Re: What do you guys think of this plan of action? (re: dxing a GF child)

[Guest guest]

Wheat, or all gluten? Remember that there is such thing as a wheat allergy without being CD...which also means no GF diet is necessary. So, honestly, I'd eliminate just wheat first and see what that does...and do the allergy testing. What do you think?

-----Original Message-----From: mum2sparky Sent: Thursday, September 30, 2004 9:40 PMTo: SillyYaks Subject: What do you guys think of this plan of action? (re: dxing a GF child)Thumbnail reminder sketch: I have a toddler who has reacted with violent intestinal distress to wheat containing products the few times she has eaten them, which caused us to put her directly on GF foods. I am completely against doing a gluten challenge at this age. We have our consult with a pediatric GI in about a month. Several of the testing avenues are out due to her GF status, so this is what I have decided to do:Prior to the initial consult, I'm going to get the genetic HLA testing done from Enterolab. If it comes back "positive", given her acute intestinal reactions, then as far as I am concerned, we have our diagnosis, even though I realize it won't pass medical muster for most docs. If it comes back negative, then we will look into allergy testing. If that comes back negative too - well, I guess my head will explode (-;Either way, we'll definitely still go to the initial consult, but I woulds really like to have the genetic information ahead of time.I'm feeling really comfortable with this plan and would like to thank everyone for their guidance and support.

[Guest guest]

Hi, and first of all, thanks for your thoughts! Yes, we did do a

wheat free diet only at first. It definitely seemed to take care of

most of the problem, although I have to say we've never tried rye or

barley (though she's probably had exposure via malt). Her reactions

to the only other possible big gluten source (oats) has been mixed -

definitely not as strong as wheat, but enough for us to feel

uncertain. It's so hard to tell at this age.

I totally agree that the allergy testing should be right up there. I

hope the ped GI is receptive to it - if not, I'll return to the

primary ped and ask for it, depending on the test results up to then.

Thanks again!

> Wheat, or all gluten? Remember that there is such thing as a wheat

> allergy without being CD...which also means no GF diet is

necessary. So,

> honestly, I'd eliminate just wheat first and see what that

does...and do

> the allergy testing. What do you think?

[Guest guest]

I am dealing with both a wheat allergy in my self and probable CD in my kids

(which now

makes me rethink my own stuff). I really understand both sides of the question.

I would

really consider getting a serum allergy panel done, while the blood draw in not

pleasant

for a toddler, sometimes we have to do the unpleasant. Besides, you are looking

at having

her blood drawn anyways for the HLA testing. Drawing extra blood is not the big

deal.

Besides, they can also do complete blood counts and metabolic screens which

could help

if anything is off from a possible malabsorption problem. This is what was done

with my

daughter and it really helped the process along. And on only 1 blood draw. We

did the

same with our son. both do not show food allergies, but do show an elevated IgG

which

had previously been passed off with our daughter as her " just normally having a

higher

level. "

As a child, I was supposedly allergic to everything except milk, bananas and rye

crisp. And

that was what I was given for almost the first four years of my life. 38 years

later, I was

diagnosed with wheat allergy (in February, along with soy and yeast) severe

enough

to need an Epipen. I eliminated wheat at that point (and soy/yeast) and had

drastic

improvement, but not complete ending to my symptoms. I was still eating oats and

now

using oat flour. With the new question of CD in my children, I am adding more

oats, rye

and barley back into my diet so that I can be tested. I'll tell you, I feel like

crap; and I

would not wish this on people. It really has made me question if my so called

" allergies "

were not so much allergies as undiagnosed CD. If I was having severe diarrhea at

the same

time they happened to be trying a new food, it could very easily been falsely

attributed to

the new food. Celiac was not very well known 40 years ago and there were no

allergy tests

other than trial and error. My daughter's biopsy came back " negative " , though I

wonder if

he took enough samples and from far enough down to get a really good sampling.

Two

pedi GI's are saying it is not CD, the allergist strongly feels it is and having

her brother

also have elevated levels, gives creedance to likelyhood. They have not asked

about

parental history in depth; in fact, one GI said I couldn't have CD, because I am

overweight.

But besides my two kids, there are two cousins who were " failure to thrive " ,

myself, my

brother whom they gave growth hormones to before age 2 for failure to grow,

several

diabetics, a few with other autoimmune diseases, the list goes on. Every one of

them has

not been looked at for possible CD. If I didn't feel it was so important on a

bigger family

scale to get ONE person diagnosed, I would just make my whole family GF and call

it quits.

I know how I feel eating the gluten. But lots of other people are getting missed

because it

is not " in the family " .

As for the allergies, an accidental ingestion could be life-threatening. With

CD, while quite

unpleasant, accidental ingestions are usually not life-threatening. A GF diet is

far more

restrictive than one just without wheat. For you and for your child. Either of

these

problems are not that bad, as long as you know what you are dealing with. That

is the key.

It won't be that you can't do things, just that you have to do them different.

And you can't

really know how best to do things differently without knowing what the cause is.

Just my 2 cents. Good luck,

Cheryl

[Guest guest]

Thanks, Cheryl, I really appreciate your thoughts! The genetic thing

is something I am kind of doing " in the meantime " as I am waiting for

the initial consult with the GI doctor. It can be done as a saliva

test and I definitely want to do it independently and out of pocket,

as I don't want any genetic testing results to go in my daughter's

medical record automatically (that may sound kind of paranoid, I

know, but I used to work for a research team that looked at genetic

testing-related issues, including insurability, and it made me very

gunshy).

I really do understand what you are saying about the importance of

testing for allergies - probably better than I did before. That's

something I don't have a problem having on her medical record, so I

will definitely bring it up with the doctor and get that done through

our insurance system. Thank you again!

> I am dealing with both a wheat allergy in my self and probable CD

in my kids (which now

> makes me rethink my own stuff). I really understand both sides of

the question.