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

Can Cc Be Enough To Make Iga Levels High?


teresasupermom

Recommended Posts

teresasupermom Rookie

I just got my dd's latest celiac panel. She's been diagnosed and gluten free for almost a year. Her first check at the 3 month mark levels were going down and doctor was pleased. The last two checks levels have been going up. I just got the results today and they said IGA was 53 and "highly positive". We have just this week switched the family over to entirely gluten free. We have had most of our meals completely gluten-free for some time. We only had to switch the gluten-free bread and cereal. Everything else was switched - pastas and other recipes. Now my sister and I were talking and she asked me if CC was enough to make her numbers this high or if it's possible I am missing something. I really think we are cooking everything gluten-free, but figured I'd pose this question here. Do you think CC is enough to be causing these high of levels or do you think I am missing something? Obviously there is the possibility I may be missing something, but mostly wondering if CC can cause this high of an elevation alone.


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



Celiac.com Sponsor (A8-M):



shopgirl Contributor

Are you cooking with new pots and pans? Wooden and plastic spoons? Cookie sheets and other bakeware?

How much processed food is she eating? Is any of it made on shared lines or facilities?

How about personal products? Shampoo? Conditioner? Soap? Lotion? Lip balm? Makeup (depending on her age)?

Is she in school yet? School is pretty much a crumb factory. How about when she's with her friends? Could she be sneaking something somewhere?

teresasupermom Rookie

Are you cooking with new pots and pans? Wooden and plastic spoons? Cookie sheets and other bakeware?

How much processed food is she eating? Is any of it made on shared lines or facilities?

How about personal products? Shampoo? Conditioner? Soap? Lotion? Lip balm? Makeup (depending on her age)?

Is she in school yet? School is pretty much a crumb factory. How about when she's with her friends? Could she be sneaking something somewhere?

No, we just switched the whole family gluten-free this week. We didn't buy new pots and pans or dishes. Everything we cooked has been gluten-free since this summer, but we hadn't gotten rid of the sliced bread or cereal (from my non0-celiac kids)until this week. My question wasn't so much is CC the problem. I am sure that it is, but more so could CC alone cause this high or do you think I am missing something in her diet as well.

Jestgar Rising Star

Obviously there is the possibility I may be missing something, but mostly wondering if CC can cause this high of an elevation alone.

Absolutely. The immune system is designed to protect you so it "assumes" that a tiny bit of gluten is actually a huge attack and it just hasn't seen the rest yet.

heatherjane Contributor

No, we just switched the whole family gluten-free this week. We didn't buy new pots and pans or dishes. Everything we cooked has been gluten-free since this summer, but we hadn't gotten rid of the sliced bread or cereal (from my non0-celiac kids)until this week. My question wasn't so much is CC the problem. I am sure that it is, but more so could CC alone cause this high or do you think I am missing something in her diet as well.

I'm not sure about CC bumping numbers up that high - it seems to me that she would have to be getting significant amounts of gluten for them to keep climbing upward. I would think that now that the whole house is gluten free that you should see some improvement.

Personally, the day before my last blood draw, I was most likely cross-contaminated by a restaurant meal...my numbers on that test were elevated from the previous one. So, I'm sure it's possible.

Other possible sources of CC to check...

Have you been using the same toaster for her bread? If not, she will need a separate one. Toasters are nearly impossible to de-gluten.

Also, if you have been using shared condiments, crumbs can get into mayonaise jars, etc. I agree with a previous poster that if she's in school, that could be the culprit, especially if the numbers have been consistently climbing.

luvs2eat Collaborator

Apparently... or else something else is going on! My youngest DD, who's had a terrible time and is being tested for things like refractory celiac... had repeat blood work to find her numbers went from an 83 to a 79 in 6 months! She is so completely gluten-free, total gluten-free house, all new cookware and an extremely limited diet! Now she's researching all of her meds because her doc suggested she MUST be getting gluten from somewhere!

teresasupermom Rookie

Apparently... or else something else is going on! My youngest DD, who's had a terrible time and is being tested for things like refractory celiac... had repeat blood work to find her numbers went from an 83 to a 79 in 6 months! She is so completely gluten-free, total gluten-free house, all new cookware and an extremely limited diet! Now she's researching all of her meds because her doc suggested she MUST be getting gluten from somewhere!

Well that is a little depressing. I am so afraid that her numbers will still not come down even with us all switching gluten-free. This is so much more frustrating than I ever thought it would be.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Is there any possibility she is getting gluten foods from other children or at school?

mushroom Proficient

If you are still using the same toaster, cast iron pans, colander, wooden and plastic utensils and cutting boards, you are spreading cc every day. Your daughter may be a super sensitive and overreact to the smallest amount of gluten. I know it is expensive, but I would replace all those things, breadkmaker if you have one, everything that you cannot guarantee you can totally rid of gluten particles.

Luddie Newbie

I just got my dd's latest celiac panel. She's been diagnosed and gluten free for almost a year. Her first check at the 3 month mark levels were going down and doctor was pleased. The last two checks levels have been going up. I just got the results today and they said IGA was 53 and "highly positive". We have just this week switched the family over to entirely gluten free. We have had most of our meals completely gluten-free for some time. We only had to switch the gluten-free bread and cereal. Everything else was switched - pastas and other recipes. Now my sister and I were talking and she asked me if CC was enough to make her numbers this high or if it's possible I am missing something. I really think we are cooking everything gluten-free, but figured I'd pose this question here. Do you think CC is enough to be causing these high of levels or do you think I am missing something? Obviously there is the possibility I may be missing something, but mostly wondering if CC can cause this high of an elevation alone.

I, too, am having a problem with getting gluten somewhere. Apparently it is hidden in a lot of plain foods. I'm even now wondering about meats that are fed grains! My tests were going down, but suddenly started going up even after I had stopped eating anything but plain "naked" foods. I'm keeping a food and activity diary and hope I can pinpoint at least some of the stuff that bothers me (the big D and muscle/joint pain). So with time you'll get it figured out but it does really seem overwhelming at first. I checked with all the manufacturers of my meds and they all claim that they use no gluten products in the manufacture, but only one calls their products gluten-free.

Good luck and hang in there. It will be worth it in the long run, and even if your teenagers don't "get it" right now (how important it is) they will someday thank you and will take it seriously.

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. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.