Vent

August 1, 2006

What's stopping you from putting him on a gluten-free diet?

You don't need a prescription or doctor's permission to do it. Yes,

you do not have a definitive diagnosis, but you do have a positive

blood test, and possibly a doctor that doesn't really understand

celiac.

Try putting your son on a gluten-free diet for 4 weeks. If you are

already gluten-free, you probably understand all that that means.

Measure and weigh him now, and then again in 4 weeks. See how he

does. If you see a positive change with the diet and he had a

positive blood test, then you'll know if he is celiac, even if the

doctor doesn't " get it. "

Maureen

>

> I just need to vent about my sons doctors. My son turns 6

tomorrow and

> in january he had a positive blood test for celiac. In february

he had

> an endoscopy that was negative for celiac but with signs of

gasritis.

> I was told to keep him on gluten and give him prevacid for the

> gastritis. It is now August and he has gained a total of half a

pound

> in six months. Neither his Gi or his pediatrician want to change

> anything so he can be rescoped in a year and see if anything has

> changed. In the meantime my son is not growing. Am I wrong or

should

> he be placed on a gluten free diet to see if this fixes the growth

> problems? I have been GF for almost 2 years, I had a positive

biopsy

> after getting so iron deficient i passed out while driving. My

father

> also died as a result of cancer possibly related to his late

diagnosed

> celiac disease. Shouldn't my sons doctors take these facts into

> consideration while treating him?

>

> Thank you for listening, I needed to get that out.

>

August 1, 2006

My DDs doctor also said she was not celiac but she does have the genetic marker

and all the symptoms. She is 16 and was just under 5' tall. She was 21.5 " at

birth and 7#10oz. She just grew very slowly after that and stopped at 16 years

old. She has osteoporosis so badly that she broke about 15 bones from the ages

of 6 to 14. Her biopsy showed inflamed villi. Her doc only took 4 samples and

said she is definitely NOT celiac. She went gluten free anyways and has grown a

full inch this past month. She is thin but she works out regularily and eats

only natural foods with no added salt or sugars and very low fat. She doesn't

eat red meat or pork either. She also had a rash all over her back and arms

that is almost gone now. She has gotten her energy back, her joints don't hurt

and she has only had 3 stomach aches in 5 weeks, one severe, and two mild. She

had stomach aches almost everyday before.

SO, I agree with everyone else that has said, go gf. It is in the best interest

of your child. If we had known years ago, my daughter would not have had to

endure years of pain and broken bones. I am thankful though that she found out

now. I suspect I have it and am waiting on tests back. I have had issues my

whole life also, including the dx of 3 autoimmune diseases. I went through

enterolab and had our whole family tested. The results are not back yet though.

Our son is almost 8 and is autistic which also runs along with celiac.

Take care and don't worry about venting. I think we all feel the need sometimes

and thats what support groups are for.

Hugs,

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

August 1, 2006

Get new doctors immediately and put him on a GF diet immediately! The positive blood test and your family history would be enough for me! My daughter was thriving until she was about 2 1/2 yrs. old. Did not have the typical intestinal problems (other than large, smelly oily stool)--only that she was getting withdrawn, irritable, craving pasta and milk all the time, her hair was no longer shiny and did not seem to be growing at the pace of other kids her age, she was getting colds more frequently than previously, her belly button seemed to be becoming an "outy". She was still 90% range in her growth chart. Her pediatrician told me all of this was normal toddler behavior, including the "toddler belly" and that she would outgrow it.... I had never heard of Celiac until I was scouring the internet looking for possible diagnoses for her symptoms (which can be scary because there are alot of horrible diseases out there!). I persisted and finally had her blood tested for Celiac, which came back very high. The gastro insisted on doing an endoscopic biopsy, but I refused because I did not want to put her through that. Instead, I had her stool tested and gene test through enterolab (both of which came back positive) and immediately put her on a GF diet. Within a few days we saw an immediate difference. She just turned 3 in mid-July and is absolutely thriving. We were lucky to have caught her problem before too much intestinal damage and neuropathology---and while the GF diet has changed our lives completely (we used to go out to eat alot), I am thankful that CD is all she has.

Listen to your instincts as a mother. You know your child like no one else.

Vent

I just need to vent about my sons doctors. My son turns 6 tomorrow and in january he had a positive blood test for celiac. In february he had an endoscopy that was negative for celiac but with signs of gasritis. I was told to keep him on gluten and give him prevacid for the gastritis. It is now August and he has gained a total of half a pound in six months. Neither his Gi or his pediatrician want to change anything so he can be rescoped in a year and see if anything has changed. In the meantime my son is not growing. Am I wrong or should he be placed on a gluten free diet to see if this fixes the growth problems? I have been GF for almost 2 years, I had a positive biopsy after getting so iron deficient i passed out while driving. My father also died as a result of cancer possibly related to his late diagnosed celiac disease. Shouldn't my sons doctors take these facts into consideration while treating him?Thank you for listening, I needed to get that out.

August 1, 2006

I think you might feel better by reading the medical literature on the

accuracy of the current diagnostic tests for CD. I was shocked at the

level of inaccuracies, it's no wonder millions of people are living

daily with pain, " IBS " , and generally sick blah.

I googled and googled for hours when my oldest son's test came back

negative for antibodies, positive gene, and yet his metabolic

screenings were identical to his celiac brother. The inaccuracies

begin with the blood test and move on to the biopsy.

