Jump to content
  • Sign Up

Rate this topic

Recommended Posts

I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have:

Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either. 

GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing. 

I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver. 

 so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal.

After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.

 Has anyone else had any thyroid issues that followed doing a gluten challenge?

 where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 

Share this post


Link to post
Share on other sites

Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).  

Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.    

I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget.

The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd.

I get palpitations when I am anemic.   

I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   

Share this post


Link to post
Share on other sites

Thank you for your comments. I also get these attacks during the day where I feel like I may pass out. I think this is my blood pressure tanking. It sometimes takes hours to feel better. Things go numb, vision gets weird, short of breath. Eating helps but it is almost as if my body has gone into shock. It takes awhile for the blood to move to where it should or something, I end up feeling sick and anxious. 

The burning pain was something that kept me pacing more then once during my gluten challenge! I thought it was my heart.  That thankfully has gone! To be replaced by a more dull nagging pain and painful to the touch sensation. 

I hope to find a good doctor with some knowledge soon. The last 7 months have been hell and not good for my young son to witness. 

Share this post


Link to post
Share on other sites

I am sorry that you are sick!

i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.  

I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years.

If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...