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Onepercenter

Excruciating Back and Chest Pain from CC

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I am hoping someone could possibly offer up ideas on several episodes I've had. First off, I am one of those Celiacs that is extremely sensitive. I've been told by my GI doc, 20ppm doesn't apply to you. Also, I have had chronic upper back and upper left quadrant pain intermittently for the last several years. So, with that said, serval months ago I accidentally ate a few bites of a regular burrito. I realized it because after bite one, horrible pain just to left of stomach (a chronic trouble spot for me), second bite the pain went through to my back (another chronic trouble spot) third bite so painful I went and got the wrapper out of garbage and realized my error. An hour later the vomiting/diarrhea started and lasted for about 5 hours. At the end of this time, I suddenly had pain so intense in my upper back I couldn't move. The pain was basically from bottom of ribs to base of neck and excruitiating, equal to no med childbirth with too much pitocin. It lasted about an hour and then subsided. Now I've had this pain happen twice just in the last 3 days. Once after possibly being cc'd, and then again 24 hours later with no possibility of gluten or cross contamination. The second episide sent me to the ER with pain in my chest and back that was absolutely crushing - and I got no answers whatsoever. I have been gluten-free almost 2 years and have had no predictability for this entire time. Beyond frustrated.

Anyone with any similar experience I would appreciate your thoughts. I feel like a complete freak of nature!

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I am sorry that you are having such a hard time I am diagnosed only about a year and  half and am struggling also, I too have pain in the same places as you although not as severe. I am sorry that I don't have any answers for you but just wanted to give some support. 

 

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I've been gluten-free since 2003, but sometimes have severe pain in my back left shoulder blade quadrant.  I have no clue about if/how it might relate to gluten, but the only thing I've found to help relieve this pain is medical strength magnets.  I have a very old set I purchased years ago, but that supplier is NLA.  More recently, my husband purchased some from EBay for me.  I place 6 magnets all around the area, and within a day or so, the pain has gone away.  Hope this info might help - it's the only suggestion I know that would be "outside the box"...  So sorry for your pain - best of luck to you!

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I have haven't had pain as extreme as yours but I do have pain in that area of my left side. I have been to multiple doctors and have received all types of answers. The last time I went the doctor  put me on an antiboitic for Kidney infection which seemed to help but the pain comes in goes often I even have trouble sleeping because of it. I think it has to do with how messed up my entire GI system is. If you find a real answer please let share.

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Thank you all for your responses. Thanks Marty for the magnet suggestion, can't hurt to try. Rrmac,  Kamke, I will say that I also have mild to moderate daily upper left quadrant pain. It can wake me up at night also. GI doc believes that pain, specifically left abdominal area in front and between my left shoulder blade and spine, may be due to duodenum irritation / nerve damage. Lately, pain has been expanding throughout my chest and upper back.  But I have had many possible explanations ranging from fibromyalgia to GERD to hiatal hernia. I have seen numerous docs and specialists in the last 2 years trying to get to bottom of all of this. I'm not looking for miracles, but a plausible explanation for some of these issues would be great. I am tired of feeling like this body I've lived in for the first 40 years, has become an alien force all its own in the last 2 1/2.

For backround for those of you with similar issues: I do have lymphocytic colitis and autonomic dysfunction. I also have an intolerance to gluten-free oats. My celiac antibody blood counts did not come down, and actually increased after going gluten-free, until I eliminated oats from my diet. I take electrolyte supplements and a probiotic - both gluten-free - but have had numerous problems with any and all meds I've been prescribed and so I choose not to continue to try medications. 

Like all of you, I'm just looking for an explanation, not necessarily a miracle pill or cure. It is very frustrating seeing other celiacs have such amazing improvement and not achieving that yourself. 

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Onepercenter....   I read somewhere (can't remember) that a fair percentage of "gluten free" supplements and probiotics were tested and found to still contain gluten... just fyi...

