Celiac/Was Possible Failure to Thrive?

[Guest guest]

Laurie,

Thanks for the clarification. You're right, I didn't mean that a

diagnosis isn't worth getting. I meant that my child will be gluten-

free regardless of the diagnosis because he can't tolerate gluten at

all. I suspect that he has CD and we follow the same regimen that he

would follow with a CD dx. That's why I spend so much time reading

up on the topic!

Here's where I would hold a different opinion - regarding my child

only. He wouldn't last the three weeks of gluten. He would be like

one of Jurgen's statistics - a psychotic break. A trace of gluten

now sends him into uncontrollable rage, depression, and horrible

noises in his head. He goes from near NT into a horrific state that

he both recognizes, but cannot leave. That's in addition to the pain

and diarrhea. We run for the pepcid ac like a house on fire. We

don't need a stamp of approval from a doctor or lab to be

glutenfree!

Fortunately, CD is finally getting some serious attention in the US.

I'm hopeful that before my son reaches the age when he needs to

concern himself with passing on a genetic condition, there will be

easier ways to detect the condition. For that matter, I'm hopeful of

a cure. Meanwhile, we are strictly 100% gfcf in this household, so

it doesn't matter what label is used for diagnosis.

I fully share your concern about the lack of recognition of this

devastating disorder. Our health has improved emormously since we've

become aware of CD. Ian's on the honor roll & healthy. I'm no

longer suffering from FMS (altho chelation played a big role in

that). Seeing us improve so dramatically has inspired others to

request CD testing. A close friend who suffered from chronic

depression throughout her adult life was found to actually have CD,

and the quality of her life has also improved enormously. I wonder

how many others are suffering needlessly under an erroneous dx.

Thanks again,

> 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.

>