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Daughter told to go gluten free

Stacey grint
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Stacey grint Newbie
Stacey grint
Posted

Hi

my 15 year old daughter has been seeing a gastro specialist for the last year due to having pain in her throat when swallowing food.  She had an endoscopy in September last year and they didn’t find anything wrong in her throat but found her to be slightly anemic and found a small abrasion on her stomach lining (still waiting for an ultrasound on this). She was asked to do a number of blood tests last month including celiac.  We have had the results back and she was found to be slightly low on iron and folic acid and her celiac results were positive.  The only symptons of celiac disease she has is the low iron and folic acid.  The gastro specialist has recommended she do a gluten free diet for 3 months …. I’m just wondering as I have read a lot of positives can be false for people under 18. She has not other symptoms or stomach problems so I’m just wondering why she has been recommended to so this ?  Any comments on this would be grateful 

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trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Stacey grint!

Can you post the results of the specific blood test or tests done for celiac disease on your daughter? Please include the ranges for positive vs. negative as each lab uses their own scale.

When they did the endoscopy on your daughter did they biopsy the lining of her small bowel to check for damage to the villi that is normally a characteristic of celiac disease? The biopsies are sent to a lab for microscopic analysis. Many celiacs are "silent" and do not evidence GI distress or very little. I was one of them. If a biopsy was not done to check for damaged villi in the small bowel then it should be and that would require your daughter to be eating regular amounts of gluten for 6-8 weeks leading up to the procedure. The blood antibody tests is the first stage of testing for celiac disease and normally, if there are positive antibody tests, then an endoscopy with biopsy is done to confirm celiac disease. However, in the UK, if the antibody test scores were 10x normal the physicians will often forego the endoscopy/biopsy.

Edited by trents
KHL Rookie
KHL
Posted

Did the doctor ever mention Eosinophilic Esophagitis as a potential reason for the throat pain? It's another autoimmune condition and not uncommon for someone to have both conditions. 

knitty kitty Grand Master
knitty kitty
Posted

@Stacey grint,

Iron deficiency is a common symptom of Celiac Disease, especially in the early stages.  

I'm so glad doctors are recognising the connection now. 

Here's a science-y article about it...

Anemia in Celiac Disease: Prevalence, Associated Clinical and Laboratory Features, and Persistence after Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9604793/?report=reader

 

Difficulty swallowing can be a early symptom of deficiency in Thiamine Vitamin B 1. 

I had difficulty swallowing which only improved when I supplemented with Thiamine, B Complex, and magnesium glycinate.  I supplement Thiamine in the form Tetrahydrofurfuryl disulfide (TTFD), Benfotiamine, which has been shown to improve gastrointestinal health.  

Malabsorption in Celiac Disease causes vitamin and mineral deficiencies.  Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.  Discuss with the doctor the benefits of supplementing while healing.  

Keep us posted on your progress! 

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      iron digestibility

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      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
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      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
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