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

3 Month Follow Up Labs


Mom-of-Two

Recommended Posts

Mom-of-Two Contributor

So I had my 3 month follow up. Here are my labs:

Before:

Gliadin IgA - 150

Gliadin IgG - 24

Transglutaminase IgA - 84

Now:

Gliadin IgA - 26

Gliadin IgG- 6

Transglutaminase IgA- 47

You can see the numbers have dropped, she thought it was great progress BUT didn't seem to think they should still be elevated - I actually thought the results were awesome for only 3 months, what do you all think of the results?

She suggested that my levels are still elevated because my kids are still eating gluten- and if we make the house gluten free, my levels should be normal at the next checkup. Hubby went gluten free when I did, my oldest is about to make the change because she is celiac based on her labs- the scope she had done a few weeks back was normal- I have an appt with another pediatric GI in 2 weeks, at which time he will do a more complete panel to check her EMA.

My 4yo tested normal.

Thoughts on my progress?? Thanks!


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



Celiac.com Sponsor (A8-M):



BabsV Enthusiast

Congrats! Your numbers are dropping which is the direction you want to go!

I can tell you what the doctor told me when I was diagnosed...she said to give the diet at least 3 months for ANY improvement in symptoms and 6-12 months to see real improvement. I had a blood test at 6 months gluten-free and my numbers had dropped quite a bit but weren't in the negative/normal range yet (but close, really close.) My doctor (different from the one who diagnosed me) told me to just keep doing what I was doing since my numbers had dropped and to test again at 1 year gluten-free. At that point he said he'd really hope I was in the negative/normal range and if I wasn't we'd need to look closely at everything I am ingesting and see if I'm getting hidden or trace gluten somewhere.

So from what my doctors have told me, 3 months really isn't a long time in terms of healing. Give it more time and don't stress about it.

Just be very cautious in a shared kitchen. I have a shared kitchen but don't allow any baking ingredients (i.e. wheat flour, pancake mix) in it. I do allow prepackaged items with gluten like bread, pretzels, etc. Those are in their own dedicated cabinet and I don't touch them. I am manic about wiping down counters and cabinet handles, etc. with a soapy rag which gets tossed in the wash after every use (I have a whole stack of them!) Dishes don't go in the dishwasher with any sort of food residue on them, I've got my own shelf (the top one) in the fridge, we use different containers for leftovers although I'm starting to be a real convert to using ziploc bags if at all possible, there are no more wooden spoons or cutting boards to be found in my kitchen, I replaced scratched pans - in fact I have pans for gluteney items (a couple of the old ones) and bought myself new pans which I was planning on doing anyway my diagnosis just speeded up that decision, I have a separate toaster for gluten-free bread, etc.

Also, have you checked all medicines you may take to make sure they are gluten-free? What about your lipstick/balm? Gluten is everywhere, sneaky little protein that it is!

Stay with what you are doing as from the results you posted it looks to me like you're doing the right thing!

MitziG Enthusiast

Your numbers were pretty high to begin with, I don't think it is realistic to expect them to be at zero in 3 months.

Of course, cross contamination may be an issue, as she suggested. And honestly, I am all for making the house gluten free. The 4 year old is likely to develop celiac at some point, and being gluten "lite" now may forestall it.

Both kids and myself are celiac, hubs is by default because my dd kept reacting when we kept gluten in the house for him.

Mom-of-Two Contributor

Thanks, that is what I thought, coming from those high numbers, at 3 months I feel I must be doing something right! As for the shared kitchen, we replaced our cutting boards, utensils, and have a "gluten pasta pan" that is used only for their pasta, including a separate strainer and utensil, and a dish scrubber for gluten only. My oldest was taking bread to school on sandwiches but now that school is out and we found out she is going gluten free, my youngest doesn't really eat bread so that will ne a non issue. He does love waffles and the toaster is for that purpose only, once the transition is done for my oldest I will get a toaster for gluten free bread or waffles (hubby and I don't eat that)

I moved over to gluten free pretzels because the kids love them anyway. My youngest eats a lot of dry cereal, cheerios, etc as snacks, but other than that, I cleaned out ALL baking stuff, flours, etc there is no gluten in the cabinets. I have gluten cereal and pasta on one bottom shelf in the pantry.

I am ok with keeping a gluten free house, I was just wondering if this is all normal progress, and my numbers will come down more in the next 3 months anyway, regardless of my shared kitchen.

I am careful with medications, supplements, lotions, soaps, etc and made sure all of those products are gluten free, just got new soap and shampoo for the kids baths to include gluten free, their lotions, our sunblock, and such.

The only other thing is eating at Chipotle once a week, where they know me and my dietary needs, wash hands, change gloves, and prepare my bowl one person, they also get a new cheese bin from the fridge which has not been used. While I know there is always a risk, they are very accomodating, I feel safe eating there and have never had any problems. The only other restaurant I have eaten at in the last 4 months is Outback once, and they were amazing. I really stick to eating my own food, for the time being until I make sure I have the hang of it all :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Gluten is bad's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten Free ADHD medications

    2. - Wheatwacked replied to ABP's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results

    3. - gregoryC replied to gregoryC's topic in Traveling with Celiac Disease
      7

      Celebrity Cruise for Gluten Free

    4. - trents replied to ABP's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results

    5. - ABP posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,882
    • Most Online (within 30 mins)
      7,748

    tina.walstad
    Newest Member
    tina.walstad
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      I take Clonidine for blood pressure control.  It is the only one that did not debiltate me.  It also helps with my ADD.  Doctors always turned me down when I requested Ritalin (I am an adult) so it turned out for the best that I reacted badly to all the different BP meds they tried. Originally Clonidine was developed for ADHD adolescents that could not tolerate Ritalin.  
    • Wheatwacked
      You should also have her checked for vitamin deficiencies.   "Iodine's presence in the diet can contribute positively to hair strength and elasticity by maintaining hair follicle cycling and supporting the synthesis of hair shaft components like keratin. Keratin is strong and won't dissolve in diluted acids, alkalines, solvents, or water" "Keratosis pilaris is a benign skin condition characterized by small bumps around hair follicles. It is caused by excess keratin, a protein that forms hair, nails, and skin. Iodine is not directly related to keratosis pilaris, but certain foods can help improve it" It could be deficiency in iodine may be causing the keratosis Polaris.  Insufficient iodine intake affects healing, intellegence skin and nails. The average intake of iodine fell 50% from 1970 to now.  A Medium Urinary Iodine Concentration test will indicate intake.  TSH and T4 will not show iodine intake deficiency until damage is being done. Most newly diagnosed Celiac Disease and other autoimmune diseases are deficient in vitamin D when diagnosed.  Other than bone growth, vitamin D is essential for mental health and the immune system.
    • gregoryC
      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
×
×
  • Create New...