New And Confused

[Guest aimees]

Wow I love this site. I have learened more info from everyone here than I have learned from the doctors. My son is 7. He has been vommiting and having diarrea for about 3 years. It is not constant though. He "gets sick" about three time a month. I read the Febuary issuse of Parents Magizine, and found the article about Celiac. I asked my ped. to test him and it acame back that yes he did have Celiac. Now before this. The GI specialist At DUKE said he had abdominal migraines, and wanted to place him on steroids, to " fatten him up. Can you believe that? So now after taking him off gluten, he was a different child, the circles under his eyes were gone, and when he was hungry he will now eat and stay full. The bad thing now however, he did not have a biopsy right away. So now I have to put him back on gluten so we can see the damage. He was gluten free for two weeks. Now he has to be on gluten for two weeks before his procedure on May 16 at Duke. Im frustrated and angry that all this was not explained to me by the specialist to begin with. My ped. told me to take him off gluten as soon as we got the blood test back. I did that and then I bought the book by Danna Korn, found out about all the other testing and began asking questions that ginally led to where we are now, which is basically at the beginning. Now I just glad to be able to get all of this off my chest. I dream about reading labels and shopping in the "speciality stores" My son lso has IgA defficiency, are there any specific questions I should ask the doctor at Duke?

[Guest aramgard]

Please, do not take this the wrong way. I am a nearly 70 year old Celiac, just diagnosed 3 years ago. I have been having problems since I was agout 8 or 9 years of age. If your son is doing better on a gluten free diet and it t'were me, after what I have been through, I would not bother with the blasted testing further, but put him on a gluten free diet and never look back if he responded. This is a brave new world of doctors who simply do not understand what Celiac is about, and many of them are just too stubborn to admit that they do not know what to do about this disease. If your son responds to the diet, teach him how to eat according to what he can eat without causing him to become ill and do not look back. I am the poster child for misdiagnosis. I do not want another generation of children to become victims of our health care system. Shirley

[tarnalberry]

I agree w/ aramgard... I had inconclusive blood tests, but positive results on the diet, and that's all I really care about. If your doctor won't take the results of a dietary challenge seriously, AND you still care that it is clearly documented on his records (AND you don't want to try a different doctor), then maybe. But there are pros and cons to having it on your medical record (difficulty getting insurance later in life versus not having it known if your unconcious, etc...).

[wildones]

I agree with the other posts. Why would you put him back on gluten to confirm what you already know ??? Especially going back to the same place that totally missed the diagnosis in the first place. The purpose of the biopsy is to see how much damage has been done to the upper GI tract (if any yet) to see how far things have progressed. There is not anything that would be done differently as far as treatment (the gluten-free diet is how you treat celiac disease) if celiac disease was 'officially' diagnosed. If your son has confirmation with the blood work and most importantly confirmation with improvement on the diet. Why give him the harmful gluten ? You can be gluten intolerant and not yet have damage to the villi yet.

I have heard the argument several times on this board that an official diagnosis would be needed if a patient was unconscious and in the hospital, and I don't see any possible scenario where that would be needed. If you are unconscious and in the hospital you are not being fed by mouth ! IV feeds as far as I know (my son was on IV feeds for 6 months) does not have gluten in it. If you are conscious (or if your child is conscious and in the hospital and you are speaking for them) then you can let them know about dietary restrictions and Rx restrictions that are taken orally.

General medical records are not obtained when a patient is in critical condition or when they go into the ER. One of my sons has had a very long and complicated medical history. Between him and his brother and sister (triplets) I have made many, many trips to the ER and have seen 19 different specialists, some of them very frequently. None of them have ever asked me to PROVE that my son has celiac disease, they take your word for it !!!!!!

I feel very strongly that if you have confirmation another way, that a biopsy is not necessary, and can actually be harmful in the long run. A lot of doctors will say if they do not see any evidence of flattened villi, then to go back to eating gluten, and it is not a good idea to do that !!!!

A endoscopy is not a big deal as far as I am concerned (my son has had 32 surgeries and proceedures and I see it the same as some might see a very minor thing, like stitches or whatever ...). I do think if enough biopsies are not obtained or the right lab is not looking at the slides (they are not looking for increased lymphocytes) then you can be given very bad advice as far as resuming gluten, if not in the hands of a very experienced GI dr.