Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Think I'm Going Crazy

philsguy94

Recommended Posts

philsguy94 Newbie
philsguy94
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted
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 Enthusiast
sddave
Posted

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 Grand Master
kareng
Posted
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 Enthusiast
sddave
Posted

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

GFinDC Veteran
GFinDC
Posted
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 Experienced
Victoria1234
Posted
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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


philsguy94 Newbie
philsguy94
Posted
  • Author
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! 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
    2. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    3. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    4. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    5. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748
    Teagan
    Newest Member
    Teagan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.