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Complete Recovery?

Anthony22

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Wonka Apprentice
Wonka
Posted
My son was diagnosed at age 10. He used to beat up his sister constantly, He was very ill humored. He couldn't do his school work. He couldn't remember to bring his homework home. He didn't write his assignments in his planner. Teachers kept coming down on me because I wasn't making him do his homework, but I neither of us even knew he had homework. He was a complete air head. He was also totally skinny even though he would eat a ton. Then he started having bad chest pain and throwing up 10 times a day. Fortunately he has a wonderful doctor who diagnosed him quickly.

Now a year and a half later he has gained a ton of weight, grown a ton. He has stopped hitting his sister and is great humored and a joy to be around. He is doing great in school and handles all his homework himself. He hasn't thrown up for about a year. He does get a bit grumpy from time to time when I think he picks up a bit of gluten at school. He is coping with celiac disease wonderfully. It can be done.

My daughter was diagnosed this year at 13. I noticed a similar pattern that you described. She no longer torments her sister, so there is less fighting, she is less absent minded about school work (she actually had a pretty good student phone and ask HER some homework questions this weekend). Her exzema has cleared up completely (her hand used to look like raw hamburger) and her disposition is just happy now instead of sullen. It's so nice to have my daughter back.

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thleensd Enthusiast
thleensd
Posted
Hi everyone,

Not to be too negative, but it's getting a bit depressing for me to keep reading about people who have been gluten-free for so many month and years and are still having symptoms and all sorts of other problems. Is there anyone out there who can say that they've had complete cessation of all their symptoms after going on a gluten-free diet? I keep reading the "official" line that 99% of people with Celiac are able to live normal, healthy, symptom free lives after going gluten-free for a while. This certainly doesn't seem to be the case around here. After 2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed, cook everything from scrarch, and have checked every last little thing possible from pet food to shampoo to old pots and pans etc. etc. etc. etc. etc. etc. etc. etc. It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

Anthony

Thank you for posting this. I totally understand...and it's nice to have this community to tell us to hang in there. I trust it will get better. It is definitely tough to be in a tunnel when you have no idea how long it is or is there is light on the other end (thanks for that analogy!)

Best of luck. Hang in there.

Anthony22 Rookie
Anthony22
Posted
  • Author

I just wanted to post to thank the large number of you that have posted replies and sent private messages. Your stories, questions, and support is very encouraging and much appreciated. I hope we'll keep hearing from people who've recovered in the future . . .

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      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
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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.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • 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. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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