Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

This Diagnosis Process Is Maddening!


  • Please log in to reply
21 replies to this topic

#16 Lfrost

Lfrost

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 111 posts

Posted 09 July 2012 - 06:39 PM

Lfrost,

Smoking tobacco does, for some, suppress celiac symptoms.

I am almost hoping that it is celiac related! I REALLY do want to quit, but when I did (5 years ago) I had not heard of Celiac, so didn't know about gluten free. The canker sores began 7 months after quitting and I suffered through them for about 8 months before starting smoking again!

My mother is in Canada right now and has been hunting down a home test kit, but hasn't found one yet. (she is skeptical, but willing to do the home test). She has Ulcerative Colitis, hypothyroidism, arthritis (hip replacement surgery this coming February), chronic canker sores, breaks bones easily (currently in a boot for a broken toe). Basically, if she tests positive I am going to quit and will retest for Celiac. We might also then pursue the testing with my son. Also my older children would then be tested.

So I guess it all rides on Mom's diagnosis! LOL. If she can't find a test kit while in Canada, I will just buy her one off the Internet!
  • 0

Celiac.com Sponsor:

#17 Darn210

Darn210

    Cookies!!

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,729 posts

Posted 10 July 2012 - 06:41 AM

Just wanted to throw out that I am a parent that needed an official diagnosis to get an accommodation at school. I did not have to go through a 504 process . . . the school was perfectly willing to work with a note from my daughter's doctor.
  • 0
Janet

Experience is what you get when you didn't get what you wanted.


Posted Image

#18 Lfrost

Lfrost

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 111 posts

Posted 10 July 2012 - 07:45 AM

I am a teacher at a school and while most teachers and school personnel will work with you and accommodate, A 504 is still as good idea. I would particularly add into the 504 that the people who work with your child are 'educated' about your child's needs. There are many people who have never even heard of celiac before.
  • 0

#19 StephanieL

StephanieL

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 783 posts

Posted 10 July 2012 - 11:15 AM

Most schools would prefer you NOT have a 504 because it involves paperwork and added meetings. I as a parent would not NOT have on no matter how well the school was dealing with things. A 504 plan is a document that ensures my DS's allergies and Celiac are handled in a way that everyone knows about and we are all on the same page. It also give me legal recourse if they don't do what they have said they would to protect my DS.

An IHP does not do that so I would not have it any other way.
  • 0

#20 Darn210

Darn210

    Cookies!!

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,729 posts

Posted 10 July 2012 - 11:40 AM

I would not hesitate to go for a 504 if I felt the need for one . . . and will in the future if I ever do feel that need.

I believe that the need for a 504 is dependent on the age of the child and the circumstances. My daughter has always self-advocated for herself. I'm lucky in that she has never tried to cheat on this diet. She has ramifications and she wants to avoid them as much as I want her to avoid them. She also knows that she can play the "everyone else got" card and I will totally (over)compensate for whatever she's missed out on ;) From the get-go, she has questioned/refused/requested labels on any food that anyone has tried to give her. I don't really consider this "normal" for a girl her age but she's great at this.

A contributing factor is the school nurse that we've had for my daughter's entire elementary career. She goes above and beyond.


If I had a child that didn't do those things or an even slightly uncooperative/difficult/non-celiac-aware environment, I most likely would go the 504 route to make sure my child was safe.
  • 0
Janet

Experience is what you get when you didn't get what you wanted.


Posted Image

#21 Mom-of-Two

Mom-of-Two

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 230 posts

Posted 06 August 2012 - 06:01 AM

Just wanted to post an update on us- I decided to take my celiac doc's advice, and keep the house gluten free to make it easier/safer for me. It was really not a huge transition, and once it was underway I decided I better do follow up tests on my daughter since her gluten would be limited to outside the house- the dr had ordered retest of the ttg, running endomysial, full CBC with iron, vitamin D.

The only blood test she had for celiac initially was ttg, three months prior, her level was 78.20 at that time, had a normal scope/biopsy with absolutely no damage found.

Her results of these labs:

tTG- 44 (<20 normal) this is down from 78.20 so I am assuming the 2-3 weeks off gluten at home only was enough to take that down?

Endomysial- positive. Her result wa 1:40 and range was <1:10 normal. I was confused by this test because my EMA test just said positive with no numbers or scale.

CBC- normal iron, high % of lymphoctes, maybe inflammation??

Vitamin D- low, level of 27 (30-80 reference range)


Insurance denied gene test but GI is still appealing, he thinks they will cover it although now I don't find it all that useful knowledge. In reality, I have celiac myself, so the genetics are there :)

He also had his own pathology re-read the biopsy from the other GI doc, I am supposed to speak with him today but I do not think there was anything out of the ordinary or he would have called me prior.
  • 0

#22 Bubba's Mom

Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts

Posted 06 August 2012 - 06:38 AM

:) :) :)


I completely agree. We stopped testing after a negative blood test for celiac, but positive for allergies. I hate the doubt in the back of my mind that we should have done a biopsy or continued with possible Celiac. My son's reactions and symptoms make me question each day if there isn't something more to this than allergies. Even though the response would be the same (gluten free) I can't help but wonder. I also now look at my older children and wonder, could that be gluten related? But without a positive celiac diagnosis I wonder if I am being a hypochondriac.

My bloodwork was also negative, but I still smoke. The reason I smoke was because when I quit I got UNBEARABLE canker sores all over my mouth. At one time I could have over 30. One even ulcerated to the bone on my gums. My doctor and dentist were both baffled. The only thing that worked was to start smoking again. Could I have put Celiac/ NCGI into remission? I have read that smoking can put it off.....who knows.

Celiac is such a tricky, tricky thing! And I will always question at the back of my mind.

When talking to the Dr. at Mayo Clinic I said I felt better back when I smoked! I quit so I could be more healthy. My asthma got worse and my digestive issues got worse. He said that smoking suppresses Celiac symptoms.
Just wanted to confirm that issue. :)
  • 0


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: