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

Has Your Doctor Taken Enterolab Results Seriously?

JennyC

By JennyC
in Doctors

Recommended Posts

JennyC Enthusiast
JennyC
Posted

I'm in the process of getting a second opinion for my 3 yr old son. He had positive blood work (tTG), and an outstanding dietary response to the gluten-free diet. The 1st pediatric gastro. wouldn't diagnose him with celiac unless he does a biopsy and it comes back positive. I can't put him back on gluten :( . I'm just not willing to loose the progress he's made thus far. He's gaining 3 lbs in one month! I came across Enterolab postings here and have contacted them. According to them he can remain gluten-free and still get good results from Enterolab. I know that many have given up on doctors, and enterolab functions to confirm or reject diagnosis in those cases. I would like to have an official diagnosis for my son so that he can have appropriate care. I'm wondering if I take Enterolab results to a future gastro appointment, if I'm likely to get anywhere?

I'm a little sketchy about Enterolab because he has yet to publish his work, and the testing is VERY cheap compared to other facilities. The whole celiac panel and gene test is around $370. That's how much I owe on his blood work!

As always, all input is really appreciated. I want want to do the best I can for my son.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

You already have a positive ttg and dietary response so you know he's gluten intolerant, you just don't know if he has celiac. Enterolab cannot tell you if he has celiac as they test only for gluten intolerance.

You can find out from Enterolab if he has the celiac gene. Keep in mind, Dr. Fine says that vitually everyone has gluten intolerant genes, so the benefit of the test is to find out if he has a celiac gene. That still won't give you a diagnosis, however.

GI's do not take the Enterolab results as diagnosis for celiac. Some will accept them for a gluten intolerance diagnosis, some won't. It doesn't really matter ... if your son is doing better gluten-free, then just keep him that way. :)

So, in my opinion, in your case, I don't think the test is worth it.

UNCHeel Rookie
UNCHeel
Posted
I'm in the process of getting a second opinion for my 3 yr old son. He had positive blood work (tTG), and an outstanding dietary response to the gluten-free diet. The 1st pediatric gastro. wouldn't diagnose him with celiac unless he does a biopsy and it comes back positive. I can't put him back on gluten :( . I'm just not willing to loose the progress he's made thus far. He's gaining 3 lbs in one month! I came across Enterolab postings here and have contacted them. According to them he can remain gluten-free and still get good results from Enterolab. I know that many have given up on doctors, and enterolab functions to confirm or reject diagnosis in those cases. I would like to have an official diagnosis for my son so that he can have appropriate care. I'm wondering if I take Enterolab results to a future gastro appointment, if I'm likely to get anywhere?

I'm a little sketchy about Enterolab because he has yet to publish his work, and the testing is VERY cheap compared to other facilities. The whole celiac panel and gene test is around $370. That's how much I owe on his blood work!

As always, all input is really appreciated. I want want to do the best I can for my son.

UNCHeel Rookie
UNCHeel
Posted

Sorry...that didn't go through. A firm diagnosis may be necessary however for insurance purposes...just a thought.

mommida Enthusiast
mommida
Posted

Some people are saying that a Celiac diagnoses has caused them to pay a higher health insurance and life insurance premium. :ph34r:

I have no problem keeping my kids gluten free with a probable celiac disease diagnoses.

School doesn't have a problem with letting them stay gluten free either. (Anything that will keep a child from vomiting or having uncontrolled "D" at school is a good thing.)

L.

Nantzie Collaborator
Nantzie
Posted

I've noticed quite a few people here have gotten an official diagnosis based on positive blood work alone. I think it has to do with how much the doctor knows about celiac.

My kids' pediatrician took the Enterolab results seriously. He gave me a referral to the ped GI just based on that. But then again, the best celiac ped GI in the whole area works in the same office, so he's just more knowledgable about the intracacies of celiac that the average pediatrician, I'm sure.

In a way, we're lucky that there are no prescriptions necessary for this condition. Because it's controlled by food, no matter if you have a diagnosis or not, you are able to treat it no matter what your doctor may believe about it. If the only way to control this was a prescription, a lot of us with negative or borderline test results would still be suffering.

I'm glad to hear your son is feeling better on the gluten-free diet.

Nancy

dlp252 Apprentice
dlp252
Posted

My GI does not agree with the stool testing, but also did not discount my dietary response to the diet. He performed an endoscopy (about 6 months after I went gluten free) and took biopsies, but as we both expected, they came back with no damage. Based on that, however, he said he could not officially diagnose me with Celiac. Still, he said dietary response is a valid indication of a gluten intolerance.

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

Celiac.com Sponsor (A8-M):


Clark Bent as Stupor-Man Contributor
Clark Bent as Stupor-Man
Posted

I agree with carla... I don't think the test will be beneficial for you... many of us who choose to test with Enterolab were either gluten-free prior to blood work or never had positive blood work... that in itself will probably hold as much weight, if not more, than any Enterolab testing for most GI doctors... I think if you pursued some different GI doctors, the positive blood work and dietary response could probably get you an official diagnosis of celiac disease for your son... the gene test is really the only part of Enterolab's testing I see having any real value for your situation..

Ursa Major Collaborator
Ursa Major
Posted
I would like to have an official diagnosis for my son so that he can have appropriate care.

You don't need to have any diagnosis, official or not, to give your son appropriate care. You know that he is obviously gluten intolerant. An official diagnosis with a positive biopsy would just tell you that things have progressed to the point of completely destroyed villi.

Whether his villi are gone or not, the ONLY appropriate care is the gluten-free diet. You are already giving him that. NO GI will give him better care than that.

Keep up the good work, and don't worry about what doctors say. You don't need a doctor to give your son what he needs, which is keeping the food that makes him sick away from him, and feeding him the food that keeps him healthy.

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
      133,329
    • 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
      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.