Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Fed Up
0

4 posts in this topic

At the end of Novemember my DD was diagnosed with celiac thru blood work. It was her ped that did this. We were sent to a GI, but he was out of the country till the first of the year. Well considering her symptoms were servere and her wheat allergy also tested really high I took her of gluten.

Finally in Jan we see the GI. Who runs his own test including biopsy and guess what she test negitive. Well dah I tell him she has been gluten free for 10 weeks. We make the decision to stick with the gluten free diet since things are going so well and he agrees with me (at this appiontment anyway) that she is Celiac.

Now last week in the process of trying to get things lined up for kindergarten we go back to the GI for help with info to give the school. He now says there is no way my DD is celiac because his test say she is negative, and if I really feel she is then I need to do a 6 to 8 week challenge and re-test.

Man am I fusterated this same doctor just diagnosed her father Celiac 10 days before this appiontment. Its like they cannot keep there patients straight. It took everything I had in that appiontment not to scream in his face. I cannot do a gluten challenge by time we figured out what was wrong with my DD she had been on antibiotic for 7 weeks and still had what we thought was major infection.

Anyway, sorry let my emotions override my piont. I am confused about what to do with school now. Her prescholl teacher was wounderful. She was with us thru the hardest time in my DD life. She has been very careful not to CC my child. My fear is without the accual letter from the GI stating she has Celiac the school is going to think this is a choice I made and not neccessary. How do I get them to understand my child is Celiac and she will become very ill if she even plays with playdo.

Does anyone has any insight on the best way to go about this.

0

Share this post


Link to post
Share on other sites


Ads by Google:

At the end of Novemember my DD was diagnosed with celiac thru blood work. It was her ped that did this. We were sent to a GI, but he was out of the country till the first of the year. Well considering her symptoms were servere and her wheat allergy also tested really high I took her of gluten.

Finally in Jan we see the GI. Who runs his own test including biopsy and guess what she test negitive. Well dah I tell him she has been gluten free for 10 weeks. We make the decision to stick with the gluten free diet since things are going so well and he agrees with me (at this appiontment anyway) that she is Celiac.

Now last week in the process of trying to get things lined up for kindergarten we go back to the GI for help with info to give the school. He now says there is no way my DD is celiac because his test say she is negative, and if I really feel she is then I need to do a 6 to 8 week challenge and re-test.

Man am I fusterated this same doctor just diagnosed her father Celiac 10 days before this appiontment. Its like they cannot keep there patients straight. It took everything I had in that appiontment not to scream in his face. I cannot do a gluten challenge by time we figured out what was wrong with my DD she had been on antibiotic for 7 weeks and still had what we thought was major infection.

Anyway, sorry let my emotions override my piont. I am confused about what to do with school now. Her prescholl teacher was wounderful. She was with us thru the hardest time in my DD life. She has been very careful not to CC my child. My fear is without the accual letter from the GI stating she has Celiac the school is going to think this is a choice I made and not neccessary. How do I get them to understand my child is Celiac and she will become very ill if she even plays with playdo.

Does anyone has any insight on the best way to go about this.

you probably are going to be better off going with the allergy.

0

Share this post


Link to post
Share on other sites

And, get copies of all records and find a doctor, any doctor, to write the Celiac letter.

Try am ND.

0

Share this post


Link to post
Share on other sites

Please don't apologise for being emotional. Your daughter needs you to be!

You should get the wheat allergy letter from your doctor first with something in it about a high level sensitivity to both eaten gluten/cc and topical (to cover the playdough etc).

Then find out who else is available in your region who might be more progressive wrt celiac and gluten intolerance. Get that celiac letter in the first appointment so you don't need to go through all that again. If you don't get it try another. One appointment only. Take a copy of all the history and write a detailed list with letter (with all your and daughters experience) to pass to the clinic before your appointment. Include ALL of her dads information.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,322
    • Total Posts
      920,392
  • Topics

  • Posts

    • sorry i did not see this until a year later.  i changed all my cat food to gluten free products.  right now i'm using a dry food made by Nature's Variety Instinct Raw Boost.  it has both dry food and freeze dried meat.  since my cats lick my face i had to make the switch.  i did not mean to remove your pets from your home.  they are loved ones and they can be eased into the diet if you have not already tried.  the wet food for my other cat is easier to find gluten free but it is expensive.
    • You might want to check out the Gluten Free Watchdog - just google it - and join. Very smart lady there who also has celiac disease. She's gone to the mats for us many times. She knows her stuff! 8 products are tested per month and there are many great articles and videos as well. She's the same lady who does the Gluten Free Dietician but on the Watchdog site, you get the test results of products as well as faster info. on breaking news.
    • After reading these few posts, I really think it all depends on where you live and the doctors attitude about the whole process. I think a biopsy is not always needed.  It depends on the circumstances and symptoms, etc.  Sometimes it is harder to piece together a proper diagnosis while other times it's so obvious.  Many people now do not even have GI issues, which used to be the hallmark of Celiac. This is why it is so difficult for some.  It would be nice if there was a very definitive test that was either positive or negative, with 100% accuracy!
    • Not to beat a dead horse here but I looked at the linked article you provided and it talked about exposure to animal feed in enclosed spaces, not driving or walking near wheat fields on a windy day.  Unless you are a farm hand, feeding cattle or horses with gluten containing feed in an enclosed, non-well ventilated area, it's not an issue. The Fasano diet is a short term diet for those who are slow to heal. Some people do have problems with grains and they found that putting them on a whole foods diet only, many of them went on to heal and could then consume processed gluten free food items like bread.  Lots of people do this in the beginning for faster healing. But it only works for people with Celiac Disease and you aren't even sure that is what the problem is. I posted this so anyone new to the diet reading these things will not become confused and think you cannot walk past a wheat field or a bakery. Inhaling visible wheat flour in a bakery is not a good idea for anyone with Celiac Disease and will make you sick/react and you won't be able to work in one but walking past bread or any gluten containing food is not cause for concern.
    • I react to certified gluten free breads, but it is NOT a gluten issue.  I react to Xanthan Gum.  I do just fine making my own baked goods from scratch subbing out the Xanthan Gum for guar gum.  My gluten-free hubby does well on commercially gluten-free baked goods.  It is just a food intolerance issue in my case.   Look to other ingredients.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,378
    • Most Online
      1,763

    Newest Member
    NightSky
    Joined