My 12 Year Old Was Just Diagnosed We Are Waiting For Further Tests

[sslike]

It is killing us not starting him gluten free while we wait to take the next test. i feel like i am hurting my child. was wondering if there will be changes with his growth has only grew 1 inch in past 2 years he is 12 years old and very small.

[cyclinglady]

Hang in there, Mom!

Now that a diagnosis is closing in, I can understand your desire to make your son well! Please wait until all testing is done before going gluten free. It is so helpful to have a diagnosis, especially in a child (school cooperation, diet compliance, etc.).

If he does have celiac disease, he will probably grow!

Take care of yourself and research, research and research the gluten free way of life. Check out our newbie tips under the Coping Section.

[Cara in Boston]

My son was 6 when diagnosed.  We didn't notice his slow growth because he started out taller than average so he always seemed tall.  In the year leading up to his diagnosis (when we first started noticing symptoms) he was off his growth curve, even though he was still average height.

 

It took us 4 months to finish testing, even though I knew we were on the right track as soon as his first blood tests came back positive.  It was hard to keep feeding him things I knew were damaging to him but you really do want to try for an accurate diagnosis.  I assume you are waiting for a biopsy?  You can go gluten free as soon as the test is complete.  You don't need to wait for the results.

 

Take this time to try out some "substitute" foods so that when you are ready to start the diet, you already know which bread (pizza crust, crackers, pasta, etc.) is his favorite.

 

Joe shot up three inches in the month we started the diet and is currently catching up to his older brother (2.5 years difference, so he is growing like a weed.)

 

Hang in there.  It seems like a long wait, but in a lifetime . . . not so much.  Joe hardly even remembers that time.

[mommida]

I would use some of this time adjusting to some gluten free baking. (bake and freeze in serving size portions ~ cause teenage boys are eating machines! )   Finding out favorite brands of gluten free products.  Pamela's, Glutino, Udi's

 

It does seem like a waste of time but it can be so important to have "official diagnoses" of Celiac and rule out any other disorder/ disease that can coexist.

 

I would expect a growth spurt because of his age and when he is gluten free and fully nourished.

[calabaza78]

How long do you have to wait?  Have blood tests already been run and you're just waiting for endoscopy?  When will that be?  This is not advice from a doctor and is generally frowned upon, but I feel compelled to share:  Our daughter was experiencing terrible vomiting episodes whenever she ingested gluten.  After her blood tests came back positive with very elevated levels that left little question we were on the track to a celiac diagnosis, I stopped gluten that very next day.  Her endoscopy was to be held one week later, and I told the doctor that if I knew I could ease her pain and vomiting by stopping gluten, there was absolutely no way I could feed her gluten for one more day with how severely she was reacting.  He said because of her vomiting and the side issues it was causing with dehydration, lethargy, etc., I was okay to begin a gluten free diet as a week off gluten was not going to change much on her biopsy.  Her results came back consistent with villous atrophy from celiac disease, and one week off gluten didn't make a difference at all for her (but it made a difference for me living with her at home and lessening her pain and vomiting!)  I know this is not the norm and it does not follow what most people are told to do, but I thought I would share.  You could possibly ask your doctor if you are in a similar sitation.  

[StephanieL]

  This is not advice from a doctor and is generally frowned upon, but I feel compelled to share: 

 I really think your post could stop there.  There is a reason Dr's do things the way they do and suggesting people go against that often times leads to issues. 

 

While I understand wanting to ease your childs issues I would definitely try to hold off till cleared by your Dr. to begin the gluten-free diet.

[calabaza78]

StephanieL, if you had read my post fully, you would understand I was NOT advising her from the position of a doctor, as I said she should ask her doctor what to do.  I was merely presenting to her the advice our gastroenterologist SUPPORTED: that it was fine to start the gluten-free diet immediately after the blood test results, due to my daughter's condition and the timing of the EGD.  How is sharing my experience invalid?

 

I was responding to a post from a parent who was agonizing over their child's pain and presenting our experience, where starting a gluten free diet right away was acceptable due to the extreme effects vomiting was having on my toddler's body, and the fact that the EGD procedure was only days away.  This was a medically supported decision from a board-certified, well-esteemed pediatric GI, not just my own decision.  I conditioned my response to the OP that what we did was not the norm, but that it was acceptable in our case per our doctor, and in the end, did not interfere with her results whatsoever.  I stand by my advice to ask her doctor about her specific situation, but I see no issue with presenting the experience we had.  

 

OP, I wish you the very best.

[StephanieL]

I did read your entire post.  I understand that you were supported in your decision by your Dr.  That is NOT the process that 99% of the Dr's follow and doing so could lead to a misdiagnosis.  Your experience is 100% valid but it really needs to be stressed that going on a gluten-free diet before the biopsy in 99.999% of cases is a very bad idea.  

 

We ALL want our kids better and well.  Doing that is a top priority for all of us here.  Getting the proper dx is also a top priority too. 

[Cara in Boston]

If you go gluten free before the tests are done, and then you get a negative test, you will NEVER know if it is accurate or not.  If you get a positive, you are lucky.

 

Ds's blood was still testing positive after 6 months of being gluten free.   My tests went from positive to negative after just 10 days.  It is different for everyone.  If you are going to go through the trouble of getting the tests done, why not take every step necessary to get the most accurate results you can?  

 

Even doing everything right, you could STILL get a false negative, so every little bit helps.

 

Of course, if your child is in severe pain, you won't want to wait.  In that case I would insist that I get scheduled sooner.  Doctors can schedule emergency procedures.  You can also get on the "call" list to be notified when there is a cancellation.

[SMRI]

How many people here have had their intestines heal in a week?

[GF Lover]

How many people here have had their intestines heal in a week?

How would someone even know if they didn't have back to back endo's to look.  The Doctors have protocols and do the testing.  Not us.  If you decide to do something against Doctor's orders then you have made that decision and will suffer the consequences if something adverse happens.  You can't really complain about a Doctor if you don't follow what he says, right?

 

That's just how I see it.

 

Colleen

[ryo]

the wait is so hard!  we stopped feeing our daughter gluten right after the blood test (we didn't know better and were told to by our doctor).  it took a few weeks to get into the GI Dr. and then we had to feed her gluten for a month before final testing.  i thought i was going to fall apart every time we gave her gluten but i am SO glad we pushed through it.  it sounds like you are getting towards the end of the testing and can soon move into healing your son.

 

i used the time to clean out our kitchen, learn new gluten-free products, and research what i was going to need to deal with in her school. it helped me to stay busy and moving towards making her life better once the test came back.

 

if you trust in your doctors then remind yourself you are doing the right thing for your son and he will soon be feeling so much better. good luck and i hope you start to see growth (and all types) changes soon!