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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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      Seeking advice on potential gluten challenge

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      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

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      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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