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janpell

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janpell Apprentice
janpell
Posted

Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.

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mommida Enthusiast
mommida
Posted

Glad things are working out better for your family.  Any question you can come up with someone here will tackle it.  (We have had ALL kinds of questions, so you might want to keep kids in the kids only sections.)

 

Keep an eye on the anemia.  There is a connection between Celiac and Pernicious anemia.  Pernicious anemia is caused when the gut lining (think Celiac damage) lacks the intrinsic factor to absorb vitamin B12.  So it is low iron, but not a lack of eating iron rich foods.  Current research is showing sublingual vitamin B12 can be as effective as B12 shots.  (when it comes to vitamin supplememts get the Methylcobalamin B12.  The other type is process with cyanide.  There is no known "toxic" level of B12 as too much would just be expelled from the body.

beachbirdie Contributor
beachbirdie
Posted

Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.

 

 

Your doc wouldn't test for celiac?  Sheesh.  There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally.  If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors.  You want someone in your corner, not someone you have to do battle with all the time.

janpell Apprentice
janpell
Posted
  • Author

We are on our second doctor. That is why I love this site! It gives me the confidence to move forward and not question what I am doing. I am in Canada so it is a different system with standardized care. That's the thing about the anemia - the nurse called to inform us and then went to ask the doctor when we should come for a retest and he said "no need". ????. We started with a Naturopathic Doctor today so I feel good. Will have to check out the kids forum - thanks.

chickpea77 Rookie
chickpea77
Posted

My doctor says he always checks anyone with low iron for Celiac Disease because it is often one of the major signs.

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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! 
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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. 
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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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