Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recently Dx Celiac Struggles W/ Side Effects


pixespirit

Recommended Posts

pixespirit Rookie

Greetings,

I am looking for support from others who may have gone through similar experiences. I need to know if what I'm going through is normal. Any feedback is appreciated.

I'm a 37 year old woman who was diagnosed (dx) w/ celiac disease Jan. 15, 2010. Upon receiving the dx, I changed my diet IMMEDIATELY. I've been experiencing loose stools since the beginning of December 2009, and I continue to have it today. My food moves through me within one hour. Everything I've read indicates that people start feeling better w/ more energy after changing their diet. I have yet to experience that 2 1/2 mo. later. In fact, I'm more lethargic each day. I got B12 shots several times over the past 6 months, but I need to lay down on a daily basis. I am a professional and I'm in graduate school working on my second graduate degree. I am also a mother and wife. Children were tested for Celiac, and thankfully both were negative. In addition to going gluten free, I cut out a great deal of sugar and soda. Additionally, I gained weight back in November and I continue to hold onto despite the new rabbit eating diet. I've called my dr. several times. He's sending me an order or more blood work to see if the Spru is decreasing. I do yoga when I can and would do it three times a week if my schedule allowed for it...but other duties call---sadly. I saw a nutritionist who gave me good idea's and helped me work through my sweet tooth addiction. Honestly, the loose stools and lethargy are driving me NUTS! I can handle the diet...but going to the bathroom 4-6 times a day and NEEDING a nap on a daily basis is not working for me.

Additional health issues include:

Life long allergies (environmental)

Gull Bladder removed 9 years ago

3 sinus surgeries

Ideas? Suggestions?


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



Celiac.com Sponsor (A8-M):



Lgood22573 Rookie

The only thing I can offer is this. My father and brother both had their gallbladder removed and their food travels through them much quicker than it did before the surgery.

pixespirit Rookie

The only thing I can offer is this. My father and brother both had their gallbladder removed and their food travels through them much quicker than it did before the surgery.

Thanks--Sadly, up until December 2009, this was not an issue for me. I just happen to notice a trend with Celiac and Gull Bladder which is why I shared...Looking for magic fix :)

ravenwoodglass Mentor

Is your house gluten free? Have you done the kitchen things that need to be done like a dedicated toaster, no cooking with wheat flour even for others, restricting where others eat gluten foods to help keep crumbs down etc? Have you checked all meds OTC and script, script drugs that are generics need to be checked at each refill, supplements, some will say gluten free but still have wheat or barley grass which really is not safe for us. How about your toiletries and cosmetics, those should be gluten free also.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    2. - badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    3. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    4. - badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    5. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,739
    • Most Online (within 30 mins)
      7,748

