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Cara in Boston

Member Since 03 Feb 2011
Offline Last Active Jan 15 2015 06:14 AM
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Posts I've Made

In Topic: Handling School Snacks

05 January 2015 - 11:14 AM

I have a 504 plan that we created for my son when he was first diagnosed (1st grade).  I'd be happy to email you a copy.  I used advice from this list and others.  Send me an email at myboytom@yahoo.com and I'll send it to you.

 

Our rule is he only eats food from our house AND pre-packaged foods that say "gluten free" clearly on the label.  And even then, his teacher (or party host) will remove his serving first and keep it separate.  

 

We learned our lesson at camp when the "I-know-about-celiac-because-my-roommate-in-college-had-it" head counselor told him he could eat the graham crackers because she checked the ingredients and "gluten" was not listed.  (Wheat was the first ingredient, but she was looking for the word "gluten")

 

After that (missed a week of summer camp) we don't rely on others to be able to figure it out.  It is not always easy - it took me a while to learn it all.  Now, at age 9 he can check for himself, so it has gotten easier.


In Topic: Questions About 6 Yr Old

05 January 2015 - 11:01 AM

Sounds like you didn't get the whole panel.  My son was positive on 2 of the 5 tests (only the IgG tests) and I was the opposite, positive only on the IgA tests.  His first doctor said he couldn't possibly have Celiac because he had no symptoms (normal growth, no GI issues, etc.) and thought I was just looking for an excuse for his behavior.  ("You've been reading too many magazines . . .")  By that time, I had already been tested and my positive tests were just too much of a coincidence.  We took him to the Celiac clinic at Children's Hospital and they did the endoscopy.  That was found to be highly positive for celiac.  My biopsy was negative, so go figure.  The tests currently available are not 100% accurate.

 

I would push for more tests.  In light of his symptoms and your diagnosis, it seems clear celiac or gluten intolerance is a real possibility.  After all the testing is done, I would try the diet (regardless of his test results) and consider it the "final" test.  I think you will be pleasantly surprised and relieved.

 

My doctor has diagnosed me based on my blood tests and my positive response to the diet, even though my biopsy was negative.

 

Trust your instincts on this.  A gluten free diet can be perfectly healthy (our whole family's diet improved greatly after diagnosis) and you are 100% in control of what you and your family eats.  Keep a journal/log of his symptoms (start now, while he is still experiencing them) and track his progress when you try the diet.  That alone may be enough for your doctor to give him an "official" diagnosis.  

 

We wanted Joe's diagnosis to be "official" to facilitate schools, camps, college dorms, etc. complying with our needs.  So far (three years and two schools later) NO ONE has ever asked for "proof".

 

After he went gluten free, we noticed other changes . . .he looked healthier (still has dark circles, but no longer looks sickly), slept better, no more achey legs (diagnosed as "growing pains"), and he grew . . . like three inches in the first few months.  He was never smaller than average, but maybe he was supposed to be taller than average.  He is on track to be taller than his older brother.

 

His attention span, focus, and even verbal communication (having the patience to carry on a conversation) all improved shortly after going gluten free.  

 

Even without a diagnosis, what I have learned about gluten leads me to believe no one should be eating it.  It causes inflammation and it is not required (nutritionally) in your diet.


In Topic: Help! Confusing Results That Nobody Understands

27 December 2014 - 02:13 PM

Doctors run a panel of tests because everyone is different and immune systems behave differently.  You only need one positive test.  My son was negative on all the IgA tests and positive on only the IgG tests.  I was the opposite.  Positive only on the IgA tests.  We both have celiac. He had a positive biopsy, mine was negative.

 

A negative biopsy only means that damage was not found.  It can only confirm celiac, not rule it out.  The damage could have been missed. There might not be enough damage yet, etc. etc.  Many reasons why the biopsy could be negative.  I would even question your GI . . . doesn't know much about celiac disease if he/she is looking for it with a colonoscopy . . . 

 

Our Celiac specialist considers the diet to be the "final test" . . . try it (be strict) for three months and keep a diary of how he feels and any symptoms.  If his health improves, you have your answer.  I was diagnosed "officially" based on my positive blood test and my positive response to the diet.  My son was "officially" diagnosed based on his positive blood test and his positive biopsy (he had no classic symptoms).  

 

Your son has celiac in his family, has uncomfortable symptoms consistent with celiac, and has had a positive blood test.  Trust your instincts.  See if your husband would support a "trial" diet.  Don't wait too long.  

 

When I was first diagnosed and went gluten free, the diet seemed hard.  Within a week or two, I was feeling SO MUCH BETTER that I didn't care about the things I missed.  Nothing is worth feeling miserable - especially food.  It is just food.

 

Maybe find another doctor.  See if your region has a celiac support group and contact them.  They can recommend doctors in your area who are up to date . . . it took us two doctors before we found one who knew more than I did after reading just one book.


In Topic: Questions About 6 Yr Old

27 December 2014 - 01:59 PM

My son was diagnosed at age 6 (blood test and biopsy) and his ONLY symptom was behavior.  "Rage" is a good word for it.  You could also describe it as "slight frustration = major tragedy" or "inconsolable irrationality"  He was just a mess.  Within a week of being gluten free we had our (relatively) normal little boy back.  Three years later and he is doing great.


In Topic: Talk Me Down From The Edge...

27 December 2014 - 01:52 PM

My 9 year old was diagnosed at age 5 with positive blood tests (IgG only, negative on all the IgA tests) and biopsy.  The first doctor didn't believe he had Celiac despite his positive blood test because he had no symptoms and was not underweight.  He speculated that maybe there was a lab error.  (By that time, I had a positive blood test myself, so there was too much coincidence to give up)  He had the genetic test and that just added to the confusion because he was found to be "not likely" to have celiac.  Weird.  We took him to the celiac clinic at Children's Hospital and they did the endoscopy.  He was found to have extensive damage and has been gluten free since then.  

 

The genetic test WILL NOT rule out celiac.  It really doesn't tell you anything at all, since people with the genes don't always get it and people without the genes can still have it.  There you go.