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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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    • Rogol72
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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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