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

My Dilemma


moonunit

Recommended Posts

moonunit Apprentice

Okay, I'm pretty sure I know what you guys are going to say, but I will ask anyway. I have a dilemma.

I have tested positive through Enterolab, and my son has always been a bit fussy by nature (he's 15 months old) so I had him tested as well.

His test came back positive, but look at the numbers:

Fecal Antigliadin IGA 15 (normal <10)

Fecal Antitissue Transglutaminase 10 (normal <10)

Quantitative microscopic fecal fat 54 (normal <300)

So it looks like he's absorbing food okay, and although I know, I know, it's "like a pregnancy test, positive is positive," a 10? That's kind of like... I don't know, is that cutoff number solid as a rock, I wonder now, or a teeny bit arbitrary?

I guess now I'm trying to figure out is which is worse:

- Make his quality of live extremely difficult (one of his first words was "cracker" and he adores cheerios) when he seems to be doing okay absorption-wise and I haven't had him see a doctor yet to confirm or direct his care

OR

- Keep feeding him gluten when I can see that at least one number indicates that it might hurt him in the long run to do so

Right now I think we're in a wait-and-see place, figuring that if he is getting damage, it's minimal or will be later down the road. I would like him to be diagnosed by a doctor but the blood work only happens after age 2, right?

I guess I am mostly just looking for some opinions and some support that this is a tough spot to be in!

Thanks...

Oh, and P.S. -- Now I also wonder if I should have my daughter (age 2) tested. I would have to go through Enterolab because her pediatrician refuses to test her (MY doctors say that the + tests don't count, so since I "don't have anything wrong" my daughter has no family history to warrant testing.) This is getting expensive!


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

antigliadin numbers can be raised by things other than celiac. in fact, i think alot of people have anti-bodies to things that they don't have any problems with. it doesn't look to me like your son tests positive for celiac. a lot of kids are a bit fussy by nature. i am like you, and would prefer a diagnosis by a doctor. this is just my personal opinion-----but if it were me, i would not put my child on a gluten free diet based on such low numbers and "a bit fussy by nature" being his only symptom. i would probably keep it in mind, and watch for other symptoms, and have blood tests run as my child got older.

CarlaB Enthusiast

He is currently not having bad reactions, but it may be causing his discomfort, even if it hasn't caused damage yet. I'd at least try a gluten-free diet to see if it helps. If after a few months it's doing nothing for him, then reconsider.

Ursa Major Collaborator

I agree with Carla here. If he wouldn't have a reaction, it would be lower than 10. He is little, and doesn't have extensive damage yet, so his numbers are still low. Why wait with the gluten-free diet until he gets really sick?

Also, there are gluten-free versions of those foods he likes. He is too little to remember the old, gluteny versions for long.

And yes, I would definitely encourage having your daughter tested as well. Since celiac disease is genetic, that's a good thing to do. And since you have tested positive, there IS a family history to warrant testing!

Archived

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

  • 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. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      5

      Related issues

    3. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Going for upper endoscopy today

    4. - Russ H replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Guinness, can you drink it?

    5. - Scott Adams replied to Borky's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten food test strips


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,270
    • Most Online (within 30 mins)
      7,748

    Hope2024
    Newest Member
    Hope2024
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
    • Russ H
      There are several blogs where people test different beers using commercially available gluten testing kits. Guinness definitely tests positive for gluten. Something to be mindful of is that in some regions, foodstuffs containing less than 20 ppm gluten can be sold as 'gluten free'. However, due to the volume involved, a UK pint of beer at 19 ppm would contain more gluten than the generally accepted as safe daily limit of 10 mg. I have seen gluten-free beers testing at between "undetectable" and 5-10 ppm. I have also seen a report of a positive home test on Daura Damm, which is sold as gluten-free beer - the manufacturer did not respond to the tester's query.
    • Scott Adams
      Welcome to the forum! Do you mean this article, and if so, I don't think these are available yet.  
×
×
  • 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.