Problems With Gastro-doctors?

[MusicStudent]

Hi, I just found out Monday via a blood test that i have celiac disease, but for some reason my doctor didnt really tell me anything about it other than, I have to go for an endoscopy friday. In fact, the blood work was done about four months ago, and he didnt tell me about it, until i asked him about the results. Of course, I had no idea what he was talking about, and called my sister who is in medical school, who ALSO had no idea what it was.

I guess my main concern is, this IS a serious problem, as long as I can control it, but how long have I had it? I've had a bad stomach since I was young, and now Im just finding out what is causing it? Not to mention, I learned how to try to get it under control from reading books and so on, and not from doctor's instructions. Now, I haven't had my endoscopy yet, but isnt this the kind of thing a doctor should explain to me right away? Am i overreacting to this, trying to learn everything about it as possible, or am i handling this correctly?

- Steve

[KaitiUSA]

Yes the doctor should have explained this to you right away. The problem is a good percentage of the doctors today do not know what they should about celiac disease. It is not something covered well at all in medical school. It was thought to be uncommon but it is not and is starting to get noticed more.

If your blood tests were positive you have celiac disease. Do you know which tests you had done? The endoscopy that is being done is to see if there is damage and if so how much but you have the disease.

You are handling this correctly and you need to learn as much as you can. You may have had this since you were a child. It's hard to say with each individual case how long they have had it. It can be activated at anytime. Of what you are saying you have had stomach problems since you were a kid so I would guess you have had it at least since then. Alot of people just are not diagnosed for a while..it's hard to detect because some people just do not have symptoms. At least you found out now.

I would also recommend finding another doctor who is knowledgable about celiac disease. Otherwise you may get false information.

Good luck and this is a great place for info and support...let me know if I can help at all

[MusicStudent]

The doctor had said something about only 2 of the three tests for celiac were covered by my insurance but they were positive. Are some more accurate than others? Is the endoscopy bad? And most importantly... whats the policy on gluten in milk and cheese?

btw, finding this message board was the greatest thing that happened to me, reading your guys topics and help is great and is exactly what i need. 8-)

- Steve

[KaitiUSA]

He did not do the full celiac panel which includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG and EMA are not usually ordered by them but they are the most specific. If 2 of the 3 tests came back positive for you though then I think you have something going on and it may just be starting to be detectable in your blood.

If your blood tests are positive you have it. The blood tests have a very low false positive rate. The endoscopy is not bad they will take samples of the intestines to see if the villi is damaged. The problem is if there is no damage or sporadic damage they can miss a diagnosis. So if you have positive blood tests go with those. The endoscopy you can get done to see if you have damage and to what extent but don't rely on that for the diagnosis.

Gluten is not in milk and cheese...well it can be in some but not usually. The problem is from damage to the intestines some people can have problems digesting lactose. Once the damage heals that can go away. I was lactose intolerant on and off my whole life until I went gluten free and I have no problem with it now.

Some people just have sensitivity to milk but that is separate from celiac.

[MusicStudent]

thank you so much for your help. I have my endoscopy tommorow, and its extremely refreshing to have a general knowledge of the testing procedures. I appreciate this so much.

- Steve

[mommida]

If the villi are damaged then you should avoid dairy until the villi have healed. The tip of the villi is involved with digesting lactose.

Good luck with your endoscopy! Our thoughts and prayers will be with you.

Laura

[Carriefaith]

In most situations we have to teach ourselves about celiac disease. If I had done no research and just had the info that the doctor and nutritionist gave me... I would probably not be 100% gluten free.

Good luck on the endoscopy and if you have a choice get at least some sedation.