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I Wonder About This Pain?
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Hi everyone! :D This is my first time posting but I have been doing alot of reading here. I am being tested for celiac and am very confused about the symptoms. :( I am confident that my doctor ordered the test based on information I have given her over the past three years. I have had every test there is I am sure! My heart has been tested and I have had MRI and catscan to test for tumors and MS. I have alot of the symptoms that show up here on your board but one is not mentioned. My question is do any of you get pain between the shoulder blades that goes through you like a knife? I have episodes of this pain that stop me dead in my tracks. I call it white pain.....the kind that takes you over and makes you wish you could just die and get it over. :blink: I have had three children, naturally! When I have this pain I say I would rather be having a fourth child! It feels like a heart attack. My doc has checked into it and says my heart is normal and it is nothing to worry about ,but with this idea of me possibly having celiac I can't help but wonder if it could be connected. I am very confused about this disease and need some help sorting out what is caused by the food I eat and what is not related. I do get very dizzy and lose some of the feeling on my right side when I am not careful with my diet. I get horrible abdominal pain an feel soooo tired I cannot walk very far, I also have been suffering terrible migraines. I am sorry this is so long, I really have come to a point of total desperation.

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I'm not sure if your mystery pain is food-related or not. Are you keeping a food diary? If you write down everything you ingest and the timing of your symptoms, you might notice a pattern.

I doubt this is the same sort of pain that you have, but I have had a "mystery pain," too. I started experiencing it before I got pregnant with my first child, and I remember it being especially frequent during my second pregnancy, but I haven't had it in quite a while now. It was a throbbing pain that "blossomed" from the area right below my shoulder blades, just to the left side of my spine. It was intense, and my heart would pound and I would breathe heavily while it lasted (maybe 30 seconds?). I remember worrying that I had an aneurysm! Now I wonder if it might have originated in my stomach, instead. I'll probably never know!

Where exactly are you in the testing process? Do let us know when you have your results! Good luck!

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I just had this happen last week. It's got to be a weird coincidence, though. I was carrying a heavy object over my head at the time. All of a sudden, I had a stabbing pain in my back, right between the shoulder blades. It never went away though. I've had back pain ever since, for about a week. I have to think it's a muscle pull, not related to celiac, but you never know.

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I get this pain too. When I had my endoscopy they found a hiatal hernia and ulcers on my esophogus from reflux which is causing my pain. I also get some pain when swallowing at times, like the food is getting stuck (which it is).

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Just wondering... did your doctor check your gallbladder? I've heard that pain in your shoulder area can happen when you have stones, debilitating abdominal pains accompany.

Good luck in finding your answers.. hope you feel better soon!

Gretchen

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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