Sherry& (about CD)/Donna

[Guest guest]

Hi, Everyone.....Donna....I give Gareth an Acidophillus tablet (OTC anywhere)

whenever he gets a Lactaid tablet for milk products. He's always on

antibiotics for one reason or another and a pharmacist told me it wouldn't hurt

him....only help IF he needed it. Sherry and .....I am the

one

needing info. Gareth has tested positive for 3 yrs. now by the blood work.

His first biopsies 3 yrs ago were negative. He had an endoscopy done a month

ago for his GERD and ulcer followup and the Doc did bx. of the small intestine

because he was positive for the blood work (IgA) again. When the doc came out

of the OR, he told me everything looked fine....throat, stomach and small

intestine. He had pictures for Gareth to take home and showed me on the pics

how

'normal' everything looked. Well..........one of the 8 bx came back as

" suggestive of CD " but due to positioning of sample, nothing definitive. Even

his

doc is at a loss as to what to do. He has none of the symptoms of CD and is

not malnourished in any way!!! I am really struggling with whether to

implement the diet. If all the symptoms are from a damaged small intestine and

his

looks normal.....why bother? The doc recommends that I slowly withdraw gluten

products....like over the next yr. or so. Kinda like, get him use to it. I

realize you guys aren't physicians, but testimonials from parents are better in

my book. I am also wondering if the OTC supplements he gets (Vit. E, Centrum,

Lactaid, Acidophillus, Fish Oil, and Flaxseed Oil) have helped him in

delaying the onset of the damage to the villi. Lots of questions....all given

to his

Dr., too. I just haven't gotten any answers. I am also very skeptical about

the whole CD thing....supposably it's 1/250 people in the US who have it.

Perhaps, it's only the extremely sensitive people who have to be on the diet. I

don't know....and I don't like not knowing!!!

Take care, Everyone.

Margaret

[Guest guest]

Margaret, you're not gonna like my answer any better than 's:-)

tests positive for endomysial antibodies but we were also told she did not have

CD when she was scoped. Our double PHd nutritionist who is celiac told us at the

time (about 5 yrs ago) that she herself had had opposing results from scopes and

that she did not consider them the gold standard that they are held up to be. We

started on GF/CF diet the day after the scope anyway just because she is a

real " responder " to dietary intervention and our neuro actually agreed that it

was indeed helping some kids with autism to have better behaviors and lessen

autism symptoms.

This turned our to be true in our case. Her greasy smelly poops got better

(she too would NEVER have been considered malnourished due to her weight...which

is normal, but she was due to malabsorbtion which is another story). Her

behaviors got better; she felt better. We have reintroduced gluten a few times

in the past years to see what happens. The first time she went in our bedroom

and pooped on my Husband's pillow; I thought this was funny as he was on a trip

to the Bahamas anyway and I was stuck home. Later we would give her a couple of

strands of spaghetti and she actuall got drunklike.....laughing hysterically and

acting truly weird. So we've stuck with it.

Unfortunately, like alot of people we didn't see miraculous improvement

until we put her on the specific carbohydrate diet (NOT low carb)

www.pecanbread.com You can read about the original celiac diet here which kind

of got adulterated into GF/CF cause the latter was easier.

This is a ton of work, believe me. And if we hadn't seen such dramatic

improvement over GF/CF (It IS GF/CF itself) I would never have kept up. But this

diet turned her around in two weeks and all her labs proved the change. It also

turned me into a very old woman who needs an army to help cook for my child. And

I HATE cooking. Beware because, just like the GF/CF list and website the diet

proponents can be a bit evangelical to say the least.

I have one more chance to sleep before hubby leaves again and I gotta go

take it. be back later.

Sorry I didn't say what you wanted to hear :-))

Sherry

[Guest guest]

One more thing...we just had examined by the head GI guy at U Miami who

has been around a long time. he said that it was extremely unlikely that she

could blood test positive to CD and not have it. In fact he wanted to do another

endoscopy but as she is already GF I'm not gonna take her off for 6 mo. just to

do the scope. I'm trying to remember more... also used to be bloated before

GF and had alot of pain as the day progressed and she ate more. This started to

happen again a couple of years later which is why we went to The SCDiet.

also however has severe gastritis and is on prevacid 2X day for the past 4 yr.

Good luck with whatever you decide.

Sherry