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

New To This- Finally Taking The Steps! Entero Lab?

jitters

Recommended Posts

jitters Apprentice
jitters
Posted

Although no one in my family has an official diagnosis of Celiac Disease, my mother has been eating gluten free for 10 years now. I believe I am gluten sensitive as well and have been off and on gluten for about 4 years now, its a battle I was losing until recently as I can tell I am just not well when I eat gluten. My question is about my daughter though. She is 3 years old and I have always thought she may have an issue with gluten. I have tried a few times to put her on a gluten free diet but both her and her father are picky eaters. And I don't just mean slightly picky- VERY picky. This is something we are trying to overcome but pizza, mac and cheese, bread, etc are staples in their diets. Meat is something they don't eat very often because of a texture problem. We are making some progress on the pickyness. Fast forward to now:

My daughter has a Jekyl and Hyde personality. She can be very difficult and she is VERY smart. She will not play with toys and seems to have the "blahs" a lot unless someone is entertaining her. She is my clone when I am on gluten. I've noticed when she eats pizza she has a hard time sleeping, and I've also noticed that sometimes she is always tired. She also gets rashes and circles under her eyes as well as having some issues with constipation. I know in my heart she has gluten issues.

So... I am finally having her tested. I've decided to skip the doctors office (they think I'm nuts since she is physically healthy with no major concerns at this point) and go straight through Entero Lab. I'm doing this also because I've heard stool samples are more reliable than blood tests and I'm afraid a blood test would come back negative and everyone would give me the whole "I told you so" look. Of course, I would be ecstatic if her tests come back negative. I would love to not have to worry about my daughter and food.

My concern/question is this: has anyone here tested their preschoolers with this company? Any stories you can tell me? I think my in laws believe I am crazy as I tell them I have issues with gluten but sometimes eat it (my fault I know...) so this is why I am finally having some tests done. I feel this way I'll at least have some "proof" to show them and maybe some support and help from them. I plan on taking the results to her doctors once I have them. Does anyone here have any stories about this company and their tests? Do you feel they are reliable, or is it a gamble like blood tests can be?

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Welcome!

I have mixed feelings about Enterolab. Dr. Fine hasn't published his research yet, so most doctors will not accept it for a diagnosis. There are mixed feelings around here. Some people love it, others question its accuracy.

Dietary response in my opinion is the best indication of whether you are gluten sensitive. However, if she's still eating gluten, personally, I'd have the blood test done. I'd try out the diet no matter what the result of the blood test.

The reason I'm writing in is to tell you there is gluten-free pizza. My daughter and I like Amy's, but we doctor it up a bit with more cheese and sometimes other pizza toppings.

There is also gluten-free frozen mac and cheese. I've also made homemade mac and cheese with Tinkyada Pasta. She won't be able to tell the difference.

vampella Contributor
vampella
Posted
Welcome!

I have mixed feelings about Enterolab. Dr. Fine hasn't published his research yet, so most doctors will not accept it for a diagnosis. There are mixed feelings around here. Some people love it, others question its accuracy.

Dietary response in my opinion is the best indication of whether you are gluten sensitive. However, if she's still eating gluten, personally, I'd have the blood test done. I'd try out the diet no matter what the result of the blood test.

The reason I'm writing in is to tell you there is gluten-free pizza. My daughter and I like Amy's, but we doctor it up a bit with more cheese and sometimes other pizza toppings.

There is also gluten-free frozen mac and cheese. I've also made homemade mac and cheese with Tinkyada Pasta. She won't be able to tell the difference.

I agree fully with Carla. I'm on the mixed feeling fence. I did put out money for the gene test, even though my daughters ped say's they don't know all the genes that cause celiacs and such, I did it for me but then, I still had questions. MY daughter 4 yrs doesn't have an "official" dx BUT we do KNOW 100% she has celiac disease. She was ill and hasn't been ill a day since going gluten-free *unless I accidently gluten her* which has happened a few times.

My daughters both like Amy's pizza jazzed up, home made mac & cheese with tinkyada pasta, homemade chicken fingers and fries. we also make pizza with kinnikinnick pre made pizza crusts, we make tortillas with food for life brown rice tortillas.

Juliet Newbie
Juliet
Posted

We got an official diagnosis with our doctor for our son and not Enterolab, but that doesn't mean I wouldn't have used it. I honestly didn't know about it then, but it seems that a lot of people trust the place.

As for gluten free food, I know of two gluten-free mac & cheese mixes (Annie's, which is traditional orange color, and DeBoles White Cheddar & Shells - which my son prefers, especially when I add a little extra parmesan & cheddar cheese), Ian's frozen gluten free chicken nuggets & gluten free fish sticks, Whole Foods has good frozen pizza crusts, and I like the Gluten Free Pantry French Bread & Pizza Crust mix as well as Chebe mix. Tinkyada pasta is great, and Ore-Ida Tater Tots and also Tater Puffs from Whole Foods are both gluten free (I prefer Whole Foods). There are a lot more options out there even from just a year ago, especially with the new labelling laws.

And as for the gene test, the statistic is something like 99% of the people who have Celiac Disease have one of two different genes: HLA-DQ2 and HLA-DQ8. There is a very small amount of people who have the disease and neither of these genes. And even if you have the genes (which something like 30-40% of the population does), obviously most will still not get the disease (right now, only about 1% of the population has the disease, however a very large majority of those people are undiagnosed). They are now doing studies on families that have multiple diagnoses (sp?) to see if there are other correlations in addition to the genes that cause the disease to be triggered.

jitters Apprentice
jitters
Posted
  • Author

Thanks everyone for your answers. I think the most frustrating thing about all this is that there is no test that can say 100% whether you have Celiac or not. It drives me nuts! Especially when you have doubting family and friends and the blood test or even biopsy comes back negative. The test I'm getting from Entero Lab isn't the gene test, but the other one that tests for gluten intolerance (supposedly). My plan is to get the results and then discuss it with her doctor. Either way I'll do the diet test simply because I eat that way. The big obstacle will be my husband- there is no way he'll eat gluten free!

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. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    2. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    3. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
    4. Scott Adams
      - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune con...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,090
    • Most Online (within 30 mins)
      7,748
    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Celiac Screening

      By Scott Adams · Posted

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      New issue

      By Scott Adams · Posted

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
×
×
  • 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.