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Kind Of Diagnosed For Celiac

JOBOW

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JOBOW Newbie
JOBOW
Posted

My story begins with constant pain under the sternum for the past 4 years. I am in relatively good shape, was slightly overweight before April, and for all intents and purposes, did not have any preexisting conditions. Have had all the heart tests, all OK, and blood pressure is always spot on. Chest X Rays have come and gone, still didn't have the cause. The pain would go from dull to severe, and sometimes it feels like I am "locking up", but whenever I take a deep breath, it goes away temporarily. Sometimes it moves to my pecs, and then other times it feels like it runs under my sternum. Then I would have heart palpitations, which only seemed to come on when I lay down at night.The family doctor even prescribed me some anxiety meds to help me sleep at night. I was going to a chiropractor, who would make me feel better for a few days or weeks. Back then, and even today, it seemed like Groundhog day.

Then this past April, I returned from a business trip in LA only to have severe abdominal pain. The following week, I had what i call an "attack" where I had a severe stinging pain in my upper abdomen that seemed to rush up into my chest and made me nearly pass out. Ever since, I struggle mightily even to complete my daily commute to work. I'll have random hot feelings come over my chest and upper abdomen, or the seatbelt rubbing on my sternum feels like a 50 lb block. My gut feels terrible on the drive. That first week I wound up getting a CAT scan because of the pain - they thought I had appendicitis! Fortunately (I think), nothing showed up in the CAT scan.

My family doctor initially diagnosed me with just indigestion, and we started an elimination diet that first eliminated dairy and then tomato products. 4 weeks pass, and I'm feeling no better. Still a mess driving to/from work, still having the chest pains, and now burping all time. I went back in the 4th week suggesting a new course - send me to a GI specialist. My family doctor said no, that nothing would be found and it would be a waste of time. (He was still adamant that it was indigestion).

Another 2 weeks go by and now it's worse - I have to drink a bottle of water on the drive back and forth or I feel like I won't make it. The "attacks" are now happening virtually every evening now, sometimes forcing me to stop halfway through my hour commute.

Mid June, I go back to the family doctor, this time making sure I see the other doctor in the practice. He starts to think that this isn't just indigestion, but perhaps a gall bladder problem. He sends me for a HIDA Scan, which indicates that my GB was draining poorly, yet when it did drain, it was doing so normally. (I really don't understand this). After we get the HIDA scan results, the following night I have a few beers with friends. The entire weekend was a waste. I could not function. I had some terrible abdomen pain, I had to sit hunched over. I couldn't interact with my wife and kids, felt terrible. The pain got so bad I went to the ER. Had chest pain and upper abdomen pain - of course the heart checked out just find again, they gave me some morphine, and did an ultrasound on the GB. The ER doctor ruled out the GB since there were no abnormalities in my ultra sound. So, they set me up to see a GI. They thought I had an ulcer.

Just had the Endoscopy last Thursday - the GI doctor took some biopsies and told me he's "almost positive that I have celiac disease". No GERD, no ulcers, no other upper GI tract issues.

So - i have been gluten free for five days and haven't noticed any improvement yet - my abdominal pain is much better but its the nagging pain under the sternum that is driving me crazy. I read on some celiac support sites that this pain I have could be linked to celiac disease. The readers on this forum seem to be very knowledgeable and all have your own war stories - so please tell me - has anyone experienced a similar chest pain that you were able to link to celiac disease? Thank you all.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board.

I think there are quite a few of us that have experienced that type of pain. Hopefully it will resolve for you once you have been gluten free for a while. You may want to drop dairy and avoid soy for a bit in addition to the gluten to see if that helps. After you have healed you can add them back one at a time to see if you can tolerate them. For now eat whole foods and try to avoid to much processed stuff. Meat, veggies, fruit, fresh chicken, fish, potatoes etc. will help keep your cross contamination risks down.

Pepto Bismal usually helps me when I get that pain. I get it from soy more than gluten. Don't know if that might help you.

Read as much as you can here and ask any questions you need to. I hope you are feeling better soon.

JOBOW Newbie
JOBOW
Posted
  • Author

Just got the biopsy results - I am officially a member of the club.

ravenwoodglass Mentor
ravenwoodglass
Posted

Just got the biopsy results - I am officially a member of the club.

While having celiac is not a good thing at least you know for sure now.

Welcome to the club and feel better soon.

beachbirdie Contributor
beachbirdie
Posted

Just got the biopsy results - I am officially a member of the club.

Well, I'm sorry you're in the club, but I'm very glad you have a good answer and the members here are wonderful. Hopefully you will find great improvement in how you feel over the next few months. Not everyone feels great instantly, so have patience. :)

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

My story begins with constant pain under the sternum for the past 4 years. I am in relatively good shape, was slightly overweight before April, and for all intents and purposes, did not have any preexisting conditions. Have had all the heart tests, all OK, and blood pressure is always spot on. Chest X Rays have come and gone, still didn't have the cause. The pain would go from dull to severe, and sometimes it feels like I am "locking up", but whenever I take a deep breath, it goes away temporarily. Sometimes it moves to my pecs, and then other times it feels like it runs under my sternum. Then I would have heart palpitations, which only seemed to come on when I lay down at night.The family doctor even prescribed me some anxiety meds to help me sleep at night. I was going to a chiropractor, who would make me feel better for a few days or weeks. Back then, and even today, it seemed like Groundhog day.

