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

Follow-up Blood Work Results


heatherjane

Recommended Posts

heatherjane Contributor

I was diagnosed with celiac in January and have been gluten-free ever since. (My original numbers were all way over 100, but I don't know specifics.) Last week, I had my antibodies retested. My doctor himself called me this afternoon and left a lenghthy voicemail about my progress. My numbers are down 75%, and I am elated to hear this news because of my high numbers at time of diagnosis, and because I've had some lingering bowel issues that have made me wonder if I was getting better at all.

Because I have "only" improved 75%, my doctor also insinuated that I have not fully grasped the diet and needed to work at it a little harder. He also said, though, that it's a possibility that I could have lymphocytic colitis as well - which could account for the frequent (unproductive) BMs with their varying consistencies (but no diarrhea). If that's the case, then he's going to put me on some kind of medication. (He's calling me back on Monday so we can discuss all of this further.)

I honestly can't imagine where I'm getting any gluten. I rarely, RARELY eat out, and the few processed foods I eat are ones that have been confirmed gluten free. (I'm going to try to eliminate them altogether and see if that helps.) Beauty products, soap, shampoo, medications, vitamins...all gluten free. I live alone, so there's no risk of a contaminated kitchen. Kissing is definitely not an issue. It's possible, I suppose, that I could be getting it at work somehow through handsoap, or surfaces in the breakroom (which I enter only when necessary). I'm paranoid of any stray crumb when I can't identify the source.

I'm inclined to think that my improvement is just slower than normal. I'm scheduled for a repeat EGD/colonoscopy on Oct 7th, so we'll know how the villi are doing at that time. I was just wondering what you guys think about it, since I know a lot of people in this forum seem to have a wealth of knowledge. I would appreciate your thoughts. :)


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.

  • 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 commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

    2. - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Going for upper endoscopy today

    3. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

    4. - maryannlove commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

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

      Gluten free nuts


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,271
    • Most Online (within 30 mins)
      7,748

    NancyWM
    Newest Member
    NancyWM
    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

    • Scott Adams
      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • 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
×
×
  • 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.