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

Prayer Request

Fiddle-Faddle

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted

Mamaw,

It was so good to see your post! I'm relieved you're doing better and will be able to go to Florida after all. Get lots of rest down there in the sunshine :D

Continuing to send lots of prayers, hugs and good thoughts your way!

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

Celiac.com Sponsor (A8-M):


Mtndog Collaborator
Mtndog
Posted

Prayers and hugs for your continued recovery and I hope Florida is warm and gluten-free for you! Rest! Hugs, B

  • 1 month later...
mamaw Community Regular
mamaw
Posted

Hi All

Well I want to THANK all of you who took the time from your hectic lives to pray for me!

I made it through Disney with my grandchildren!!!

First off--- Disney rocks.... We did the dining plan & booked our meals in advance since there were four of us gluten-free....We LOVED the Boma in Animal Kingdom. Supper was soooooo excellent.... T.J. one of the chefs was outstanding.I can't say enough good about this place.... Another for lunch was Toy Story Pizza (Amy's pizza). Cosmic Ray's was nice also. I think I gained ten pounds.... brownies, cookies, zebra domes, choc. cake! WOW.

I think the dining plan is the way to go , worth every penny..... one place even reminded us to use up any leftover passes.....

I did get very tired in the afternoon but made it through with a few rest periods......

Now to my ever changing roller- coaster thyroid..... you know I started out hypo about two years ago then moved to hyper ( grave's) Goiter now..... Doctors started me on many things but had terrible reactions. I did tolerate PTU (12 pills a day). I went to see doc today to check on my latest bwork. --- now it appears I'm back into hypo..... starving all the time even tho I just ate, gaining weight ( I think you all know the drill). Tired beyond tired!!!! I still am not positive I want to do RAI but it seems like my only option..... I go for a thyroid update again May24th. if it is still okay I swallow the RAI on the 25th. surgery is too risky for me at present. I was told I could continue the PTU for another year but most likely I still would have to do the RAI at that time.

I want off the coudamin, lopressor,, & diovan ....... since the thyroid effected my heart ( no permanent damage yet) I have a good chance of no permanent heart damage.

I stopped the PTU today so if all goes well next week , well who knows! Doctor stated that I could start immediately having a thyroid storm all over again..... He finally admitted that he has never seen anyone as sensitive as me. I'm hoping that since I'm still on the lopresser, & coudamin yet that will not happen....

In the back of my head I'm still thinking I could be worse once I swallow the Rai pills.....I guess at this point I have to do alot of reflecting on this thyroid journey....it was a ride I wish not to ever repeat.....I'm truly torn over this... I know some have had so much trouble after the Rai & others feel like a million bucks after....any words of pros & cons are welcomed at this point!!!!

Again blessings to all & THANKS!

mamaw

georgie Enthusiast
georgie
Posted

mamaw, What do you take for your Thyroid ?

mamaw Community Regular
mamaw
Posted
mamaw, What do you take for your Thyroid ?

Hi Georgie,

At present the docs have me on PTU- 12 pills a day.

AndreaB Contributor
AndreaB
Posted

Sandy,

PM Rachel--24. She's had the RAI and can talk to you about that. Things she's learned etc. :)

georgie Enthusiast
georgie
Posted
At present the docs have me on PTU- 12 pills a day.

For Graves ? Have you got your original blood test results that confirm that you have Graves. I know this sounds bizarre but I have heard of so many that get misdx , and have RAI unnecessarily. I just want to make sure you are aware of the misdx that happen.

Have you given any thought or researched what you will do after RAI ? Will you take a complete Thyroid med like Armour, or a T4/T3 combo ? STTM has a Forum for people with RAI issues , and coping skills for post op.

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

Celiac.com Sponsor (A8-M):


debmidge Rising Star
debmidge
Posted
mamaw, What do you take for your Thyroid ?

Georgie: Thanks for showing the stopthemadnessthyroid site....I too take Levoxyl and still feel tired, dry etc. too bad we can't just go into pharmacy & get Armour without prescription. I now want to try it. (I have hypo thyroid and nodule issues).

Hope you're feeling better mamaw....

Deb

annaleeb Newbie
annaleeb
Posted
:( Hi, everybody.

Mamaw (Sande) emailed me that she was hospitalized with sudden major thyroid problems. Apparently, her thyroid suddenly became super-hyper, pumping out massive amounts of hormone that sent her heart into afib. I got the feeling from her that the doctors didn't seem to know what's causing this or what to do.

So please join me in some prayers on her behalf. Or post here if you have any clues on why a gluten-free celiac would suddenly develop this.

Thanks so much.

I will certainly add her to my prayer list. That was very sweet of you to let us know what her situation is.

mamaw Community Regular
mamaw
Posted

Boy, did I get blasted from the endo doc!!!! He is a very strong advocate of synthoid & nothing else. I asked or mentioned armour & he blew his top & stated in a stern voice that it should be removed from the market immediately.. He is very mainstream & hates alternative docs or ideas. I just keep telling him that there is a place for both treatments in todays lifestyles....

I have tried to ask many ????'s on stopthethyroidmadness site but no one ever answers & I have trouble even accessing it at times so I gave up....I have read alot on there....

I'm now praying that this will work for me.... the RAI......

Since I stopped the PTU cold turkey (doc said too) I have no more or less pain in my feet. I thought I had heel spurs along with plantar fasacites... so bad at times I could not bear my weight... but since I stopped the PTU the pain is getting less & less.Of course again I was told that is not a side effect of taking PTU.

I'm so tired at this point of the game I almost don't care anymore. I've lost my will be fight this.I only make it about four hours before I have to rest, then I'm good for a few more hours...

Actually I do need to e-mail Rachel 24 but this is it for tonite-- just to tired to do so....

thanks to everyone

blessings

mamaw

AndreaB Contributor
AndreaB
Posted
-- just to tired to do so....

Take the rest you need and don't worry about your doctor. Mainline is very intimidated by the natural side of medicine it seems. I'm not surprised you found hostility.

Glad to hear removing the one med is taking away some of the discomfort you were going through.

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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.