In absence of total villi atropy, none of the test are even 50%

accurate! So, you're child could be sick, but not sick enough, long

enough to have enough damage to show up on the limited test available.

Have you thought about doing Dr. Fine's test with Entrolab? I've

given it serious thought even though the medical community at large

does not agree with the results. It was more for my own peace of

mind, but I haven't decided to spend the money yet.

I do regret to a point not realizing that a biopsy was needed for firm

diagnosis and without it he isn't truly a Celiac. But he was soooo

sick, I just wanted him well fast. I regret not doing the biospy at

his sickest (even though he was not eating anything at the time and

very little gluten, less than 2T of food daily for a 3 yr old mostly

fruit) b/c that would have given the best possible chance for a

positive result. Now, we'll have to go back on gluten at some point in

the future and hope it makes him sick (dreading that he will have to

suffer), but all for the purpose of his medical record and dealing

with schools, military, etc. I'm not looking forward to 3 months of

gluten, this 4 weeks or 6 weeks simply isn't long enough IMO from the

research I've done. We'll likely do this when he is older (8 yr old

or so) and able to understand. IF he starts gluten and then decides

it's too much, then we'll for go it. Right now, he's just starting to

eat nearly a year after being GF.

It is a hard decision, fight doctors or make your kid well NOW. I

think you are probably so right that he has CD.

As for family, I told our families that he has Celiac Disease. No one

questioned us as to 'did a doctor tell you this'. They knew we were

waiting on test results, but do not understand the full scope of

testing required for a 'gold standard' result.

I haven't had any issues with my son's preschool. And I do not expect

any issues with the public elementary school year after next. Our

pediatrician is comfortable is saying " suspected Celiac Disease, on

Gluten Free diet " , but she wrote out a nutrition consult for 'Celiac

Disease'. If I need something more, I'll cross that bridge when I

come to it. Bottom line, no school wants a lawsuit on their hands for

forcing an allergic child or suspected allergic child to come into

contact with the offending allergen and get sick. So, the same goes

for a Celiac and gluten.

Rejoyce

VA

August 1, 2006

- It's important that the biopsy be seen by a dr.

who knows what he is looking at. Stunted villi,

those that are not completely flattened, just short,

may look normal to a dr. who hasn't seen lots of them.

Does the person who looked at your son's biopsy have a

lot of experience? This could be a problem with an

otherwise careful shot at diagnosis.

This celiac thing is sooo complicated!

Barbara in SoCal

__________________________________________________

August 1, 2006

- It's important that the biopsy be seen by a dr.

who knows what he is looking at. Stunted villi,

those that are not completely flattened, just short,

may look normal to a dr. who hasn't seen lots of them.

Does the person who looked at your son's biopsy have a

lot of experience? This could be a problem with an

otherwise careful shot at diagnosis.

This celiac thing is sooo complicated!

Barbara in SoCal

__________________________________________________

August 1, 2006

Yes, your son's doctors should take that into consideration, you're right. Could you mention those things to them?

-----Original Message-----From: SillyYaks [mailto:SillyYaks ] On Behalf Of mamahead74Sent: August 1, 2006 1:46 PMTo: SillyYaks Subject: Vent

I just need to vent about my sons doctors. My son turns 6 tomorrow and in january he had a positive blood test for celiac. In february he had an endoscopy that was negative for celiac but with signs of gasritis. I was told to keep him on gluten and give him prevacid for the gastritis. It is now August and he has gained a total of half a pound in six months. Neither his Gi or his pediatrician want to change anything so he can be rescoped in a year and see if anything has changed. In the meantime my son is not growing. Am I wrong or should he be placed on a gluten free diet to see if this fixes the growth problems? I have been GF for almost 2 years, I had a positive biopsy after getting so iron deficient i passed out while driving. My father also died as a result of cancer possibly related to his late diagnosed celiac disease. Shouldn't my sons doctors take these facts into consideration while treating him?Thank you for listening, I needed to get that out.

August 1, 2006

Why don't you just fake a letter from the doctor to you that says in no

uncertain terms that this child may not ingest gluten. I know it is deceitful

but sometimes you have to get creative.

'Mean' to not let him have cake and treats???? 'Mean' to not let your child

have the poison that he is allergic to? Some people will never get it.

I have been dealing with a degenerative muscle disorder for 8 plus years and I

have had comments like 'if only you lost weight' or 'if you would just exercise'

or 'if only you would go to the gym' or 'you're too young to be sick' or 'you

don't LOOK sick'......UGH. If only losing weight (you try doing that while

living on 60mg of prednisone/day) and going to the gym would make me healthy, I

would quit eating and move into a gym. My favorite was whenever I felt good

enough to go out and could manage a shower, styling my hair and putting make up

on, I would inevitably have someone say 'but you don't look sick.....'.....when

you knew darn well they were thinking 'look at her, she looks perfectly

fine.....'. That would be the one day-if that, I felt good enough to get out.

And, if make up and hairspray would make me healthy, I would by cases of it! It

just isn't so!

It is hardest for the people close to you. I don't understand that. My husband

(whole 'nother talk show) told me one time that he thought I was faking illness

sometimes so I didn't have to clean the house. I went from clean freak who

worked out and walked all the time to just not able to and to have the person

that is supposed to be the most supportive think I am faking my degree of

illness, it really does suck!

OK, sorry to get on a tangent! I will step down of my soapbox now......UGH!