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

Son's Blood Tests Tomorrow. What To Do?

pricklypear1971

Recommended Posts

pricklypear1971 Community Regular
pricklypear1971
Posted

Ok, finally taking my son in tomorrow for blood tests. Have gone over the lab sheet and all of them are there, plus thyroid and vitamin.

So here's the thing.... What if its negative?

I'm suspicious of milk because he had milk protein intolerance when he was a baby (kept him off til he was 1). He has also has the buddha belly (skinny everywhere else but has a belly and will store fat on his belly). He's tall and big for his age (everyone thinks he's 2 years older than he is).

He has some behavior issues I'm suspicious of (since this is how many kids express gluten or food intolerances). If I take him off gluten then he's going to have to go back on for testing again in another year. That's a bit wild - gluten-free for 9 months and on it for 3....

Of course, if he's positive we'll do the endoscopy so its all nice and legal (but go gluten-free even if biopsy is negative).

Opinions, please?

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

Celiac.com Sponsor (A8-M):


saintmaybe Collaborator
saintmaybe
Posted

Ok, finally taking my son in tomorrow for blood tests. Have gone over the lab sheet and all of them are there, plus thyroid and vitamin.

So here's the thing.... What if its negative?

I'm suspicious of milk because he had milk protein intolerance when he was a baby (kept him off til he was 1). He has also has the buddha belly (skinny everywhere else but has a belly and will store fat on his belly). He's tall and big for his age (everyone thinks he's 2 years older than he is).

He has some behavior issues I'm suspicious of (since this is how many kids express gluten or food intolerances). If I take him off gluten then he's going to have to go back on for testing again in another year. That's a bit wild - gluten-free for 9 months and on it for 3....

Of course, if he's positive we'll do the endoscopy so its all nice and legal (but go gluten-free even if biopsy is negative).

Opinions, please?

It sounds like you've made up your mind already. You'll probably take him gluten free if his blood tests and/ or his endoscopy are positive, and you won't if his blood tests are negative. It sounds like you're hesitant to put him through a challenge. I...have no idea how a challenge would go on a non-celiac individual, since I was definitely celiac when I went gluten free, or severely gluten intolerant. Bad things happen when I ingest it. I've heard it said that going gluten free can induce gluten intolerance even in normal individuals though, of varying severity, so it's really what you're willing to risk putting him through in a challenge situation. :huh:

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

It sounds like you've made up your mind already. You'll probably take him gluten free if his blood tests and/ or his endoscopy are positive, and you won't if his blood tests are negative. It sounds like you're hesitant to put him through a challenge. I...have no idea how a challenge would go on a non-celiac individual, since I was definitely celiac when I went gluten free, or severely gluten intolerant. Bad things happen when I ingest it. I've heard it said that going gluten free can induce gluten intolerance even in normal individuals though, of varying severity, so it's really what you're willing to risk putting him through in a challenge situation. :huh:

We're actually trending to trialling him gluten-free and milk free regardless to see if he improves with some behavior issues... Just wondering if anyone else has tried it for those specific reasons.

We would keep challenging and testing if he tests negative (but responds) to attempt an official dx. Since he's 9 he will have need of an official dx in the future if he has an issue.

Roda Rising Star
Roda
Posted

My 10, almost 11 year old has had negative blood work every year for the past three. He even had an endoscopy with biopsy and it was negative. He has been on a gluten free diet now for a little over three months. I toyed with the idea off and on for the past two years, and couldn't commit him to it with negative tests. After his biopsy I bit the bullet and went for it. I have noticed a lot of improvements. Behavior isn't a problem with him now, it was up until he was 5(tempertantrums, hitting me etc.) and I have not noticed any change in his behavior overall. He is a sweet happy child who smiles all the time. Things I did notice were that he no longer battles with constipation and is regular as clock work. He is more pink in color, almost dainly stomach pain/gas/bloating and nausea are gone too. He has gained 6 lb. in three months and is just now starting to grow in height. He was becoming very sensitive about his height(one of the smallest in 5th grade) and probably is the size of an average 8 year old. His almost 7 year old brother, who is celiac, grew so much this past year since he has been gluten free, that he isn't that much smaller than him. We are hoping that the oldest boy will take a growth spurt like his brother. I do think the weight gain is not coincidence. I believe it is because of being gluten free. He typically doesn't gain that much weight in a whole year! We are going to do a challenge, but not to repeat any testing. It is for our own reference. He has had the blood tests at least 4 times and the scope. Our testing on him is done. I won't put him thru it again just to probably get the same answers.

TBelle Newbie
TBelle
Posted

How old is he? Tests under the age of 4 can be unreliable. If they keep coming back negative and you see improvements on a gluten-free diet I would take him off gluten as he may have a Gluten intollerance but not be a coeliac. After you have done all the testing you have done all you can do with it, so I would take it into your own hands and see how he goes

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
      133,330
    • 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
      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.