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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Left Side And Rib Pain...anyone Else?
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59 posts in this topic

Yeah, he said endoscopy in 6 weeks if nothing changes. He doesn't do camera pills, insurance doesn't cover.

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I agree with everything cyclinglady has suggested!  Having diarrhea every day is sheer misery.  I hope that he doesn't make you wait 6 weeks.  If these medications aren't helping, go back in and see if he's willing to schedule it earlier or do other testing....I'm not sure what.  I really do feel for you.  Leading up to my celiac diagnosis I had D 10-20 times a day for several months.  It was horrendous.  ((((Hugs)))) 

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Well, two weeks of diarrhea could be a bug if some sort (virus, bacteria, parasite, etc.), but it does not address the other symptoms that have been around for a year.    Taking meds just to cover symptoms is not good either in my non-medical opinion.   A follow-up endoscopy might be a good idea.  Check out the villa too!  

My niece was recently diagnosed with Crohn's.  I thought for sure that she had celiac disease.  But a pill camera caught severe damage at the end of her small intestine, beyond the reach of scopes.  Her symptoms did not even match classic Crohn's, but neither did mine for celiac disease.  😟  Another member, just recently developed ulcerative. colitis on top of his celiac disease.  What I am saying is keep advocating for your health.  Something is wrong, but let's hope is is just a pesky bug!!!

 

 

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Thank you ladies.

I called his office to let him know that the medication isn't working but the side effects are kicking in, dry mouth, headache, cessation of perspiration and dry eyes. Now I have to wait for him to call back at the end of the day. 

I had a colonoscopy last year in January but haven't had an endoscopy since I was first diagnosed 9 years ago.

He seems to think that I have become more sensitive to gluten and to switch my pet food to gluten-free, have my wife buy gluten-free makeup and make sure that all my toiletries are gluten-free. That would pretty much make me homebound. 

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10 minutes ago, GeorgeW said:

He seems to think that I have become more sensitive to gluten and to switch my pet food to gluten-free, have my wife buy gluten-free makeup and make sure that all my toiletries are gluten-free. That would pretty much make me homebound. 

Why would that make you homebound?  Your pets will likely be healthier, there are a lot of gluten free makeups and toiletries available and you may discover many that you are using already are safe.

It is possible to become more sensitive and there are a lot of pain in the butt precautions we have to take but it is worth it in the end to get our health back.  Hopefully you will be able to figure out what is going on soon. If any folks know what a misery daily D is we do here!

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I do all that stuff (pet food, a lot of make up, shampoo).  My house is gluten free (hubby and I both have issues with gluten....go figure!  😳)  It does not make me housebound!  Gee, your wife could be glutening you just by kissing!  

Nine years.  I would do the endoscopy for that reason alone (am holding out for five years).  The blood tests  are not always accurate.  Symptoms can wax and wane.  keep advocating for your health.  

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Even if my pets and wife were free of gluten, most everyone else in the world is not. I come in to contact with numerous people every day. I'm a therapist in a nursing home. If all it takes is to hug someone not gluten-free or pet a dog that eats regular dog food to cause a reaction, I might as well stay home.

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50 minutes ago, GeorgeW said:

Even if my pets and wife were free of gluten, most everyone else in the world is not. I come in to contact with numerous people every day. I'm a therapist in a nursing home. If all it takes is to hug someone not gluten-free or pet a dog that eats regular dog food to cause a reaction, I might as well stay home.

You don't need to worry about work as far as hugs, hand shaking, feeding others etc as long as you wash your own hands before you eat.  The concern with the make-up and your wife being a gluten eater is more intamite contact like kissing on the lips etc.

 

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I guess the point of my original post is being missed. I'm saying that I know that I haven't ingested any gluten in the past 6 weeks because I was doing the No Grain No Pain 30 day diet which is totally grain free and then I switched to the DASH diet which is also grain free for the first 2 weeks and yet I've developed this diarrhea which so far has lasted over 2 weeks. When I have been glutened in the past, and it wasn't often because I never cheat, symptoms only lasted a day. This makes me wonder if the diarrhea is due to celiac disease at all or maybe something else? I have also had the pain in my side for over a year. When I lie on my left side it hurts more due to pressure. Then when I roll on to my back or sit up, I get a queasy somewhat burning sensation in my stomach which is followed shortly thereafter by another bout of diarrhea. My original question was to ask if this has happened to anyone else and if this is a normal course of the disease?

