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

Waiting For Results

mom2katry

Recommended Posts

mom2katry Newbie
mom2katry
Posted

Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

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

Celiac.com Sponsor (A8-M):


swalker Newbie
swalker
Posted

The samples they take for a biopsy are very small so sometimes they don't grab from a heavily damaged area.

She's gluten intolerant even if she's not celiac judging by the constipation and slow growth. Removing gluten will probably fix all of her issues but lots of us have had to remove dairy, corn and soy as well.

ang1e0251 Contributor
ang1e0251
Posted

I'm no expert or healthcare professional but I have read how difficult it is to get positive bloodwork in kids. I haven't heard anyone report a false positive. Anyone know of one?

LDJofDenver Apprentice
LDJofDenver
Posted
Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

LDJofDenver Apprentice
LDJofDenver
Posted
Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

I'm not a medical professional either but you usually hear about false negatives, not false positives. However, you DO hear about negative intestinal biopsies - they can be for a variety of reasons, including handling of the specimen, and the location where they actually took the tissue.

Perhaps, if the intestinal biopsy comes back negative, go for the genetic testing. These words from Celiac Center UCSD (Open Original Shared Link):

"Genetic screening, on the other hand, is not affected by age, testing methods or diet and can be an excellent tool. However, their main usefulness is to help exclude the diagnosis. That is, if the major genes associated with celiac disease are not present, one can exclude the diagnosis with close to 100% certainty." -- That could be valuable information.

And, by the way, if she is testing positive for celiac disease, consider testing for other family members, as it is genetic. It has come from one side of the family or the other.

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):

  • 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.