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Should I Be Doing More To Help My Son?

krisb

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krisb Contributor
krisb
Posted

Since Kevin's colonoscopy and scope the Dr. said to start the gluten free diet. I did that but is there more I should do to help him heal? He is anemic, I'm assuming from his ulcerated intestine's. I wonder if he should have a suppliment or probiotic. I have a multi vitamin w/flouride but they are so brightly colored and I'm not sure if they have gluten. I don't give them to him. I feel like he needs something but the GI didn't say. I go back to her in 3 weeks.

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nettiebeads Apprentice
nettiebeads
Posted
Since Kevin's colonoscopy and scope the Dr. said to start the gluten free diet. I did that but is there more I should do to help him heal? He is anemic, I'm assuming from his ulcerated intestine's. I wonder if he should have a suppliment or probiotic. I have a multi vitamin w/flouride but they are so brightly colored and I'm not sure if they have gluten. I don't give them to him. I feel like he needs something but the GI didn't say. I go back to her in 3 weeks.

<{POST_SNAPBACK}>

I'm sure you can call your GI and leave a message with her nurse with all of these questions. It does take time to heal, youth is on his side. Just make sure his calories are high protein/high iron to help his anemia, with vita C to help his body absorb the iron. And because of his malabsorption, you may want to ask about a multi vitamin/multi MINERAL supplement. Minerals are often overlooked, but very important too. Is he starting to feel better, I hope?

krisb Contributor
krisb
Posted
  • Author
Is he starting to feel better, I hope?

He says he is feeling better. He hasn't had any belly aches and it looks like he gained 2 pounds already! He hasn't been very gassy either. My younger boys were diagnosed the same time as Kevin. There belly aches are getting better too. They didn't go as long as my oldest with celiac so I believe there damage isn't as bad.

nettiebeads Apprentice
nettiebeads
Posted
He says he is feeling better. He hasn't had any belly aches and it looks like he gained 2 pounds already! He hasn't been very gassy either. My younger boys were diagnosed the same time as Kevin.  There belly aches are getting better too. They didn't go as long as my oldest with celiac so I believe there damage isn't as bad.

<{POST_SNAPBACK}>

Very glad to hear that! But I would try to leave some questions for your GI; if she's a good dr. she would understand your concerns and worries and address them w/o waiting for your next appt by having her nurse call you back or leave a written recommendation with the receiptionist for you to pick up later.

hilaryw Newbie
hilaryw
Posted
Since Kevin's colonoscopy and scope the Dr. said to start the gluten free diet. I did that but is there more I should do to help him heal? He is anemic, I'm assuming from his ulcerated intestine's. I wonder if he should have a suppliment or probiotic. I have a multi vitamin w/flouride but they are so brightly colored and I'm not sure if they have gluten. I don't give them to him. I feel like he needs something but the GI didn't say. I go back to her in 3 weeks.

<{POST_SNAPBACK}>

My daughter (newly diagnosed) is also anemic. We are supposed to be giving her iron. She couldn't tolerate it in liquid form so we give her Solaray cherry chewable multivitamins that have an adequate amount of iron. I called Soloray, they are gluten free. My daughter will have another CBC in 6 weeks, but I think her iron level must be better b/c she looks and feels so much better already. I would definitely want an iron supplement of some form if I were you. Call the doctor, I'm surprised he/she didn't prescribe something. Our doc. was concerned about the anemia (hemoglobin 9.6.)

krisb Contributor
krisb
Posted
  • Author
My daughter (newly diagnosed) is also anemic.  We are supposed to be giving her iron.  She couldn't tolerate it in liquid form so we give her Solaray cherry chewable multivitamins that have an adequate amount of iron.  I called Soloray, they are gluten free.  My daughter will have another CBC in 6 weeks, but I think her iron level must be better b/c she looks and feels so much better already.  I would definitely want an iron supplement of some form if I were you.  Call the doctor, I'm surprised he/she didn't prescribe something.  Our doc. was concerned about the anemia (hemoglobin 9.6.)

<{POST_SNAPBACK}>

He doesn't go back to the GI until the end of October. She is on vacation. Maybe I will bring him to the ped in the meantime. I have a lot of questions that aren't getting answered. I worry about him. I feel like he has so many Dr.'s but they all assume the other is taking care of him.

Kasey'sMom Enthusiast
Kasey'sMom
Posted

My dd Dr. suggested that I give her chlorophyl drops for low iron levels. He said she would probably not like the taste. :P I did however find a company that makes a mint flavored version and they confirmed it is gluten-free and soy free. Here's the company that has the mint chlorophyl.....

Open Original Shared Link

I haven't been able to confirm that Desouza's chlorophyl is gluten-free but the have a wonderful article about chlorophyl.

Open Original Shared Link

Also Probiotics can be very helpful for the intestines. :)

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tarnalberry Community Regular
tarnalberry
Posted
Since Kevin's colonoscopy and scope the Dr. said to start the gluten free diet. I did that but is there more I should do to help him heal? He is anemic, I'm assuming from his ulcerated intestine's. I wonder if he should have a suppliment or probiotic. I have a multi vitamin w/flouride but they are so brightly colored and I'm not sure if they have gluten. I don't give them to him. I feel like he needs something but the GI didn't say. I go back to her in 3 weeks.

<{POST_SNAPBACK}>

If he's iron-deficient anemic, then a multi-vit with iron is a good idea, or making sure he drinks orange juice or something else with vit C with meat or eggs. He shouldn't need flouride in his multi-vit, particularly if you live in an area where your water is flouridated, so I wouldn't worry about that. There are a lot of vitamins (without colors and additives), so you might want to spend a little while browsing a local health food store for something YOU are happy with. (The workers there can help, but they are not the fountain of knowledge that many try to pass themselves off as.)

Guest nini
Guest nini
Posted

When my dd first went gluten-free, we gave her a chewable multi vitamin that I had confirmed was gluten-free... I found it at Dollar Tree of all places... She also drank Pediasure (didn't really like it that much).

I have found a company (Market America) that has a line of supplements (Isotonix) that come in a powder form and you mix them with water in a pre measured cap/cup. They have a childrens "Might A Mins" and I take a digestive enzyme and b-12. Google Market America and you can find a rep through the website. It's kinda like Mary Kay or Avon, you have to find someone who sells it.

Indea88 Newbie
Indea88
Posted

Our Ped GI said Flinestones? There has to be a better multi for kids that is gluten-free. Ive been on the hunt as well. Havent found one yet....

Guest Lucy
Guest Lucy
Posted

don't flinstones contain gluten? I don't have a bottle handy, but I thought they did?

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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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