Think I'm Going Crazy

[philsguy94]

Long story long: Around this time last year I went to the hospital due to some minor chest pain and tingling down my arms. Everything checked out with my heart and I was sent home. A few weeks later I started having muscle twitches all over, brain fog, balance issues, and head aches. I went to the neurologist and had an EMG and MRI on my brain and everything came back fine. Saw a rheumatologist and all of my blood work came back normal other than minor low Vitamin D levels. Before all of this I had some stomach issues, IBS, acid reflux and I always kind of felt off and I never knew what it was. I Started looking a little deeper and now thinking it could be Celiac related. Seeing my GI next week, hoping for an answer because all of this is making me crazy. 

[Jmg]

29 minutes ago, philsguy94 said:

Long story long: Around this time last year I went to the hospital due to some minor chest pain and tingling down my arms. Everything checked out with my heart and I was sent home. A few weeks later I started having muscle twitches all over, brain fog, balance issues, and head aches. I went to the neurologist and had an EMG and MRI on my brain and everything came back fine. Saw a rheumatologist and all of my blood work came back normal other than minor low Vitamin D levels. Before all of this I had some stomach issues, IBS, acid reflux and I always kind of felt off and I never knew what it was. I Started looking a little deeper and now thinking it could be Celiac related. Seeing my GI next week, hoping for an answer because all of this is making me crazy. 

Hi and welcome

You may well be on the right track. All those symptoms could be gluten related. Just don't cut it from your diet just now, you need to be eating it regularly for accurate testing.

This post has some links you may find of use.

Best of luck!

 

[sddave]

I've had some similar issues.   Had a couple of rashes last year.  Had tingling in legs, muscle cramps during sleep, brain fog/imbalance late last.   Had stomach gurgling issues that got worse also late last year where I had trouble sleeping and stomach constantly was gurgling.  I 'think' my condition worsened because of stress of my declining health of a close family member.   But my stomach has never been back to normal.  I Just have stomach gurgling and occasional pain under right rib cage, gas.   I've gone gluten free and doesn't seem to help.

Now, after endoscopy and waiting gluten antibody blood results I may have celiac disease.   Could be IBS or gluten sensitive even though my GI doctor says I have celiac disease.   My GI doc sucks and will probably get a second opinion.   He has told me conflicting things about what is causing my stomach problems.

[kareng]

3 minutes ago, sddave said:

I've had some similar issues.   Had a couple of rashes last year.  Had tingling in legs, muscle cramps during sleep, brain fog/imbalance late last.   Had stomach gurgling issues that got worse also late last year where I had trouble sleeping and stomach constantly was gurgling.  I 'think' my condition worsened because of stress of my declining health of a close family member.   But my stomach has never been back to normal.  I Just have stomach gurgling and occasional pain under right rib cage, gas.   I've gone gluten free and doesn't seem to help.

Now, after endoscopy and waiting gluten antibody blood results I may have celiac disease.   Could be IBS or gluten sensitive even though my GI doctor says I have celiac disease.   My GI doc sucks and will probably get a second opinion.   He has told me conflicting things about what is causing my stomach problems.

If you were gluten free  - the endoscopy and antibodies tests won't be accurate.

[sddave]

I wasn't gluten free during endoscopy of blood test.

[GFinDC]

22 minutes ago, sddave said:

I wasn't gluten free during endoscopy of blood test.

Hi Dave,  The University of Chicago celiac center recommends 12 weeks of eating some gluten every day before the blood antibodies,  and 2 weeks before the endoscopy.  Hopefully your not great GI told you about that.  It is called a gluten challenge.

Celiac testing isn't perfect, so sometimes people don't get a proper diagnosis.  There is a test called ttg-IgA that is commonly given first.  But that is only one test, and there are several other antibodie tests they can and should do.  They are usually called a celiac panel, and include endomesial antibodies, IgG, and DGP IgA and DPG IgG.  Plus a total serum IgA test to be sure your body makes IgA antibodies.

Hopefully you'll get accurate results.  But no celiac test is 100%  guaranteed accurate so far.  They all have some possible error.  Usually the likelihood of false positives is low, and the likelihood of false negatives is higher.

Your symptoms do sound like they could be caused by celiac disease or NCGS.  Another good thing to check is your vitamin and mineral levels.  Celiac disease can cause malabsorption of nutrients which means we can be low on some important vitamins.

[Victoria1234]

On 6/2/2017 at 0:45 PM, philsguy94 said:

Long story long: Around this time last year I went to the hospital due to some minor chest pain and tingling down my arms. Everything checked out with my heart and I was sent home. A few weeks later I started having muscle twitches all over, brain fog, balance issues, and head aches. I went to the neurologist and had an EMG and MRI on my brain and everything came back fine. Saw a rheumatologist and all of my blood work came back normal other than minor low Vitamin D levels. Before all of this I had some stomach issues, IBS, acid reflux and I always kind of felt off and I never knew what it was. I Started looking a little deeper and now thinking it could be Celiac related. Seeing my GI next week, hoping for an answer because all of this is making me crazy. 

Sounds a lot like celiac. Keep us posted! When is your appt?

[philsguy94]

On 6/7/2017 at 6:32 PM, Victoria1234 said:

Sounds a lot like celiac. Keep us posted! When is your appt?

I had my appointment the other day. Having blood work done - getting tested for Celiac and also a wide range of vitamin deficiencies. Also having a stool sample done.  I'll keep this thread updated!