I have rib pain (that's what I call it) that can radiate thru to my back.  It's horrible.  I feel your pain.  Mine has decreased dramatically over time after going gluten-free, but the most improvement was after removing grains.  I think the tiny amount of gluten in rice, etc. is just too much for me.  Of course, I do feel like a crazy person when I try to explain to others.  It's like trying to convince people that germs exist ::before:: microscopes existed.  I also had a pain on my left side when I would lay down on my left side.  That has also gotten better.  They removed an adenomatous polyp in my transverse colon... I wonder if it's my new grain free diet that has helped or the fact that it was removed?  So many questions, so little answers.  For the rib/back pain, I think there is a subset of celiacs with GERD symptoms, so I think that is what is maybe going on?  They did find patches of erythema (redness) in my lower esophagus.  Before I went gluten free I had 3 episodes where the pain was so severe in my ribs/abdomen/back I really thought I should go to the ER.

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Hi Plonkers,

I appreciate the response. I had forgotten about this post! I still get that pain and cramping occasionally, I think my insides go into a state of spasm if I get dehydrated. Your grain theory is interesting, I think there may be something there too. I've just completed new allergy food testing because of ongoing GI craziness as well as episodes of mouth/lip numbness that I'm trying to problem solve, and milk, soy, and tree nuts came up positive. Oats, which was positive, is now negative, and peanuts, which gives me extreme GI problems immediately after eating, is negative. It's so frustrating, but I'm developing a theory: my immune system freaks out over whatever I am eating a lot of. Went from gluten, to avenin, now milk protein and soy protein. I've realized I have a lot of other medical issues in the last several years, so much so that celiac disease has sometimes fallen off the bottom of my list of ailments. But at the end of the day, I think my immune system itself is one of the main issues, but no specialist I've seen knows what to do or say about it. 

Also, you are right about "gluten-free" supplements. I am extremely sensitive to gluten, so the 20ppm threshold doesn't apply to me. The probiotic I was taking is supposed to be gluten-free, but how do we know? I also wonder if it is the "wrong" bacteria for my crazy GI system, and how can we know which one is the "right" one?

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I do better not eating carbs, just nuts, seeds, veggies, egg whites, (Can't do meats as they do not break down). Sugars seem to cause bloating grains bloating in fatigue Do sometimes treat myself to a few bean chips, or tiny bit of gluten-free rice or oats. Just check my profile for list of issues.

Anyway my dietician told me to rotate my foods especially my fats and proteins. So for 2 weeks at a time will drop something from my diet completely like Almonds, cashews, hemp seeds, pumpkin seeds, flax seeds, chia seeds, coconut, etc. and just remove them from my diet completely for that time. I also try to rotate my sources of greens and the small amounts of fruit I can tolerate, I was told this will help prevent getting more allergies and intolerance.

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I am sorry to hear that you still have no answers I agree with Ennis_TX rotating foods is a good idea I also test positive to allergies for the foods I am eating the MOST of and it has to do with LEAKY GUT SYNDROME and also YEAST OVER GROWTH. 

I do best grain free (i eat them occasionally) some other things to look at 

Silent acid reflux I get it bad if I eat too much dairy

and for the lip numbness check out oral mouth syndrome / cross allergies I get that when I eat melon during ragweed season or nuts when the trees are in pollen. I can eat these foods any other time of the year.

Blessings Diane

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On 11/2/2015 at 1:59 PM, Onepercenter said:

I am hoping someone could possibly offer up ideas on several episodes I've had. First off, I am one of those Celiacs that is extremely sensitive. I've been told by my GI doc, 20ppm doesn't apply to you. Also, I have had chronic upper back and upper left quadrant pain intermittently for the last several years. So, with that said, serval months ago I accidentally ate a few bites of a regular burrito. I realized it because after bite one, horrible pain just to left of stomach (a chronic trouble spot for me), second bite the pain went through to my back (another chronic trouble spot) third bite so painful I went and got the wrapper out of garbage and realized my error. An hour later the vomiting/diarrhea started and lasted for about 5 hours. At the end of this time, I suddenly had pain so intense in my upper back I couldn't move. The pain was basically from bottom of ribs to base of neck and excruitiating, equal to no med childbirth with too much pitocin. It lasted about an hour and then subsided. Now I've had this pain happen twice just in the last 3 days. Once after possibly being cc'd, and then again 24 hours later with no possibility of gluten or cross contamination. The second episide sent me to the ER with pain in my chest and back that was absolutely crushing - and I got no answers whatsoever. I have been gluten-free almost 2 years and have had no predictability for this entire time. Beyond frustrated.

Anyone with any similar experience I would appreciate your thoughts. I feel like a complete freak of nature!