Then this past April, I returned from a business trip in LA only to have severe abdominal pain. The following week, I had what i call an "attack" where I had a severe stinging pain in my upper abdomen that seemed to rush up into my chest and made me nearly pass out. Ever since, I struggle mightily even to complete my daily commute to work. I'll have random hot feelings come over my chest and upper abdomen, or the seatbelt rubbing on my sternum feels like a 50 lb block. My gut feels terrible on the drive. That first week I wound up getting a CAT scan because of the pain - they thought I had appendicitis! Fortunately (I think), nothing showed up in the CAT scan.

My family doctor initially diagnosed me with just indigestion, and we started an elimination diet that first eliminated dairy and then tomato products. 4 weeks pass, and I'm feeling no better. Still a mess driving to/from work, still having the chest pains, and now burping all time. I went back in the 4th week suggesting a new course - send me to a GI specialist. My family doctor said no, that nothing would be found and it would be a waste of time. (He was still adamant that it was indigestion).

Another 2 weeks go by and now it's worse - I have to drink a bottle of water on the drive back and forth or I feel like I won't make it. The "attacks" are now happening virtually every evening now, sometimes forcing me to stop halfway through my hour commute.

Mid June, I go back to the family doctor, this time making sure I see the other doctor in the practice. He starts to think that this isn't just indigestion, but perhaps a gall bladder problem. He sends me for a HIDA Scan, which indicates that my GB was draining poorly, yet when it did drain, it was doing so normally. (I really don't understand this). After we get the HIDA scan results, the following night I have a few beers with friends. The entire weekend was a waste. I could not function. I had some terrible abdomen pain, I had to sit hunched over. I couldn't interact with my wife and kids, felt terrible. The pain got so bad I went to the ER. Had chest pain and upper abdomen pain - of course the heart checked out just find again, they gave me some morphine, and did an ultrasound on the GB. The ER doctor ruled out the GB since there were no abnormalities in my ultra sound. So, they set me up to see a GI. They thought I had an ulcer.

Just had the Endoscopy last Thursday - the GI doctor took some biopsies and told me he's "almost positive that I have celiac disease". No GERD, no ulcers, no other upper GI tract issues.

So - i have been gluten free for five days and haven't noticed any improvement yet - my abdominal pain is much better but its the nagging pain under the sternum that is driving me crazy. I read on some celiac support sites that this pain I have could be linked to celiac disease. The readers on this forum seem to be very knowledgeable and all have your own war stories - so please tell me - has anyone experienced a similar chest pain that you were able to link to celiac disease? Thank you all.

Would you believe that I had the same pain that lead to my Celiac dx as well? For some reason, that type of "under the rib" pain is a common symptom of Celiac. It took about about 6 months for it to go away completely for me.

Welcome to the club! You are on the right track now. Hopefully you will see some more improvements soon!

Mom-of-Two Contributor
Mom-of-Two
Posted

3 years of bloating and pressure way up under my ribs is what led me to a celiac diagnosis. It too often felt like it was pushing up on my chest, I also had pain between my shoulder blades all the time- I had concerns about gallbladder since it's so common in women, but my dr kept saying it's not the gallbladder, ultrasound showed no abnormalities, and all blood work for everything was normal (pancreas, liver enzymes, etc) she kept saying I had IBS even though I had no bowel issues.

I have been gluten free 5 months now, and I will say I am not feeling perfect, but that upper pain is pretty much gone, pain between shoulders very infrequent.

Good luck, finding your answer can be the most difficult part!!

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LauraB0927 Apprentice
LauraB0927
Posted

I used to have TERRIBLE pains in my chest and upper back before going gluten free. No one could ever tell me what it was but at times I was convinced that I was dying. I would get cold sweats and hot flashes and couldn't stay in one place or else the pain just got worse. It felt like someone had a vice on my chest, or that a monstrous bubble had built up so much that my rib cage was about to explode open. I thought I was having a heart attack - not typical for a seemingly healthy 28 year old girl. It got so bad at one point that I was rushed to the hospital and the doctor's had to inject me with Ativan just to calm me down enough to examine me. But no one could give me answers - they gave me Pepcid and sent me home...EKG normal, ultrasound normal, no answers...

Now since being gluten free, I haven't had one of these attacks - thank god!!!! I can only attribute it to Celiac, but I was never able to find out for sure. Best wishes!!!!

GFinDC Veteran
GFinDC
Posted

Welcome Jobow, there's always room for more in the club! :)

My pain was mostly lower, below the belly button and left. although I had stomach pain also. Did they check you for ulcers? They should have seen that during the endoscopy if there were any. I'd ask the GI who did the endo about that.

If you do have an ulcer, try some mastic gum and cut out drinking for a while.

Some threads for fun reading below:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

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