Cincinnati Celiac Support Group Google Group

RE: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-20T18:57:12Z

My son before he was diagnosed with CD vomited every 4 to 6 days and usually
from midnight to 2 AM. It seemed at the time there was a tie to when we
would go out for food whether it be just ice cream or dining out in general.
For us though it has gone away since being diagnosed with CD and being on a

"Refractory" sprue

2008-07-20T18:32:17Z

There is a condition called "refractory sprue" but it is quite rare. It's essentially a continued immune response (with continued symptoms) even after gluten has been eliminated. It's not well-understood. I'm not entirely sure if this is the same thing as collagenous sprue, but I think they might be synonymous. Collagenous sprue is refractory by its definition, and there's thought to be no cure for it, even if gluten is eliminated. I'd have to do some reading up to refresh myself on the difference (if there is any) between "refractory sprue" and "collagenous sprue."

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-20T17:48:25Z

I am one of those people who went off the diet for testing in April and
it is just in the last few days that I have been feeling like the INSANE
indigestion with post beer guzzling- like burping is starting to
fade(Thank God). I too had a negative biopsy but elevated IgA antibodies
and obviously symptomatic. The GI guy said "I can't diagnose you as

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-20T11:46:14Z

Sounds like the second doctor probably knows what she is talking about; being gluten intolerant can make you very ill if you eat foods with gluten. People who have celiac disease are gluten intolerant also, and the gluten damages the gut. With the diagnosis of gluten intolerance in general, it is my understanding, that you can be sick all over. In some people it also takes a few days after ingesting gluten before the effects of gluten are known. I am not a doctor, not even a good patient, but you probably need to follow up with the second doctor and keep your son off of gluten, maybe dairy and sugar also. If you are intolerant of something that means you can't eat it whether it is dairy, nuts, chocolate etc.

Vomiting

2008-07-20T02:13:06Z

Nancy,

The vomiting problem sounds peculiar indeed. John's suggestion of a food diary is an excellent one. I also agree with John that you should paying attention to other patterns beyond food, such as his activity and other things. Is there anything else that happens every 8 days for your son? Like soccer practice or a friend or relative visiting or anything like that? Stress or anxiety can commonly produce vomiting (psychogenic vomiting) and these are things to think about when no other obvious cause is present. Just another thought...

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-20T02:06:10Z

AOL EmailNO test is 100% accurate - including the genetic tests. It is frustrating when a physician tells you to do something you know harms a patient just because a test returns a "negative" result. He could have gluten sensitivity, or gluten allergy even if he doesn't have celiac disease. Ignoring gluten when it obviously causes a problem and advising you to give it to him...advising you to cause harm is ridiculous. Unfortunately, we hear it all the time, from all parts of the country.

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-20T01:36:38Z

AOL EmailHello Cincinnati Celiac,

I've just had a very frustrating issue with my son:

He's had "classic Celiac Symptoms" since he was on solid foods as a baby. He is currently 5 and thriving on a GF diet. However, we moved to Milwaukee and he had some odd symptoms of vomiting and I was concerned he was getting hidden gluten, and I took him to Children's Hospital of Wisconsin. Well, long story short, we did the genetic test for Celiac it was negative, then they told me to put him back on gluten, he was not celiac, he should be fine.

Gluten Alert

2008-07-19T19:35:32Z

From GlutenFree Indy, excerpt from a post on a well known chocolate
bar:

Thank you for your email regarding Ghirardelli Chocolate. The
60%Bittersweet Chocolate Chips are manufactured on a line free of
gluten. In June 2008, the Ghirardelli Chocolate Company introduced
new milk chocolate bar which has a barley gluten as an ingredient. As

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-17T22:13:58Z

I know at our daughters school last year, they would provide a baked potato
and salad for her lunch if she wanted to buy. She just needed to let them
know that morning. Also, they had seperate tables for allergy children, not
just peanut allergies and she could choose friends to sit with her. They

[cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-16T14:28:18Z

jen diana
the cincinnati rock group
is meeting sat July 19 1:00 until at 862 ackley 624-9003
for cover dish and rock is supplying hots dogs burgers meat gf buns and
regular buns
swimming for all pit fire marsh mellows etc day evening if kids can
hang that long
parents can talk about school b- day parties play dates several of

Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-16T14:14:14Z

Jen,

There are certain aspects of the American Disability Act that apply to
a biopsy proven Celiac. These same aspects also apply to a student who
has Asthma. Neither are "visible" disabilities, but the school still
has to comply--it is written specifically in the ADA about "invisible
disability". It does mean providing a GF lunch if requested in the

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-16T13:37:06Z

Diana-
This really interests me. What do you mean about schools complying? Certainly they can't be required to provide a gf lunch? My daughters principal has never been in the least supportive and just always acts like I am annoying him when I question him (likewise the nurse who probably doesn't know what CD is). Could anyone let me know more info on this subject?

Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-15T14:52:13Z

You mention the blood test came back negative. Did she have the gene?
My 21 year old daughter was tested recently, the test didn't come back
positive at this time but it did show she had the gene. She is trying
to be gluten-free but is having trouble at her age. It is true many
people are gluten intolerant and don't have Celiac Disease.

Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-15T14:49:11Z

The "official label" gives you the ADA benefits that apply, especially
to students. The school has to comply. The "official label" (biopsy
proven Celiac Disease) also allows for one to claim GF specific food
and mileage on the car used to obtain it on taxes (Federal; each state
also has its own laws on this). A doctor's note alone officially would

Re: [cinciceliac] Re: HI.MY DAUGHTER IS GETTING TESTED.

2008-07-15T01:13:10Z

To the family asking about the Colonoscopy,
I believe you need an endoscopy, upper GI, & biopsy. The colon may not be necessary.