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You have had celiac disease for 9 years.  You know the drill.  That is not in dispute.  I think there is something definitely wrong.  Your GI needs to do more investigative work to determine the root cause of your symptoms.  Other GI issues need to be ruled out (the list is too long but stuff like ulcers, Crohn's gallbladder, ducting issues, cancer).    But as a celiac, one of the first things to rule out is a gluten exposure.  Maybe something in your environment has changed and you have not noticed it.  It happens to the best of us, so we always ask.  From personal experience, my "glutenings"  have not been consistent.   Each time I had to ask my GI to check because my symptoms were so varied (strange when I just had anemia as my only symptom when diagnosed).   But if my symptoms did not resolve and my blood tests were okay, I might insist on another endoscopy to really rule out villi damage and/or to look for other possible issues (like cancer).  

Let's hope that others might have experienced your exact symptoms.  

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1 hour ago, GeorgeW said:

I was doing the No Grain No Pain 30 day diet which is totally grain free and then I switched to the DASH diet which is also grain free for the first 2 weeks and yet I've developed this diarrhea which so far has lasted over 2 weeks.

Applying Occam's razor, could the diarrhea simply be related to the diet change and thus separate from the rib pain?

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The only change in the diet was an elimination of all grains. Everything else was food I had already been eating. Chicken, fish, lean beef or pork, fresh fruits and vegetables. 

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5 hours ago, GeorgeW said:

I guess the point of my original post is being missed. I'm saying that I know that I haven't ingested any gluten in the past 6 weeks because I was doing the No Grain No Pain 30 day diet which is totally grain free and then I switched to the DASH diet which is also grain free for the first 2 weeks and yet I've developed this diarrhea which so far has lasted over 2 weeks. When I have been glutened in the past, and it wasn't often because I never cheat, symptoms only lasted a day. This makes me wonder if the diarrhea is due to celiac disease at all or maybe something else? I have also had the pain in my side for over a year. When I lie on my left side it hurts more due to pressure. Then when I roll on to my back or sit up, I get a queasy somewhat burning sensation in my stomach which is followed shortly thereafter by another bout of diarrhea. My original question was to ask if this has happened to anyone else and if this is a normal course of the disease?

Maybe you need the fiber in some grains so that you don't get diarrhea?  

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GeorgeW, 

Hi. I'm sorry you're feeling ill and are frustrated finding answers.  I understand.  I spend a bit of time researching how Celiac Disease and the resulting malnutrition can affect us.  I'm not a doctor.  I'm a microbiologist.  

You said you were very careful with your gluten free diet, so I believe you weren't glutenized. However, vitamin deficiencies can still occur due to malabsorption problems. Many gluten free foods aren't fortified like their gluten containing counterparts.  Vitamin deficiencies on a long term gluten free diet may occur.

I found this study about a woman who developed thiamin deficiency after going on a water only fast for forty days.  She didn't become ill until after she started eating again.  Her body had used up its store of thiamine while she was burning fat (ketosis) on the fast.  When she started eating food again, her body needed thiamine in order to switch to burning carbohydrates for energy.  With depleted thiamine, she became ill.

You said you had been grain free for six weeks (ketosis) and recently switched back to a carbohydrate containing diet.  I wonder if the same thing could be happening to you.  

Here's the article:

 http://journals.sagepub.com/doi/full/10.1177/0884533614561793

And here's a quote from the article about why the deficiency developed.

"In this case, WE was caused by fasting leading to malnutrition.  If the body does not acquire adequate thiamine through oral ingestion, the body’s thiamine stores will be depleted within 3 to 4 weeks, initiating a metabolic cascade toward the development of WE. It is likely that she did not manifest symptoms of thiamine deficiency until after the fasting was completed and food was reintroduced for the following reasons. Within the first 72 hours of fasting, the rate of carbohydrate utilization for energy synthesis declined as glycogen stores were depleted. During this time, the rate of lipolysis and ketone body formation increased to provide the body’s cells with needed energy.31 Gluconeogenesis, or the production of glucose from noncarbohydrate sources, provided the necessary glucose for the body’s cells, particularly the brain cells.31 The patient’s prefasting thiamine stores may have been adequate to sustain substrate oxidation during the fasted state. However, as dietary macronutrients were reintroduced and oxidation increased, the body’s metabolic demands for thiamine greatly increased, yet the body’s thiamine-deficient state could not meet these demands. At this point, the brain’s demand for thiamine as a necessary coenzyme exceeded supply, resulting in cellular damage and the manifestation of WE in the patient." 