I have been experiencing spinal pain, joint pain that moves to different joints at different time for no apparent reason, head tremors and migraines for about 8 year now. I've been to many Doctors trying to get help. Only one, most recently helped me with a daily medication that has helped control my migraines with an anti seizure medication. of course my insurance won't cover it and its extremely expensive! The medication had been controlling most of my symptoms fairly well until I went on vacation a few weeks ago.  My husband and I were eating out most meals and I was having terrible stiffness in my spine and neck and felt as though I was 90 years old when I tried to get out of bed the next morning. This was the same every morning. When I started trying to figure out what was different, it was my diet. Breads, pastas and pretty much anything I felt like eating. This was the only different behavior. So, I was so miserable, I stopped eat any grain products. The next morning I woke symptom free. Feeling much improved. Something else that bothers me is potatoes and rice. bloats my stomach. The challenge is figuring out how to stay away from harmful ingredients. Corn and Wheat seem to be my biggest irritant.  Interestingly enough, I went on a low carb diet to lose weight,  years ago and didn't eat any carbs for almost 1.5 years. It seems most of my problems have been showing up after this radical low carb diet. Did my system just become intolerant to the foods that I  withheld? Regardless, I know I suffer unbelievable physical pain when I consume this food. I will be making an appt to be tested for Gluten sensitivity and maybe now, Celiac too.  

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On 2/9/2017 at 8:25 AM, Ennis_TX said:

I do better not eating carbs, just nuts, seeds, veggies, egg whites, (Can't do meats as they do not break down). Sugars seem to cause bloating grains bloating in fatigue Do sometimes treat myself to a few bean chips, or tiny bit of gluten-free rice or oats. Just check my profile for list of issues.

Anyway my dietician told me to rotate my foods especially my fats and proteins. So for 2 weeks at a time will drop something from my diet completely like Almonds, cashews, hemp seeds, pumpkin seeds, flax seeds, chia seeds, coconut, etc. and just remove them from my diet completely for that time. I also try to rotate my sources of greens and the small amounts of fruit I can tolerate, I was told this will help prevent getting more allergies and intolerance.

I'm just curious if you ever did a low carb diet, before your problems started? I believe I messed my system up dieting to extreme and just looking for others that may have similar experiences.

 

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51 minutes ago, stephinva said:

I have been experiencing spinal pain, joint pain that moves to different joints at different time for no apparent reason, head tremors and migraines for about 8 year now. I've been to many Doctors trying to get help. Only one, most recently helped me with a daily medication that has helped control my migraines with an anti seizure medication. of course my insurance won't cover it and its extremely expensive! The medication had been controlling most of my symptoms fairly well until I went on vacation a few weeks ago.  My husband and I were eating out most meals and I was having terrible stiffness in my spine and neck and felt as though I was 90 years old when I tried to get out of bed the next morning. This was the same every morning. When I started trying to figure out what was different, it was my diet. Breads, pastas and pretty much anything I felt like eating. This was the only different behavior. So, I was so miserable, I stopped eat any grain products. The next morning I woke symptom free. Feeling much improved. Something else that bothers me is potatoes and rice. bloats my stomach. The challenge is figuring out how to stay away from harmful ingredients. Corn and Wheat seem to be my biggest irritant.  Interestingly enough, I went on a low carb diet to lose weight,  years ago and didn't eat any carbs for almost 1.5 years. It seems most of my problems have been showing up after this radical low carb diet. Did my system just become intolerant to the foods that I  withheld? Regardless, I know I suffer unbelievable physical pain when I consume this food. I will be making an appt to be tested for Gluten sensitivity and maybe now, Celiac too.  

Welcome!  Here is information about testing for celiac disease, but.....you HAVE to be consuming gluten daily or all tests will be negative.  ?

http://www.cureceliacdisease.org/screening/

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3 hours ago, stephinva said:

I'm just curious if you ever did a low carb diet, before your problems started? I believe I messed my system up dieting to extreme and just looking for others that may have similar experiences.

 

My symptoms where mostly gastric and quite mild, just random puking, 5-7day constipation, and extreme fatigue before a huge drinking binge that caused to become much worst with gluten then triggering neurological and nervous system issues where my system would also attack my nervous system, brain, etc. afterward. And the gastric issues then flared to hell where they would lay me out for days with cramping and rotating D/C.  Actually spent a few years thinking I was dying before I got the celiac diagnosis.

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