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

Fed Up


flowermama

Recommended Posts

flowermama Newbie

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.


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



Celiac.com Sponsor (A8-M):



frieze Community Regular
  On 5/10/2012 at 4:50 PM, flowermama said:

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.

pricklypear1971 Community Regular

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

Try am ND.

Di2011 Enthusiast

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,129
    • Most Online (within 30 mins)
      7,748

    hafa1991
    Newest Member
    hafa1991
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aussie Celiac
      Sometimes celiacs can also have other things like lactose intolerance which is fairly common. Also research fodmap foods, it's quite complicated but there are some other foods which can cause digestive issues. For me it's too many onions and garlic.
    • Wheatwacked
      You may be reacting to some of the ingredients used to imitate gluten products. I eat Amy's Chilli quite often with no problems. When I eat Bush's chilli beans or Hormel Chilli with the same ingredient list, I get heartburn.  Break out the alka seltzer.   Barillo spaghetti has CORN FLOUR, RICE FLOUR, MONO AND DIGLYCERIDES. Udi's White bread Ingredients - water, tapioca starch, brown rice flour, canola oil, dried egg whites, sugar, tapioca maltodextrin, tapioca syrup, sorghum flour, less than 2% of: rice starch, sorghum grain, flaxseed meal,  gum blend (xanthan gum, sodium alginate, guar gum), apple cider vinegar, apple fiber, molasses, salt, amaranth flour, teff flour, yeast...
    • Soleihey
      My TTG was 167 one year ago. Recently had it retested one month ago and it went down to 16. I only recently had an endoscopy done as I was pregnant within the last year. I did not eat gluten prior to this endoscopy as I get very sick. Prior to obtaining the biopsies, the endoscopy said “ diffuse moderately erythematous mucosa to the second part of the duodenum without bleeding.” However, the biopsy came back negative. I assume it’s a false negative as I have also had genetic testing to confirm celiac. However, what would cause the inflammation to the second part of the duodenum and continued positive blood markers if the intestines have healed?
    • TerryinCO
      Thank you for direction.  Eating out is a concern though we rarely do, but I'm prepared now.
    • trents
      This might be helpful to you at this point:   
×
×
  • Create New...