Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Is My Daughter "gluten Intolerant" Enough To Require Diet?


SoMuchPaint

Recommended Posts

SoMuchPaint Newbie

Recently my kindergarten daughter and I were tested with Enterolab. I am unsure if she needs to be on a STRICT gluten-free diet, or if the occasional cupcake at school or slice of delivery pizza at a party are not really worth the fuss. I think I know the answer already, but am meeting with confusion among the other adults in our family as to how "controlling" I will need to be of her diet, and how much of it can be left to her own paying attention to how she feels, especially as she does not have the most common Celiac genes.

Here are her results:

Fecal Anti-gliadin IgA: 69 Units

Fecal Anti-tissue Transglutaminase IgA: 24 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 6 Units

HLA-DQB1 Molecular analysis, Allele 1: 0303

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

Thank you so much for any insight you can give!


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



Celiac.com Sponsor (A8-M):



SoMuchPaint Newbie

Did I post my question in the wrong place?

sunnybabi1986 Contributor

Hi!

If your daughter's testing showed 10 units or more of Fecal Anti-gliadin IgA or Fecal Anti-tissue Transglutaminase IgA, then your daughter is having a reaction to gluten and does need to be on a strict gluten free diet. Even occasional or small amounts of gluten will create a reaction in her body. If she came back with 69 and 24 units, she is definitely gluten sensitive. No question about it. She needs to be gluten free. 100% gluten free. If she has an occasional cupcake or piece of pizza, her body will have to begin the healing process all over again.

My scores were exactly 10 units and I decided to go gluten free, even though 10 units is on the low end scale of gluten sensitivity. I have been gluten free for 5 weeks now and have seen dramatic results in my digestion and overall health. I'm not 100% better yet, that can take months to achieve based on how much damage is in the intestines.

By the way, there are several yummy gluten free cake mixes out there, and you can make her some cupcakes out of them when there is a party at school. Betty Crocker has come out with a good gluten free yellow and devil's food cake mix.

Hope this helps! Good luck!

Janie

SoMuchPaint Newbie
Hi!

If your daughter's testing showed 10 units or more of Fecal Anti-gliadin IgA or Fecal Anti-tissue Transglutaminase IgA, then your daughter is having a reaction to gluten and does need to be on a strict gluten free diet. Even occasional or small amounts of gluten will create a reaction in her body. If she came back with 69 and 24 units, she is definitely gluten sensitive. No question about it. She needs to be gluten free. 100% gluten free. If she has an occasional cupcake or piece of pizza, her body will have to begin the healing process all over again.

My scores were exactly 10 units and I decided to go gluten free, even though 10 units is on the low end scale of gluten sensitivity. I have been gluten free for 5 weeks now and have seen dramatic results in my digestion and overall health. I'm not 100% better yet, that can take months to achieve based on how much damage is in the intestines.

By the way, there are several yummy gluten free cake mixes out there, and you can make her some cupcakes out of them when there is a party at school. Betty Crocker has come out with a good gluten free yellow and devil's food cake mix.

Hope this helps! Good luck!

Janie

Thank you so much. I wasn't sure just HOW bad the 69 and 24 units are (beyond being a positive test result), but I was thinking that ANY level of autoimmune activity was bad enough to be taken seriously.

Does producing antibodies to gluten mean you technically have an allergy to gluten?

mushroom Proficient
Does producing antibodies to gluten mean you technically have an allergy to gluten?

No, this is an autoimmune response. There is a difference between that and an allergy (an IgE response).

sunnybabi1986 Contributor
Thank you so much. I wasn't sure just HOW bad the 69 and 24 units are (beyond being a positive test result), but I was thinking that ANY level of autoimmune activity was bad enough to be taken seriously.

Does producing antibodies to gluten mean you technically have an allergy to gluten?

I'm not an expert yet on this, but mushroom explained it's an autoimmune response, which in my understanding, is more complex than an allergy. I still have to figure all this out myself, but that's my understanding.

According to Enterolab's site, the number of units of IgA you have really doesn't tell you anything about the severity of what's going on inside your intestines. Some people with lower numbers are sicker than those with higher numbers. Another user on these forums told me that she came back with low units of IgA from Enterolab, but had confirmed intestinal damage with an endoscopy.

Does your daughter have any symptoms? If she does, it would be a good way to explain to relatives that the only way that she will get and stay better is to steer clear of gluten strictly. She doesn't have Celiac, as she doesn't carry the genes, but a gluten sensitivity can make you pretty sick and unhealthy if not treated. Let us know how things go!

Janie

SoMuchPaint Newbie
Does your daughter have any symptoms? If she does, it would be a good way to explain to relatives that the only way that she will get and stay better is to steer clear of gluten strictly. She doesn't have Celiac, as she doesn't carry the genes, but a gluten sensitivity can make you pretty sick and unhealthy if not treated. Let us know how things go!

Janie

My daughter isn't much of a complainer, but if you ask her how she is feeling, she will often mention that her stomach hurts, as do the joints in her hands and her knees. The joints in her middle fingers actually lock up -- if she closes her hand slowly, the middle finger seems stuck straight and then jumps into a bent position with a quiet click sound. She has had dark bags under her eyes for more than two years.

We looked back at family photos, and the darkness first shows in family photos taken a few months after my grandmother's death. She was really close to my grandmother, who was legally blind and lived with us, and her death, from a fall down the stairs while on vacation with us, was sudden and traumatic. I wonder if that event was a trigger. I seem to remember her being a very healthy baby and toddler, but she had cyclic fevers in preschool (never diagnosed; she started preschool a month after my grandmother's death), and seems to catch everything in Kindergarten this year.

I have Hashimoto's thyroiditis (diagnosed when she was 12 months old, probably related to pregnancy) and what was probably rheumatoid arthritis (which started from a badly placed IV line when in labor with my second child), which I treated by eliminating corn and corn products from my diet and undergoing acupressure treatments for about a year. It was really bad, to the point that I was dropping anything I tried to pick up with my right hand, was starting to have trouble using my left hand as well, and was developing stiffness and pain in my left knee. Now my knees are perfectly fine, my hands are mostly pain free, and I get noticeable stiffness and pain in my hands after consuming corn products, like frosting, which is made of powdered sugar (has corn starch). This was before I recently went gluten free myself.

I sincerely hope that a gluten-free diet (which she seems to be readily accepting, perhaps because we are doing it together) will make her asymptomatic, but the stiffness in her hands is making me look suspiciously at corn for her as well. I'd hate to further limit her diet, though, without some sort of proof.

Enterolab doesn't seem to test for corn sensitivity. Does anyone?


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748

    kyle68j
    Newest Member
    kyle68j
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...