SIBO (small intestine bacterial overgrowth) may also occur when changing diets and is connected to thiamine deficiency.  It can cause pain in the upper left quadrant of the abdomen where you say you have pain.

I hope this helps. Perhaps it will give you and your doctor a new direction to explore.  Please keep us updated.

 

 

 

 

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This makes me wonder if the diarrhea is due to celiac disease at all or maybe something else? I have also had the pain in my side for over a year. When I lie on my left side it hurts more due to pressure. Then when I roll on to my back or sit up, I get a queasy somewhat burning sensation in my stomach which is followed shortly thereafter by another bout of diarrhea.

The question I ask myself here is if the two things you are describing are connected? Rib pain/pressure pain could be a bleb on a lung (tiny air sac), costocondritis (a very common diagnosis in the emergency dept), any number of things. Then I would ask if you think the left sided positional-related pain causes the diarrhea??

Someone suggested thiamine deficiency and linked to an article describing Wernicke’s Encephalopathy , which usually occurs from prolonged alcohol use and abuse. It results from a lack of B1 or thiamine in the brain. Wernicke’s precedes Korsakoff. The triad symptoms are: confusion, the inability to coordinate voluntary movement (ataxia), and eye (ocular) abnormalities. It can cause leg tremor. In other words, the indications are: confusion, diplopia, nystagmus, ataxia, apathy. I would be fascinated if what you have turns out to be WE, but I have my doubts.

Plumbago

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8 hours ago, knitty kitty said:

 

You said you had been grain free for six weeks (ketosis) and recently switched back to a carbohydrate containing diet.  I wonder if the same thing could be happening to you. 

First of all.  Thanks to everyone who has replied to my post.  You have given me lots to think about that I would not have considered otherwise.  Knitty Kitty I think you may be on to something since I had a sandwich 2 days ago and yesterday (Aldi gluten-free bread of course) and yesterday I only had 1 small episode in the morning and nothing since.  This morning I had Bob's Red Mill gluten-free oatmeal so we'll see what happens.

1 hour ago, plumbago said:

The question I ask myself here is if the two things you are describing are connected? Rib pain/pressure pain could be a bleb on a lung (tiny air sac), costocondritis (a very common diagnosis in the emergency dept), any number of things. Then I would ask if you think the left sided positional-related pain causes the diarrhea??

 

Plumbago,

I have no pain in the ribs, the pain is in the space between my bottom rib and the iliac crest of my pelvis.  If my x-ray vision were working, I would say that it is my sigmoid colon that is giving me pain.  Tests however have shown nothing wrong.

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have no pain in the ribs, the pain is in the space between my bottom rib and the iliac crest of my pelvis.  If my x-ray vision were working, I would say that it is my sigmoid colon that is giving me pain.  Tests however have shown nothing wrong.

That is very interesting that you say that ! (And thanks for clarifying.) I am gluten-free and have been for some time. I used to get that pain fairly frequently (pre gluten-free days) and only occasionally do now. When it does occur, it is right before I have a BM, a lower left side stabbing pain that inevitably happens just before a BM and completely resolves with a BM. I posted about this in October, and bounce around on what I think it could be. What I currently think is that it is some kind of pain that radiates from my rectum (triggered by feces) up to my left side. Could it be a blockage? A diverticulum? Maybe. Could it just be a weird nerve thing? I just don't know enough right now.

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Hi everyone,

Just an update to my situation.  I had thought that I might be getting better since I started adding gluten-free grain back into my diet but I was wrong.  It seems that the Methscopalamine Bromide just delayed the effects, didn't stop them.  I had to stop taking it because one of the side effects is to stop sweating, which I did.  There were times when I felt hot and almost couldn't catch my breath.  Anyway, my doc put me on Viberzi instead.  I took 3 doses, 1 Tuesday evening and then 1 Wednesday morning and then again Wednesday evening.  Each time I took 1, it seemed that about half an hour later I would develop severe abdominal cramping, pain in my neck, shoulders and upper back and a feeling like my insides were on fire.  My face felt like it was hot and tingling.  It wasn't warm to the touch but felt like it to me.  Worse of all is it didn't work anyway, I still had diarrhea.  I stopped taking Viberzi after reading the precautions pamphlet which said, "stop taking Viberzi and tell your doctor if you have abdominal cramping, pain which radiates to your shoulders or upper back."  Go figure.  Anyway, today is 3 weeks straight of diarrhea and still no diagnosis and not sure what he's going to want to do next.

