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

21mnth Old With Some Symptoms?


kimber

Recommended Posts

kimber Enthusiast

Hi

I'll try and make this as short as possible

My ds was diagnosed with reflux and started meds at 2 weeks old..he was transitioned from b/m to a hypo formula at 6 mnth and since then has been VERY irritable at all times with a very bad temper

He sleeps a lot but never ever seems well rested..he looks pale with dark circles

I always blamed his symptoms on reflux or food allergies but am starting to wonder if we could be missing something

He seems sensitive to dairy/soy and when he was younger tested - for the skin allergy test/wheat etc

He does seem very crabby after he east bagels, pasta, pizza dough etc..I've tried limiting but not excluding these fodds

His weight was an issue at one time but now he is small (short!) but is gaining steady and is in about the 20th percentile (up from the 8th percentile)

He actually has problems with very watery b/m or constipation but I don't know if that has anything to so with his reflux or allergy meds

We've changed/increased his allergy meds and reflux meds but nothing seems to help

We saw a GI a few mnths ago (before I was familiar with celiac) he did send my ds for b/w and all came back fine

Not sure were to go from here..he is VERY picky with his eating and loves to drink his bottles

I might just try a wheat free diet to see how he does but was looking for any feedback...

He just doesn't look healthy or like he feels well 99% of the time

Thanks so much for reading, Kim


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

He's young enough that the testing for celiac disease might be a false negative. If you want to try the diet despite the neg test, remember you have to be 100% gluten free in order to see positive results. There's no cheating and seeing improvement. My son's personality did a 180 four days into the gluten-free diet. Testing in the future will be difficult if you keep him on a gluten free diet because gluten must be in the body for accurate testing. At this point there is no good testing for young kids. I would guess that there will be better testing in the future, though. Personally, I'd make him gluten free and see what happens. A gluten free diet isn't that radical when you think about it and causes no harm that I'm aware of. The only difficulty is being 100% gluten free. But even that gets easier with time.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

KaitiUSA Enthusiast

I would try him on the gluten free diet...not just wheat free.

With kids under 2 testing can be inaccurate. If under 2, I would just try the diet out(100% gluten free) for a while and see how he reacts to it.

However, if you plan on testing him when he reaches that age he needs to stay on gluten because being gluten free will alter test results.

Guest nini

my daughter was dx with reflux as a baby and had major personality/behavioral issues whenever she ate any gluten containing foods. After I was dx with Celiac when she was 3, we found that she did better when she ate what I was eating (it was just easier that way) and when she was at day care or in the evenings after picking her up, she was cranky, irritable, sometimes downright violent... She looked like a starving Ethiopian with her stick arms and legs and bloated tummy... She had explosive diarrhea and projectile vomiting, chronic ear infections, seasonal allergies, yada yada... We had her tested and the b/w came back negative, but I'm convinced they didn't even do the right tests, and even if they had I doubt it would have been accurate because in young children the tests are looking for EXTENSIVE damage, and there just isn't that much damage in most cases yet.

After the test results were negative, with the support of her pediatrician, we decided to try the gluten-free diet and see how she did... 180 degree improvement. Like a totally different child. She has been gluten-free for over 2 years now and she is the healthiest child around!

So my suggestion would be, since you've already done the b/w, get the pediatrician's support on trying the diet, give it a really good try, at least a few months before you decide it's not working. I think you'll be pleasantly surprised. Keep a food diary too, as he may have other food sensitivities as well.

In my opinion, positive dietary response is the most telling indicator as to whether or not your child needs to be gluten free. It's a healthy diet, there are plenty of gluten-free kid friendly foods, and I will gladly help you with any suggestions or support you need!

kimber Enthusiast

Thank you all so much for your response

I am just so sick of stuffing him with more meds..reflux meds, allergy meds and not seeing any improvement

Nisla

When you have the time I would love some snack ideas/meals etc

He is very picky and eats mostly d&s free

oatmeal, cheerios, fruits, chicken, meats and cookies (I can't remember the name but I have boguht hims some maple gluten-free cookies from WF he loves!)

He also likes earth's best cookies

Thanks again for the support!

Kim

Archived

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

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.