Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thinking About Putting Son On A Gf Diet...

Mjohnson73

Recommended Posts

Mjohnson73 Apprentice
Mjohnson73
Posted

Hi all...

I am thinking of putting my son alan who is very little (he weighs 34.5 pounds, is 39 inches tall and is almost 6 years old) on a gluten-free diet, but I am trying to wait until his endocrinologist says.. But I have not gotten a call back from her...*GRRRRR* (don't get me started on that!)....

Should I just go ahead and put him on a gluten-free diet, I am wary about doing it before they do any of the blood tests... and then what happens if his Blood work comes back Negative? I mean mine came back negative but I have had soooo much improvement on the gluten-free diet myself that It is like night and day and I can tell immediately when I have eaten some Gluten... for me, I don't vomit like others on here, but mine goes the other direction (sorry to be slightly graphic)...

so what do you all think I should do???

Should I wait or just go ahead and put him on the gluten-free diet???

Thanks for any advice you can give!

--Maya

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

You need to wait until after testing to put him on the diet. Being gluten free before testing will make the tests worthless.

Make sure the complete panel is done on him though.

As soon as the blood is drawn you could have him go on the diet and see if he sees improvement as well.

Guest taweavmo3
Guest taweavmo3
Posted

How long are you going to have to wait? It would be the ideal situation to wait until you can get the blood tests. With that being said, I am having the same dilemma myself. I already have one confirmed 3yo celiac, and a 17 month old who is showing strong symptoms. The ped seems to think that many stools a day are normal, and as long as he is growing some....no need to test. I strongly disagree with this, b/c height seems to be the hardest thing to gain back. I don't want to wait to test until his growth stops, and I flat out refuse to.

Also, my 3yo has what I consider severe developmental delays, as well as some autistic tendencies. We are in the process of getting her evaluated and starting that whole process. My 17 month old talks less now than he did at 15 months. I am scared to death that he will be as delayed as my daughter, and I have no doubt that gluten is to blame. SO, my point being, I am having to really examine WHY I want the actual diagnosis. Is it to just satisfy the doctors, that in fact my concerns are valid, and that I'm not some over-protective granola mom? I know deep down what the problem is.........so I'm asking the ped at Ben's next appt to test for Celiac. He is still young, so the probability that it comes back - is pretty high. BUT, I will put him on the diet no matter what the results. I refuse to feed him the equivalent of poison, just to get that dx. I was iffy at one point, thinking it was a little rough to put him on the diet w/out a diagnosis. But, seeing how long it is taking my 3 year old to "catch up" (if that will every actually happen) has totally opened my eyes.

It is not as if I'm debating a controversial med w/ strong side effects or something......it's a diet change, a simple removal of gluten. I consider it the equivalent of deciding to be a vegetarian or requiring kosher foods. It's a lifestyle, and no on should question why you chose that lifestyle or belief.

I hope that helps....sorry, I'm a little bit venty tonight after a very rough day with the kids, and car trouble that prevented me from going to a follow up GI appt for Emmie that we waited 3 months for. I had to reschedule for.....November! UGHHHHH. I am just so fed up with doctors right now, so your question came at a perfect time! Good luck.

tarnalberry Community Regular
tarnalberry
Posted

If you ever plan on getting him tested, I agree that you should wait until he's tested to go on the gluten-free diet. If it's been a while since you've been called back, call them again! No need to wait too passively! :-) (Though, once you hear the receptionist *sigh* when you call, you may have called too much. ... At least that's what my personal experience has shown. :-D)

Kasey'sMom Enthusiast
Kasey'sMom
Posted

Do you have a family Dr. or does you son have a pediatrician? You might try to go another rounte if you can't talk with his endocrinologist. We went through several specialist and practioners before we got my dd's allergist to test her. Kindof funny when our pediatrician called and asked me, "who ordered the tests." We have to travel out of town to see the allergist and I think the ped. was shocked at the results. However, now he is really supportive and we're thankful to have hime on on our side.

Hope you get some answers really soon. :)

Mjohnson73 Apprentice
Mjohnson73
Posted
  • Author

Hey all,

Well I just got off the phone with my son's endocrinologist...the squeaky wheel finally got the grease :) and she said that even tho my blood test results for celiac were negative she wants him tested... DUH! So I am calling his Dr. in the morning and getting him tested for Celiac in the morning...I hope I can get him in to the lab in the morning to get tested....

Once those results come in (probably about a week or so)... then she will look at the results of that and the ones of his x-ray (bone age scan) (which apparently she still hasn't looked at....even tho she has had them since Aug. 15th)....

then we can decide what to do.... even if they come back negative, I am still going to put him on gluten-free diet (at least for a while and see what happens)....

--Maya

Carriefaith Enthusiast
Carriefaith
Posted

Good luck with the testing. It was a good idea to wait and put him on the diet after the testing. Ask if they can do the Tissue Transglutamase blood test tTg, since it is highy specific for celiac disease.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Merika Contributor
Merika
Posted

If he's being tested in the morning, just put him on a gluten-free diet immediately after the test. No need to wait for the results. :) The doc may have a fit later if they want to biopsy, but 1- you don't really need the biopsy and 2-if they're fast enough with it, being gluten-free for a week or two won't make a difference for the biopsy.

Merika

  • 2 weeks later...
Indea88 Newbie
Indea88
Posted

Holding to a strict gluten-free diet for my 2 year old is a no brainer. Now that I know he has Celiac it explains so many things, the behavior, the autistic traits. They are gone now that he is Gluten free.. Hes positive for the gene testing but Celiac Panel was inconclusive( he was only on gluten for three days prior to the test. The Pediatric GI Dr. told me he would have to be on gluten x 4 months and then retested. NO WAY.. Maybe when hes in school all day :D !!! There is no way I would put him back on Gluten, for what so he can regress?If the gluten-free diet shows improvement I would just do it.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @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...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      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...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.