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

Turner Syndrome

draeko

Recommended Posts

draeko Apprentice
draeko
Posted

Hi Everyone,

My name is Melanie and I am new to this board. I have just been diagnosed with Celiac a couple of weeks ago, after many years of feeling unwell. I have 2 sons but loss a daughter 5 1/2 months in utero due to Turner syndrome. I am wondering if there is a link there? Does anyone have any information.

I also have a feeling that my 5 year old and my 2 year old have Celiac. The oldest is very tired all the time and feels worse after eating. My youngest is my main concern he has diarrhea since June and has somekind of skin problems, kinda looks like eczema. Both of their stomachs are very distended.

I have asked a couple of doctors to test them for Celiac but they both refused. I made yet another appointment with a doctor on December 13th and I am hoping to convince her to test my boys. What test would they perform? I read about blood tests in young children are inaccurate.

:D Thanks everyone for all your help..Looks like we have a good support group here!

Melanie

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

i wonder why some doctors refuse to run tests that parents request---kind of irritating. the fact that celiac is genetic is reason enought to do the test, symptoms or not. i tested all of my kids when we suspected one of them had celiac and we discovered that 2 more of them had it also.

taweavmo3 Enthusiast
taweavmo3
Posted

I tried posting earlier, but my 2 year old kept pushing buttons! Argh. I wanted to say welcome to the board. And I am so sorry for the loss of your daughter, I can't imagine going through something like that. I would keep searching for a doctor who will test your two boys. It may take a while, we've been through several pediatricians. I tried a new one this month after doing ALOT of asking around, and I think we have finally found a keeper. He automatically asked if everyone in the family had been tested, he didn't question if they had symptoms, failure to thrive, etc. He was also very thorough in wanting to make sure Emmie's hormones were in check since she is still not on the growth chart yet...and also mentioned that he wanted to follow up with her every 4 months to make sure she is staying healthy and growing well.

This guy was 100X more thorough than even our pediatric GI. I was blown away...he also gave me referrals for the specialists I had been fighting with our previous ped for (developmental ped and urologist). I'm sure he thought I was a blubbering nutcase b/c I wouldn't stop saying thank you and I was pretty close to tears.

Anyway, I'm rambling now! It really shouldn't be such a battle to get your boys tested, especially with you being positive yourself. I am lucky though in that we live close to Dallas, and have alot of specialists to choose from. If your choices are limited, keep fighting to get them tested, and make sure they do the right test. I can't remember the exact tests to ask for, but I know there are others on here who do!

Good luck to you!

momothree Apprentice
momothree
Posted

Greetings! I don't really know if this helps at all, but I have a friend who has a daughter with Turner Syndrome. Apparently, girls with Turner's are more likely to develop Celiac, and she has to have her daughter tested annually. Just a little info that you may or may not already know. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • 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. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Supplements for those Diagnosed with Celiac Disease

      By Scatterbrain · Posted

      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • 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.