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Wonderful News

jayhawkmom

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jayhawkmom Enthusiast
jayhawkmom
Posted

I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!

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Sarah8793 Enthusiast
Sarah8793
Posted
I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!

This is so wonderful to hear!! :):) Happy for your daughter!

Sarah

angel-jd1 Community Regular
angel-jd1
Posted

Congrats. I'm sure you are breathing a sigh of relief!!

-Jessica :rolleyes:

jerseyangel Proficient
jerseyangel
Posted

Wonderful news! :D

wolfie Enthusiast
wolfie
Posted

Wow....great news! :)

lonewolf Collaborator
lonewolf
Posted

That's great to hear. You must be so relieved to find out what can help her be healthy!

zip2play Apprentice
zip2play
Posted

That is great news! How exciting for you all!

I see your ID is jayhawkmom. You a KU fan? Live near Lawrence KS? That's where I live. Has your 8 year old been tested?

Monica

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Cheri A Contributor
Cheri A
Posted

Congrats to you and your dd!!

jayhawkmom Enthusiast
jayhawkmom
Posted
  • Author
I see your ID is jayhawkmom. You a KU fan? Live near Lawrence KS? That's where I live. Has your 8 year old been tested?

Hi Monica. Yes, big KU fans, yes...we live near Lawrence - we are in the KC Metro. My 8 year old was tested a few years ago, but not recently. He doesn't have any outward symptoms but I do (now) realize that it's not necessary to HAVE outward symptoms. At 2, his pediatrician sent us for testing since he hadn't really gained much weight between 1 and 2. Then again at 5 we were sent for testing due to behavioral issues. They did some sort of peptide tests looking for "problems" related to gluten/casein.

But, I'm starting to have concerns about my baby. That's a whole other story.

Tori's Dad Apprentice
Tori's Dad
Posted

Awesome! It's amazing how quickly they start to gain weight. Our 5 yr old weighed 30 pounds on May 22 when she was diagnosed. By June 22nd she had gained 3 lbs. That's 10% of her body weight.

Nikki2003 Contributor
Nikki2003
Posted

That is great. Can I ask you how long she was on the diet before she started gaining and doing better?

THanks for any answers

Braunson's-mom Rookie
Braunson's-mom
Posted

Hi since you all are for Ks (I live 30 mi south of Salina) who do you dr with. We had Dr San Plablo at Children Mercy and didn't like him at all. We finally just put him on a gluten-free diet and then had sucess. Please let me know of a good dr because in 20mo of a gluten-free diet we have never had a check up. My ped would like to know if we are on the write track. Since putting Braunson on the diet my 9yr old and my self have all started the gluten-free diet. We still have 3 children not on it and my husband. My nephew last week was started on the diet. With great success. None of us have a celiac diagnosis but all have had postitive dietary change.

jenvan Collaborator
jenvan
Posted

That's great! Keep up the good work mom! :D

taz sharratt Enthusiast
taz sharratt
Posted
I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!

oh well done you !! im thrilled for you too, this is fab news.i have a 5 year old to who is patly sighted and when things start to turn aroung for them its the best and you just wanna shout it from the roof tops. great!!!!

zip2play Apprentice
zip2play
Posted

I too cannot suggest a KS doctor. MY GI Dr would completely disagree with me having gluten issues. He was full of CRAP! He felt, negative biopsy, NO ISSUES!

But, positive diet response....to me proves it!

Jayhawk, can your 8 year old go gluten free to see if it helps or changes things?

Funny thing, we live here in Lawrence, have for 10 years. My husband graduated from K State. WE have a 7 year old boy that EATS/SLEEPS/BREATHS KU! As you know, K State and KU polar opposites! I just have to sit back and laugh at it all! I am a Missouri girl! ;)

Monica

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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.

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

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

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      Contact them.
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