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

Feeling Defeated....

massagemamaof3

Recommended Posts

massagemamaof3 Rookie
massagemamaof3
Posted

My daughter had her first 6 months blood work done the other day and I got the results back yesterday. Her TTG levels are 119. We have a gluten free house and she has gluten free lunch at school. I'm feeling so defeated right now and I have no idea where to start looking for the areas she's getting glutened at. Anyone out there have this same thing happen?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Did it go down?  Six months may not be enough time for it to get to "normal".  

 

I would look at the school as the most likely cause of gluten.  Are you sending a lunch or do they claim they can make her a gluten-free one?  What about eating other people's food?  Not sure of her age, if she is old enough, is she getting non gluten-free food at friends' or going out?

 

I would just re-check the foods at your house.  Sometimes people don't realize something that seems gluten-free contains gluten.  

massagemamaof3 Rookie
massagemamaof3
Posted
  • Author

She's 12 and is really cautious about what she eats she ate a "gluten free" brownie a few months back and had such bad stomach cramps for 18 hours that she's even more careful. I also make sure that she uses gluten-free shampoo, conditioner, body wash, and toothpaste. Her lunch at school is a pre-packaged gluten-free lunch. She will be taking her own lunch starting next week. I called her other dr to see what the beginning number was and it only said it was greater then 100 but not a specific number. I'm hoping that it just started out really really high.

kareng Grand Master
kareng
Posted

She's 12 and is really cautious about what she eats she ate a "gluten free" brownie a few months back and had such bad stomach cramps for 18 hours that she's even more careful. I also make sure that she uses gluten-free shampoo, conditioner, body wash, and toothpaste. Her lunch at school is a pre-packaged gluten-free lunch. She will be taking her own lunch starting next week. I called her other dr to see what the beginning number was and it only said it was greater then 100 but not a specific number. I'm hoping that it just started out really really high.

 

 

Maybe it has gone down a lot, but you can't tell.

 

I know you think she is really cautious but she is a 12 year old girl.  I think I would have a little chat about the possible damage she might do to herself if she cheats.  No need to accuse her, just a friendly mom reminder  - brittle bones, no growth, late puberty, etc.

 

One thing some kids do - IF I can eat it at home, its OK at another home.  For instance, kids eat rice Krispy treats at home made with gluten-free cereal.  They don't realize the ones at school or Suzy's house are made with non-gluten-free Krispies.  They just assume they are all the same.  

 

My son knows a kid with Celiac.  His mom says "He is really careful".  My son says he sees him eat all kinds of gluten stuff when mom isn't around.  

StephanieL Enthusiast
StephanieL
Posted

It took over 3 years to get down to "normal" and has jumped back up unfortunately :( It can take a while.  My DS's did come down at the 6 month mark but it wasn't anywhere near what I was hoping it would be.  I would start with only food from home for now. It takes away a lot of the questioning.  

jcarroll Newbie
jcarroll
Posted

My daughter was diagnosed with Celiac Disease 5 years ago and her levels are still not normal. She is absolutely positively not getting gluten. We charted her food intake for weeks and submitted to a nutritionist and everything looked fine. She even had another biopsy and her intestines look fantastic. Her TTG level was 266 when she was diagnosed and is now down to 33. So its going in the right direction. Two doctors told me it just takes longer for some for their levels to come down.

Cara in Boston Enthusiast
Cara in Boston
Posted

Our 6th month check up was still positive but since it was lower than the original test our doctor was not at all concerned.  As long as it is going down.  If she wasn't gluten free it wouldn't be going down and the symptoms would not be gone.  I'm sure you are doing a great job.

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

Celiac.com Sponsor (A8-M):


massagemamaof3 Rookie
massagemamaof3
Posted
  • Author

Thanks everyone. I feel reassured that things are going in the right direction. Since neither of the drs offices can seem to find her starting TTG number I'm just going to assume it's getting lower :)

Archived

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

Go to topic listing

  • 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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

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

      My only proof

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

      My only proof

      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 m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    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

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      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
      My only proof

      By Jmartes71 · Posted

      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
      My only proof

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By AlwaysLearning · Posted

      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.   
×
×
  • 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.