Re: From Missy - gluten

[Guest guest]

If they biospy me for it, I will keep that in mind and eat some gluteon,

probably a plateful of pancakes.

This strategy is very likely to give you a false negative (useless) result. For

accurate testing results, one needs to be eating a ***substantial*** amount of

gluten for a ***substantial*** amount of time. A plate of pancakes beforehand

just isn't going to have any effect. Ask your doctor what you need to be eating.

Inform him or her as to what you ate before testing.

Many people have negative CD blood test results and a positive biopsy. I was one

of them. I most definitely have CD.

You'll have better luck researching this problem if you use the spelling

" gluten " .

<<I used to think the autism gluteon connection people wanting to believe that

something would help (like snake oil) - until I got this test and found about my

liver damage and saw my numbers go down. >>

I don't think that eating gluten-free (if that's what you mean) will affect your

liver numbers.

<<After that I started my son on gf too. although because I hate to isolate him

more than he already with is social interaction difficulties, I allow him

cupcakes at parties and stuff. He seems to be doing better on the diet.

Eventually, I should probably get him tested for celiacs. >>

Eating gluten-free is so difficult, especially for a young person, that I'd hate

to see him in that situation without strong reason to do so. Also, as I said

earlier, you must be eating gluten to have the best testing results. The longer

he goes without gluten, the harder it will be to get meaningful results. He

can't just eat some gluten shortly before testing; that doesn't work. Eventually

testing him for celiac disease, after going GF, could be wasted effort.

If he really does have celiac disease, small, occasional amounts of gluten, such

as a cupcake at a party, can be causing " silent " damage to his bones,

neurological system, etc. A child with CD just can't handle any gluten -- even

if there are no obvious symptoms. There are many sources of gluten that you may

not be aware of. For example, play-doh contains wheat flour.

Please talk to your doctors about this, explaining your situation in detail. In

the meantime, go to sources such as celiac.com and celiac.org for more

information. There are sites specifically for children with celiac disease.

Harper

[ ] Hi

Heya,

I just joined this group. I have been in the pbc group though.

I was diagnoised this month with aih/pbc stage 2 and fiborsis.

I am 35, married, mother of a 5 year old son with autism (but he is doing well

and getting lots of thearpy)

I am on urso right now. They might add imuran in 3 months, depending on my liver

test result.

Here mostly for support and suggestions.

Also curious about other people's experience with being on imuran.

Also positive anas, amas, anti-smooth, rnp and I had a biospy recently which

showed the damage.

Thanks,

Missy

[Guest guest]

Heya,

Alright, thanks for replying again.

Maybe we should back on the gluten and try testing him and biospying me.

some parents of kids with autism calim even with negative celiac tests, their

kids did better with no gluten.

Maybe my liver numbers went down for another reason, I don't know, its

confusing!

Missy

________________________________

From: Harper <flatcat9@...>

Sent: Tue, February 22, 2011 5:56:35 PM

Subject: Re: [ ] From Missy - gluten

 

If they biospy me for it, I will keep that in mind and eat some gluteon,

probably a plateful of pancakes.

This strategy is very likely to give you a false negative (useless) result. For

accurate testing results, one needs to be eating a ***substantial*** amount of

gluten for a ***substantial*** amount of time. A plate of pancakes beforehand

just isn't going to have any effect. Ask your doctor what you need to be eating.

Inform him or her as to what you ate before testing.

Many people have negative CD blood test results and a positive biopsy. I was one

of them. I most definitely have CD.

You'll have better luck researching this problem if you use the spelling

" gluten " .

<<I used to think the autism gluteon connection people wanting to believe that

something would help (like snake oil) - until I got this test and found about my

liver damage and saw my numbers go down. >>

I don't think that eating gluten-free (if that's what you mean) will affect your

liver numbers.

<<After that I started my son on gf too. although because I hate to isolate him

more than he already with is social interaction difficulties, I allow him

cupcakes at parties and stuff. He seems to be doing better on the diet.

Eventually, I should probably get him tested for celiacs. >>

Eating gluten-free is so difficult, especially for a young person, that I'd hate

to see him in that situation without strong reason to do so. Also, as I said

earlier, you must be eating gluten to have the best testing results. The longer

he goes without gluten, the harder it will be to get meaningful results. He

can't just eat some gluten shortly before testing; that doesn't work. Eventually

testing him for celiac disease, after going GF, could be wasted effort.

If he really does have celiac disease, small, occasional amounts of gluten, such

as a cupcake at a party, can be causing " silent " damage to his bones,

neurological system, etc. A child with CD just can't handle any gluten -- even

if there are no obvious symptoms. There are many sources of gluten that you may

not be aware of. For example, play-doh contains wheat flour.

Please talk to your doctors about this, explaining your situation in detail. In

the meantime, go to sources such as celiac.com and celiac.org for more

information. There are sites specifically for children with celiac disease.

Harper

[ ] Hi

Heya,

I just joined this group. I have been in the pbc group though.

I was diagnoised this month with aih/pbc stage 2 and fiborsis.

I am 35, married, mother of a 5 year old son with autism (but he is doing well

and getting lots of thearpy)

I am on urso right now. They might add imuran in 3 months, depending on my liver

test result.

Here mostly for support and suggestions.

Also curious about other people's experience with being on imuran.

Also positive anas, amas, anti-smooth, rnp and I had a biospy recently which

showed the damage.

Thanks,

Missy