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My 16yr daughter was recently diagnosed

JuggaloDad
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JuggaloDad Newbie
JuggaloDad
Posted

It is only the very start of this journey but it's actually been one of the hardest things we have had to deal with as parents.she started complaining about her stomach and after months and test after test the diagnosis came back as Celiac disease but while this was happening she has been self medicating with THC and also started making showing signs of a eating disorder, we are in therapies of all sorts in relation to these issues and well I'm just reaching out to find any and all information tools and knowledge as at 16 my daughter is fighting the change but it will be with her for a lifetime so I just trying to do all I can do ... If anyone can help with anything like anything mentioned please reach out to me.....thank you all for existing 

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Scott Adams Grand Master
Scott Adams
Posted

I’m so sorry to hear about the challenges you and your daughter are facing. A celiac diagnosis, especially during adolescence, can be overwhelming, and it’s understandable that she’s struggling with the lifestyle changes it requires. Coupled with the complexities of self-medication and signs of an eating disorder, this is undoubtedly a difficult time for your family. It’s great that you’re already engaged in therapies—this is a crucial step. For celiac disease, connecting with support groups (like those from the Celiac Disease Foundation) and working with a dietitian specializing in gluten-free diets can help ease the transition. For the emotional and mental health aspects, family therapy or support groups for parents of teens with similar struggles might provide additional tools and comfort. You’re doing the right thing by seeking help and information—stay patient and compassionate with both your daughter and yourself as you navigate this journey together.

JuggaloDad Newbie
JuggaloDad
Posted
  • Author

Thank you Scott, it means a lot especially with the speed you responded.. In life I've learned that you got to be openminded and open to understand and adjust  .Thank you again I hope she will come around to the adjustment as it's not going away and it's for her own comfort and health in the long run....Thanks

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Welcome to the forum, @JuggaloDad,

Kudos to you for being such a concerned parent!

Gluten can attach to opioid receptors throughout the human body, including the brain.  Gluten in the brain can be attacked by tTg 6 antibodies.  This inflammation can cause ataxia.  TTg 6 antibodies are also found in diseases involving ataxia such as Alzheimer's and Parkinson's.  Serum Antibody tests for Celiac Disease check  for tTg 2 antibodies.  TTg 3 antibodies are found in Dermatitis Herpetiformis.  

THC can dislodge gluten from the opioid receptors in the brain and body, taking gluten's place on the opioid receptor.  THC is then easier to remove from the opioid receptors than gluten.  THC is being used medically in opioid addiction cessation.  THC has other benefits such as calming mast cells so they don't release histamine.  Histamine release from mast cells causes inflammation and is part of the autoimmune reaction in Celiac.  

Thiamine Vitamin B 1 is instrumental in brain and nerve health.  Opioid and THC use can deplete thiamine stores.  Malabsorption due to Celiac Disease can prevent those stores being replenished.   Early Thiamine deficiency disorder symptoms includes eating disorders such anorexia and bulimia.  Ataxia is improved with Thiamine.  Anxiety and depression are also improved with Thiamine.  Thiamine helps stop mast cells from degranulating and releasing histamine.  Gastroparesis and Gastrointestinal BeriBeri are improved with Thiamine.  Thiamine with Pyridoxine and Cobalamine have analgesic properties.  Thiamine in the form Benfotiamine promotes gastrointestinal health.  The form of Thiamine called TTFD (tetrahydrofurfuryl disulfide) helps immensely with the ataxia and neurological symptoms.

Doctors undervalue the benefits of supplementation with essential nutrients in Celiac Disease.  Correction of nutritional deficiencies quickly in Celiac is important to health and recovery.  Most blood tests for vitamin deficiencies are not accurate.  None the less, discuss supplementing with doctors and nutritionists.  

Do look into a low histamine Paleo Diet like the Autoimmune Protocol Diet developed by a Celiac, Dr. Sarah Ballentyne, shown to promote intestinal healing.  This is the diet that really improved my health along with supplementing the essential vitamins and minerals.  

After struggling with Gastrointestinal BeriBeri, Ataxia and eating disorders myself, TTFD has made a world of difference.  My blog has more information.  I'm happy to share what I've learned on my journey.

Edited by knitty kitty
Typo correction
Bernade Rookie
Bernade
Posted

Honestly My daughter has been gluten free for more then 8 years I never understood it,she has a thyroid issue and gluten knocks her down awful 😞 so being a parent I’ve understood what it means. Now I have celiac disease and I tell you it has been very challenging but I have felt so so much more comfortable eating gluten free and understanding all the effects it can have. 

Bernade Rookie
Bernade
Posted
5 hours ago, JuggaloDad said:

It is only the very start of this journey but it's actually been one of the hardest things we have had to deal with as parents.she started complaining about her stomach and after months and test after test the diagnosis came back as Celiac disease but while this was happening she has been self medicating with THC and also started making showing signs of a eating disorder, we are in therapies of all sorts in relation to these issues and well I'm just reaching out to find any and all information tools and knowledge as at 16 my daughter is fighting the change but it will be with her for a lifetime so I just trying to do all I can do ... If anyone can help with anything like anything mentioned please reach out to me.....thank you all for existing 

My daughter was diagnosed with autoimmune disease and has been gluten free for over 8 years it has been very challenging but it has been a wonderful experience and we together have learned a lot now we cook meals together go to places that are gluten friendly and honestly it’s is a lot easier than you think… everyone has there own journeys for sure never feel alone or down life has wonderful things that come along for more then we expect.💖

Wheatwacked Veteran
Wheatwacked
Posted

You could try CBD for her instead of THC, although I don't think it enhances the appetite the way THC does.  With anorexia appetine is everything.  CBD also attaches to the opiod receptors, without the psychotropic effect so it may help with the withdrawal from gluten.

There are lots of vitamin and mineral deficiencies caused by Celiac Disease the the doctors are often not aware of.  Vitamin D, Thiamine (B1). Also B2, B3, B5, choline and Iodine are very common and it takes larger doses at first to replenish than the minimum RDA.  Deficiency in these slows the healing process because they process glucose for energy and iodine is essential for replacing old and defective cells.  Especially when dealing with anorexia.  As her small intestine heals she will begin to absorb most of the other 20 essential vitamins and minerals will be fullfilled though diet.

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      iron digestibility

      By knitty kitty · Posted

      @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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      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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