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Do Kids Only Get Reactions After Being Gf?

Nikki~Nathan&Danielle

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Nikki~Nathan&Danielle Rookie
Nikki~Nathan&Danielle
Posted

I've been doing a bit of reading here today since my 2.5yr old ds has just been diagnosed via blood tests as having celiac disease. My question is: up until now he's just had some symptoms (soft pale undigested food in his stools as the main symptom), when I read of others here having bad reactions when they've been glutened, is this just something that happens because the body's been gluten-free? Or is it likely that those kids were getting reactions before being gluten-free as well?

TIA :)

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Since this disease has so many symptoms it can be really hard to tell unless you see major symptoms that would cause real concern. In my family (three of us diagosed- two as teenagers) we all showed symptoms before being diagnosed and show symptoms when glutened.

taweavmo3 Enthusiast
taweavmo3
Posted

I think for alot of celiacs, the reactions are worse the longer the body is gluten free. My daughter's first gluten accident after being on the diet for a month or so was not that bad. But this last reaction was vicious, she was vomiting, running a high fever, very irritable, tired, etc. It's a sort of blessing, at least I know when she's ingested gluten. And, it serves as a reminder for her to stay clear of gluten treats. Last night she was begging dh to take her to her brother's cub scout meeting (where she was glutened 3 weeks ago) and she was promising she wouldn't eat any more cookies! So, the last accident obviously still sticks out in her mind.

Jnkmnky Collaborator
Jnkmnky
Posted

There are 200+ symptoms of celiac disease. I've heard that they can morph throughout life. I believe you cannot predict what your reactions will be from glutening to glutening...or from decade to decade. Maybe some are hard-wired into your system, but you may find new and even more "fun" symptoms as you age. My son has a very leaky gut and I don't think that will change over time. He has peptide (opiate) events that alter his cognitive functioning while he's glutened. It's quite pronounced and damaging to his quality of life. Others may actually feel NOTHING. Crazy as that sounds, but in all cases there is vili damage and an auto-immune system response. The scariest aspect has to be the auto immune system response. I've heard from my own dr that immune system disorders "run in packs". He warned me very seriously to avoid any glutenings of my child as you increase the risk of developing ANY .... A N Y of the other horrifying auto-immune diseases each time you aggrivate your immune system. Once you turn on your auto-immune system and it identifies something benign in your body as an enemy... well, no one knows how to shut that off. Your immune system may identify your joint tissues as the offender, and you'll end up with rheumatoid arthritis... or your thyroid may be seen as the enemy, or you'll end up with M.S., or Lupus...or something even worse.

If your child has celiac disease- there's no negotiating. 100% gluten free for life.

Nikki~Nathan&Danielle Rookie
Nikki~Nathan&Danielle
Posted
  • Author

Thanks for your replies. I can't believe how much I've already learnt in the space of 24hrs! We are committing to thid diet as of this weekend and will be making our house gluten-free.

Carriefaith Enthusiast
Carriefaith
Posted

Everyone responses to gluten differently, it doesn't matter how old they are.

We are committing to thid diet as of this weekend and will be making our house gluten-free.
If you need meal ideas or recipes just ask :)
Guest Lucy
Guest Lucy
Posted

My son shows NO reaction to gluten....that I know of. He had one night since diagnosis (one year next week) that he woke up, threw up, and was fine after that. I can only attribute that to gluten.

I would never know if he had gluten or not.

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Paul-Bunyon Newbie
Paul-Bunyon
Posted

My girlfriends been making us some really good rice. I think its called Jasmine Rice. Its from Thai kitchen I think.

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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. 
    • 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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