    gexewib
    Newest Member
    gexewib
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      If you're more comfortable starting slow, that's fine, but do increase your dose to 500 mg per day as quickly as possible.  The World Health Organization recommends 500 mg thiamine HCl per day when deficiency is suspected.  Dr. Lonsdale had researched high dose thiamine for decades, and he has used higher doses, 1 to 3 grams in some cases.   Like I explained above, it's at that 500 mg level or higher that passive diffusion happens and thiamine can get into cells.  Inside the cells, thiamine turns the mitochondria back on.  Mitochondria produce energy the cells use to function.  I had been taking a multivitamin containing thiamine HCl regularly and still had become deficient.  Malabsorption of celiac disease really affects vitamin absorption.  I bought a bottle of thiamine HCl.  I was skeptical, too. I thought it couldn't be that easy.  I took 500 mg all at once.  I had improvement within minutes.  I couldn't believe the sensation of energy spreading to all parts of my body.  My brain felt like it was lifted out of a sub-sub-basement by an elevator and lights were coming on, floor by floor, of a skyscraper.  It was mental improvement, mental clarity.  Thiamine is needed for nerves to transmit electrical impulses, so the more nerves transmitting electrical impulses, the more my brain started working better.  The better my brain started working, the better I felt physically.  My muscles had more energy.  I wanted to get up and do stuff.   P.S. Questions are welcome.  "there's no poverty like ignorance, no wealth like knowledge". Keep learning!
    • badastronaut
      Thanks! I think I'll start slow. See what happens. Should I notice the thiamine working almost straight away if I'm really deficient? What kinda of difference did you notice? More mental? Of also physical in the sense of more energy?    Sorry for all the questions! 
    • knitty kitty
      Absolutely no danger of overdosing on the stuff.  Thiamine is nontoxic, and safe.  I had gotten to 1000 mg of Thiamine HCl a day at one point.   Do continue taking the multivitamin with the other B vitamins.  You may want to add a magnesium supplement because magnesium and thiamine make enzymes together.  I like Magnesium l-Threonate (Neuro-Mag by life extension).  You may want to add a B Complex in addition to the multivitamin (take them at different times).  All the B vitamins are water soluble.   With Thiamine HCl, there's a "magic moment" about 500 mg, where sufficient thiamine can get into the cells by passive diffusion, and the difference is amazing.  In thiamine insufficiency, the thiamine transporters (special gates into the cell) shut down.  Thiamine cannot get into the cells until there's a higher concentration outside of the cell.  Once that happens, the  thiamine can get through and go to work inside the cells.   If you're brave, start with 300 mg at one meal and 200 mg at the next meal.  Increase as you feel comfortable.  You may want to stay at one amount for a few days before increasing again.  Just keep adding another 100 mg as long as you keep feeling improvement.  If you feel uncomfortable, skip the next dose.  Thiamine HCL is water soluble and excess is easily excreted.  Don't take thiamine close to bedtime because you may feel too energized to sleep.   Thiamine HCl may feel like riding in the back of a pick up truck on a gravel road.  Benfotiamine feels like you're in a chauffeur driven Rolls Royce.  TTFD feels like you're driving a Lamborghini.  You'll get there no matter what kind of thiamine is taking you there.  Just keep taking it.  The health improvements can be very subtle, but you'll notice in the long run.   I started with 500 mg of Thiamine HCl, to see what would happen and had amazing improvement within an hour.  I took 300 mg with each of two meals and 100 mg with snacks.  I eventually added in Benfotiamine (250 mg  a couple of times a day) and reduced the thiamine HCl.  Later I added in TTFD (50 mg) several times a day.  Just experiment and see what feels right for you. Everyone is different and has a different level of deficiency.   I kept having additional improvement with each type of thiamine.  I've taken thiamine for almost fifteen years now.  I still take all three kinds on maintenance doses.  You have to experiment and see which ones work best for you in which combination.   I'm right here if you need anything.   You'll be fine.
    • badastronaut
      Thanks so much for your replies! no danger of overdosing on the stuff? or having the other B levels going out of whack? I do take a multivitamin with all te other B vitamins at the RDA level. I have bought the HCL version of Thiamine. How long do you need to use the Thiamine? a short periode on high levels and then back to a maintenance dosage?
    • knitty kitty
      Kudos for trying thiamine! On the ingredients label it should say if it's thiamine hydrochloride (thiamine HCl) or thiamine mononitrate or something else.   Thiamine mononitrate is shelf stable and not easily utilized in the body.   Yes, go ahead and try a whole 100 mg tablet.   Take with a meal.  Don't take close to bedtime.  Tomorrow take a 100 mg tablet with two meals. The next day take two 100mg tablets at one meal and 100 mg at second meal.  Keep increasing in this manner as long as you notice improvement.   When I first started with thiamine hydrochloride, I felt like the lights in my head were being turned on floor by floor like in a tall skyscraper.  It's just the brain working properly with sufficient thiamine.  I worked up to 1000 mg a day.  Lots if tablets.  Benfotiamine and TTFD are stronger and are utilized easier, so not as many milligrams ate needed.   I'm happy to answer any further questions!  
×
×
  • Create New...