George 

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George,

i am sorry that you are not feeling well!  ☹️  I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid  approach.  It sounds like he suspects IBS which is really, in my opinion, "I be stumped".  Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out?  This includes both Crohn's and Colitis.  My niece was diagnosed with Crohn's finally with a pill camera after all other tests were given.  The damage was not within reach of any scope.  I am just throwing out suggestions.  Hopefully, you and your doctor will figure it out soon!  

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Cycling Lady,

LMAO at IBeStumped!  So true.

Yes, he is trying the band aid approach it seems.  That's probably the most frustrating thing of all.  So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium!  I reminded them that Imodium didn't work, I had already used it 8 days with no changes.  His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24!  I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country.  Hopefully they can give me better answers.

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Just now, GeorgeW said:

Cycling Lady,

LMAO at IBeStumped!  So true.

Yes, he is trying the band aid approach it seems.  That's probably the most frustrating thing of all.  So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium!  I reminded them that Imodium didn't work, I had already used it 8 days with no changes.  His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24!  I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country.  Hopefully they can give me better answers.

Dang!  If I lived that close to Chicago, I would definitely go to the University of Chicago's celiac center even just to hang out with some celiacs or celiac-savvy folk!  (Maybe visit Aunt Mary too....)  Consider a second opinion.  Some people spend more on their Friday night bar tab instead of paying for a second opinion (cash) if they went out-of-network (insurance).  Your current GI must suspect something (e.g. parasite).  Maybe he is hoping it will resolve on its own (frankly sometime this approach works), but that side pain for over a year is not normal.  

Keep advocating.  😊

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3 hours ago, cyclinglady said:

Dang!  If I lived that close to Chicago, I would definitely go to the University of Chicago's celiac center even just to hang out with some celiacs or celiac-savvy folk!  (Maybe visit Aunt Mary too....)  Consider a second opinion.  Some people spend more on their Friday night bar tab instead of paying for a second opinion (cash) if they went out-of-network (insurance).  Your current GI must suspect something (e.g. parasite).  Maybe he is hoping it will resolve on its own (frankly sometime this approach works), but that side pain for over a year is not normal.  

Keep advocating.  😊

Yes!  Call University of Chicago!  Switching you from one medication that's not working to another and back again isn't helping you.  It's definitely time to look at something else.  I'm so sorry that you're not feeling better.

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I'm going to contact my primary Dr and see what his take is on this.  I know I can't wait another 4 weeks to go to my gastroenterologist.  Today marks day 23 of diarrhea.  Since switching back to Imodium it has gotten worse.  I think that the other 2 medications, even though I couldn't tolerate them and they didn't stop the diarrhea, at least slowed it down a little.  If my primary has no clue, then I am definitely contacting U of C.  The only thing stopping me is that they are out of network for my insurance plan so it would be more costly. 

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Hi,

Has a doctor done any liver tests? The only other thing that occurs to me is lymphocytic or microscopic Colitis;  its  connection to celiac shows "particular interest."

Clinical Gastroenterology has a pdf online on diarrhea you may find useful, as it sounds like you will need to be doing your own research.

http://sgh.org.sa/Portals/0/Articles/Diarrhea - Diagnostic and Therapeutic Advances.pdf

Plumbago

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Thank you for this information.  I will certainly look into it.

I went back to my primary Dr and explained the situation.  He was unaware of the diarrhea (29 days now) and was appalled that the gastro didn't do any further testing.  He also thought it was time for a 2nd opinion from a different gastro.  I was all for it.  So, my primary had me do the stool sample testing over again checking for everything, not just C-dif.  I was given the "kit", which the gastro had never done, with the 4 tubes, 3 partly filled with some liquid and 1 empty.  Also the "hat".  I was worried that I might need a sombrero more than a hat.  It was the most disgusting thing I have ever had to do and I hope I don't have to do it again any time soon.

So I have an appointment with the new gastro this coming Monday but in the meantime, no meds to combat the diarrhea and lately I have avoided leaving the house in fear that I might get an "attack".  Usually my wife and I like to go out to a Mexican restaurant on Cinco de Mayo, but might have to forego it this year.

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