and it scares me to think my wife will end up finding me dead somewhere. I have exhausted nearly every option I can think of, my GI doc is "an expert" in celiac disease and has no explanation as to why I still have horrendous pain. Maybe celiac disease does permanent damage to your spine and joints? I figured I would be better by now.

Anyone else have any similar story or answers?? I just want my life back so badly and am barely hanging on by a thread.

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I have not posted for some time out of frustration with my ongoing issues. I have been gluten free now for over a year with virtually no improvement in any of my symptoms with the exception of bloating and belching. My pain from day one has been through into my mid back and around into my rib cage, even in the past year prompting my gallbladder removal and a recent exploratory surgery. I am also developing joint pain in the knees and hands, but the mid back pain is crippling. Everyday I feel like I have the worlds worst hangover with a headache, severe malaise and slight nausea and disabling fatigue, yet I cannot sleep worth a damn. To my knowledge I am not getting cross contaminated, and really doubt that it is related to this as I really have never felt well even after starting a gluten free diet. In addition all of my markers TTG, and biopsy have returned to normal according to GI doc. I have a positive ANA 1 :160 titer, but they feel this is just incidental. Many days like today I literally feel as if I am going to die, and it scares me to think my wife will end up finding me dead somewhere. I have exhausted nearly every option I can think of, my GI doc is "an expert" in celiac disease and has no explanation as to why I still have horrendous pain. Maybe celiac disease does permanent damage to your spine and joints? I figured I would be better by now.

Anyone else have any similar story or answers?? I just want my life back so badly and am barely hanging on by a thread.

Are you taking digestive enzymes? If the reason your gallbladder failed is because it wasn't getting the CCK that tells it to squeeze, your pancreas may not be getting the signal to release digestive enzymes either?

If you aren't releasing the enzymes you need it might be the cause of your nausea, pain, etc.? I believe they can test your pancreatic enzyme levels?

I know you were having trouble after your gallbladder surgery. I had hoped you had improvement by now. Very frustrating isn't it?! :(

Are you taking probiotics? It sounds like you may need them?

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I have not been taking either. Guess I have been reluctant to add another variable to the mix, maybe it is something I should consider, honestly most days I feel so ill I have a hard time even thinking. I guess I am frustrated with why this has been such a long process, especially if my celiac disease according to the GI doc has healed.

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I have not been taking either. Guess I have been reluctant to add another variable to the mix, maybe it is something I should consider, honestly most days I feel so ill I have a hard time even thinking. I guess I am frustrated with why this has been such a long process, especially if my celiac disease according to the GI doc has healed.

The digestive enzymes break down your foods so you can absorb the nutrients better. If there's something you're not absorbing well, (maybe a trace vitamin/mineral they don't test for) it might be the cause of some of your symptoms? It might be a good idea to have your pancreatic enzyme levels checked? You could try supplementing with an over the counter one if you'd rather not go through more testing right now. I know it gets to the point where we just feel like lab rats. Without the digestive enzymes our food just sort of sits there and feels like a lump.

It's frustrating that our "specialists" don't think to test for some of the things that just seem like common sense to me?

The probiotics also help break down your foods and help to balance the gut flora. If you have a bacterial overgrowth/dysbiosis that can cause all sorts of symptoms too. I think most of us enter into this with poor probiotic status due to antacids and antibiotics we've been given in the past. Dr.s in general don't tell us to take them. They seem to prefer RX meds, and if it's not RX they don't want to deal with it? Probiotics have been proven to aid in good health. That's why we see the advertisements for them now that we didn't see in the past.

Very few Dr.s study nutrition. It's an elective course in med school, so help in figuring most of this out is up to us to do on our own. Sad really.

As far as being healed from Celiac damage..I think there are degrees of healing? Not all of the small intestine can be seen when scoped, and not all of what can be seen is biopsied. I think they look for improvements and call it healed, but it may not be healed enough to be symptom free? I've wondered too, if the villi ever get scar tissue which would inhibit absorption of some vital nutrients? I haven't seen any articles about that, but it's been shown that there are 100% compliant patients that seem to have some level of villi damage or malabsorption persist over time.

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That location is kind of low, but maybe gall bladder. The lower one ? appy?

Actually I have had gallstones and can tell you the pain is upper right quadrant. It's almost under your rib cage. When the doctor checks for it he has you breath in and he presses down and goes under the rib cage.....by the way if you have gallstones you will jump off the table at this point. Lol.

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First of all -- I respect each and every one of you beautiful, strong, brave, and resilient human beings. What you fight through each and everyday make you warriors beyond the comprehension of anyone else on this earth.

My question is somewhat simple; but please don't let that discourage you from speaking your mind to the fullest.

1.) Has anyone experienced referred back pain from your intestinal pain? Does your intestinal pain radiate to your back, ever? Please feel free to state any of your peculiar symptoms.

I often get back pain when I have bad stomach pain. I don't really know why, but it does happen.

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