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Gluten Free Girl

GlutenFreeGirlsMom

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GlutenFreeGirlsMom Newbie
GlutenFreeGirlsMom
Posted

Hello!

 

I am a mom to a little girl that I believe is gluten intolerant. She has had the blood tests done  - negative for Celiac, but positive for the genes. with *Very High* results for possibly developing Celiac. She is 6 years old. When she does gets Gluten,  We can tell because of headaches, and joint pain. She has been on a Gluten Free diet for over a year.  Before the diet, she was very ill. Chronic constipation, and failure to thrive.  I have had her to 2 specialist in our area. A pediatric GI doctor from St. Christopher's Hospital in Philadelphia, as well as Children's hospital of Philadelphia to see a pediatric Urologist. She is still a bed wetter, and will also have bouts with Encopresis.  I am at a loss to help her.  I am wondering if there are other parents that have been through what we have. Every time  we see a doctor, they give me a script for Miralax, and it is frustrating to say the least. I am wondering if there are any parents that may be able to give me some direction. Thank you for listening. :mellow:

 

Jennifer from PA

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notme Experienced
notme
Posted

currently, there are no tests for gluten intolerance.  if she has been tested (and had been eating gluten the whole time before testing) but she is better off the gluten, (and you said she is genetically predisposed) if it was my kid, i would let them do any other tests necessary to rule out other things.  then, if she is better without it, keep her gluten free.  you don't want to miss something else, but at the same time, if you can tell she is better and growing as she should, that's what i would do.  good luck and i hope you get it figured out  :(

cyclinglady Grand Master
cyclinglady
Posted

I would not worry about the bed wetting. Both my parents were bed wetters, one of their kids ( they considered themselves lucky), and two out of their five grandkids. They all out grew it by age 12. Thank goodness for the invention of pull-ups! I am the one with celiac and I was not a bed wetter, so I do not think it is related.

I can not comment about the encopresis but maybe it is like the bed wetting situation and she will out grow it. Some kids will only "go" in perfect conditions, like only in their own bathroom and no where else.

I hope you find your answers.

  • 2 weeks later...
LittleMama Newbie
LittleMama
Posted

Hello!

 

I am a mom to a little girl that I believe is gluten intolerant. She has had the blood tests done  - negative for Celiac, but positive for the genes. with *Very High* results for possibly developing Celiac. She is 6 years old. When she does gets Gluten,  We can tell because of headaches, and joint pain. She has been on a Gluten Free diet for over a year.  Before the diet, she was very ill. Chronic constipation, and failure to thrive.  I have had her to 2 specialist in our area. A pediatric GI doctor from St. Christopher's Hospital in Philadelphia, as well as Children's hospital of Philadelphia to see a pediatric Urologist. She is still a bed wetter, and will also have bouts with Encopresis.  I am at a loss to help her.  I am wondering if there are other parents that have been through what we have. Every time  we see a doctor, they give me a script for Miralax, and it is frustrating to say the least. I am wondering if there are any parents that may be able to give me some direction. Thank you for listening. :mellow:

 

Jennifer from PA

My younger son is being scoped at CHOP tomorrow. Sounds a lot like both my boys. If my little one is positive, we are having my older one tested. My little one tested positive for the gene and has IgA deficiency and they lost the IgG tests.... long story.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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