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

Been Awhile

Roda

By Roda
in Coping with Celiac Disease

Recommended Posts

Roda Rising Star
Roda
Posted

I haven't been on here is quite some time and thought I would let everyone know how I am doing.  Celiac wise I'm doing great.

 

Last October I decided to take charge of my life and to do something about the chronic edema I had been suffering with for years.  I was tired, miserable and hated wearing compression hose.  My good friend drug me to a zumba class and that's all it took.  I have been doing zumba and spin classes ever since and hired a personal trainer back in Jan.  I have lost a total of 20 pounds and I'm the most fit I have been in years.  I also have been able to ditch the compression garments!

 

Of course the exercise has brought on it's own challenges.  Just when things started going good I started having issues with my heart rate.  Long story short, I've been diagnosed with IST (inappropriate sinus tachycardia).  It really hinders my activity level.  I'm not going to let that stop me though.  I'm currently under the care of a cardiologist. 

 

So all in all, I'm doing good.  I've missed this forum and hope to be on here more in the future.

 

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Glad to see you back Roda!

 

Sorry your heart is trying to impede your exercise -- but really glad to hear how exercise has helped you :)

answerseeker Enthusiast
answerseeker
Posted

I haven't been on here is quite some time and thought I would let everyone know how I am doing. Celiac wise I'm doing great.

Last October I decided to take charge of my life and to do something about the chronic edema I had been suffering with for years. I was tired, miserable and hated wearing compression hose. My good friend drug me to a zumba class and that's all it took. I have been doing zumba and spin classes ever since and hired a personal trainer back in Jan. I have lost a total of 20 pounds and I'm the most fit I have been in years. I also have been able to ditch the compression garments!

Of course the exercise has brought on it's own challenges. Just when things started going good I started having issues with my heart rate. Long story short, I've been diagnosed with IST (inappropriate sinus tachycardia). It really hinders my activity level. I'm not going to let that stop me though. I'm currently under the care of a cardiologist.

So all in all, I'm doing good. I've missed this forum and hope to be on here more in the future.

Have you read my post above yours? I was just diagnosed with IST and POTS both forms of dystautonomia. Are you seeing an electrophysiologist?

Roda Rising Star
Roda
Posted
  • Author

Answerseeker, yes I'm currently seeing an electrophysiologist. 

 

I've had similar episodes of this in the past.  Eight years ago they put me on metoprolol and I couldn't handle the side effects.   It seemed to only rear up once in a while after that time frame.  I tried several times over the years to exercise, but when I did, I had an intolerance.  So I ended up gaining a lot of weight and not doing much but my normal daily home and work activities.  I'm wondering if the swelling I had from the waist down(pitting at times) for the last few years is related somehow. 

 

The doctor I'm seeing now seems pretty knowledgeable about it.  I did the 30 day event monitor and said that it didn't show any abnormal electrical pathway, but did show sinus tach thus the IST diagnosis.   He wants to treat me conservatively and not do an EP study.  He had me taking Cartia XT for the last three weeks and while it lowered my resting heart rate, did nothing for the big and sudden rate increase when I do certain activities.  Exercise obviously triggers it very early on and even walking up my steps can cause it to jump up.  My stress test showed that my heart rate was up to maximum at only 4 min. and it took longer than normal to come back down.  He wants me to stop the Cartia XT and start on Bystolic.  I'm good with stopping the one, but when I called the manufacturer on the Bystolic, they told me it may contain gluten.  I'm obviously not going to take that.  I put a call in to the office explaining the problem but they haven't got back.  I was told it wasn't "life threatening" so I'm going to just ride it out till I hear back.  The previous medicine caused fluid retention and extreme tiredness. I was also told to avoid salt(I don't really consume a lot now) and other than the medicine that I can't take, I'm to follow up in 4 months.  I have noticed that if I don't consume about a gallon of water a day, that I retain fluid in my legs. 

answerseeker Enthusiast
answerseeker
Posted

Lol opposite of me. I'm on a high salt diet, but I have hypotension. They had me on a calcium channel blocker but took me off because it dropped my blood pressure even lower

Roda Rising Star
Roda
Posted
  • Author

Have you read anything about Ivabradine for IST?  Unfortunately it isn't FDA approved in the US.  It is in the UK, Australia, Canada, etc.  I wish it was available here.  It sounds pretty promising. 

 

Open Original Shared Link

answerseeker Enthusiast
answerseeker
Posted

My electrophysiologist mentioned it. He said it would be ideal but not available here. I'm currently taking fludrocortisone to increase my blood volume and he's hoping in turn that will help with the IST I have a follow up in April

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

Celiac.com Sponsor (A8-M):


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
      132,349
    • Most Online (within 30 mins)
      7,748
    Lulu530
    Newest Member
    Lulu530
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.