Re: [ ] Celiac/Was Possible Failure to Thrive?]

[Guest guest]

Laurie Renke laurie@...> wrote:

For you newbies, this means that if you want your child tested for

CD, do it before starting the diet. Otherwise, you'll have to put

your child back on gluten for several weeks before the biopsy can be

done. (For some of us, that means weeks of sheer hell and not worth

it.)

>>

Dear all,

I have a child with Severe Sensory Issues and I understand what you mean by

" sheer H*** " , HOWEVER< the part about " Not worth it! " in my opinion is

misleading. I am not trying to cause an issue here, I am sure you mean well,

and are just trying to help. And I thank you. I get great information from

this group.

However, No matter how difficult or regressive it may be for your child, and

your family and school, it is worth it to get a diagnosis for Celiac's

Disease " IF " your child fits into the category for high risk or shows many

of the symptoms or has elevated blood work or sometimes the false negative

that were spoke about.

Celiac's Disease is much more common than most people think. Celiac's

disease is mis diagnosed everyday for many different things. Celiac's

Disease is VERY SERIOUS!!!! Celiac's Disease leads to many other harmful and

serious, even deadly diseases and illnesses, etc... Lymphoma Cancer being

one of the most scariest. Horrible Eczema, Stunted Growth, hypoglycemia,

diabetes, etc...

Celiac's Disease has only one cure at present. 100% NO gluten, cross

contamination is a huge issue too. Many people with Celiac's Disease also

have issues with other foods and malnutrition, even though they may eat all

day.

My older son was so sick at the diagnosis, mis diagnosed for years, that he

is 8 and had malnutrition and osteoporosis so badly that he was unable to

play sport and theatre that he loves so much. I know I am going on and on,

but this is serious and I do not want a parent to get content to not put

there child back on the diet(I do realize what exactly that means for some

kids), because it is difficult. People go through operations and surgeries

all the time that are horrible and have months of recovery to better their

quality of life and health in general. Finding Celiac's Disease might just

save their life.

And remember that a Celiac will pass that gene onto their children and

grand children. That is an fact! Again, I do not want this to come off as a

slam in any shape or form, I just want to help paint the picture of what

undiagnosed Celiac's Disease means.

We need to climb a mountain before we can see the spectacular view. Thanks

for reading about Celiac's Disease and giving it some thought. Awareness is

so low with this illness!

God Bless, Laurie Renke

[Guest guest]

Sorry, but if we were to put DD back on a gluten containing diet, she (read

we) would be up every night for about five hours and she would therefore be

unable to learn anything during therapy. For us the sleep deprivation is NOT

worth it. I believe she may be celiac due to her growth history (she dropped

from 50th to 5th percentile in three months when we were introducing baby

cereals) and crawled along at that until

we removed gluten from her diet. In five months she's gained 7lbs and grown

about 4 inches!

When she can understand these things, I'll tell her that gluten makes her

sick. She's not yet four so she's young enough that she'll never know any

other way of eating.

Margaret