6 replies to this topic

[DLayman]

I posted for help on another board I am on to get the doctor to listen and do the blood panel.. I really needed the words to put it politely.. consisely and get results.. well someone sent this line....


"I understand the direction you are going but as a mother I feel that this (insert name of test, problem, procedure, etc.) will give me peace of mind. Is there a medical reason not to perform this test prior to continuing? (they say yes or no...almost always no). Great....when can we schedule it for?"

I think it will get results.. I will be trying it out at the next doctor visit..
Denise

[GFdoc]

As a physician, I can sadly tell you that you may still have trouble...alot depends on what type of insurance you have! For patients with HMO type insurance, doctors get penalized for ordering expensive tests - we have to show justification for doing so...and in many cases, it is hard to do. Some doctors are good at writing letters with a good "spin" to make the case, some doctors don't want to be bothered. Some have an ego problem and don't want patients telling them what to order...
Offer to pay out of pocket for the test if you can't get the doc to order the test (check the cost first - it may be absurdly overpriced.)

[GFdoc]

I have another thought on how to get your doctor to listen to your concerns re: celiac disease.
Next time you have an appt with the doctor, bring copies of doctor-written articles on celiac disease from respected journals. Stuff written by non professionals has very little influence on most docs. Here is a link to a good article:
Celiac Disease review article This article is a little old, but it is still very good.

another review article appeared in The New England Journal of Medicine on Jan.17, 2002. Volume 346, pp.180-188. You can't get to it online without paying a fee, but you can probably get it at your library.


Personally hand the articles to the doctor, ask him/her to give you a call when he/she has read them to discuss IF he/she thinks that you may have reason enough to get tested for celiac disease(or schedule another appt to discuss in a few weeks). Don't mail the articles or leave them with the nurse or receptionist... they will likely never be seen again.

Hope this helps!

[DLayman]

Well I would hope I would not have to hand the 'premier' ped. gi doc of the children's hospital information about celiac.. he has already done an endoscopy which came out negative but I have found more times than not that young children have this happen. Also he had been on a pretty much gluten free diet for the better part of 4 months .. the last two months he was gluten-free except for a half a peice of bread a day..
So if insurance was going to take issue with anything I would hope they would have taken issue with the endoscopy..

that all said you think I have a chance?

[GFdoc]

If he knows so much about celiac disease, you'd think he'd know not to do the biopsy while the child is on a gluten-free diet! (remind him of this at your next visit-not that he should've known better, but that perhaps the results were inaccurate...)

What are you asking for him to do next? another biopsy? or the blood work? neither will work well unless you put your child back on full gluten diet for at least a couple of months.

[DLayman]

He was taking in at minimum a half a slice of bread a day two months prior to the biopsy. It may not have been enough gluten in take.. or he may just not have damage. He is now on a regular gluten to the hilt diet.. since the tenth of the month he has not had any good bms.. all loose and yucky.. about 1 to 4 a day right now.. ooh I take that back he had one.. but that was after a 24 hour period of him really not eating anything because he has a cold..
He was on the regular diet about 3 weeks when this started up again.. it's like we are back at where we were when this started last year.
I just want him to do the blood panel and then I am starting him on a gluten-free diet again as soon as that blood is drawn..
The appt is on the 15th so he will have been on a regular diet for 7 weeks.
I still don't understand why he did the biopsy first..
clueless..
especially since I have been told that he has had to be bullied into it in the past..
We just had a fecal fat and trypsin test done as well those came back normal..

[gbeauvais]

Hi!
I'm new to this forum, so please excuse and correct any mistake in protocol. Thanks.

I finally found my celiac disease by reading "Dangerous Grains". My symptoms were not classic, but I've had all kind of GI problems all my life, and the confusion/depression kind of stuff. None of the doctors could spot it.

Anyway, after I finally got a diagnosis, I did a lot of research and kept coming up with a link, although infrequent, between celiac disease and Rheumatoid Arthritis (RA), which my husband has. He didn't think he had celiac disease because he doesn't have GI symptoms and doesn't understand that you can have celiac disease and have some very atypical symptoms, or no symptoms at all. I got him to ask his rheumatologist about it, but the rheumatologist just poo-pooed it and I got the feeling the he was giving my husband the standard "tell her not to worry her pretty little head about these complicated medical things" line, which was the attitude he had when I met him on one of my husband's visits. That was the same attitude I got from many of the other doctors when I was trying to get my own diagnosis. If I hadn't finally fought my way through all the people who didn't know what they were talking about and paid for the blood tests and biopsy myself, I still wouldn't have my own diagnosis. Getting my own diagnosis gave me a tremendous boost in self-confidence. Now I know that I can trust my own research.

I still wanted my husband to be tested. So I got all kind of articles from Reader's Digest, Woman's Day Magazine, and a bunch of GI doctors and the Celiac Foundation. I also included a handout from the Celiac Foundation called "10 things doctors may want to know" or something like that, which talks about how often celiac disease is misdiagnosed because doctors aren't trained to look for it, and circled that part. I had a whole stack of stuff. I left each article open to the page that referenced RA and circled the reference. I wanted to make it as easy as possible for him to scan and get the pertinent info in 30 seconds or less, which is about the length of time I thought the doctor would devote to looking at the stack of articles.

Then I got my husband to bring it to his doctor on his regular visit, which I think he did just to shut me up. (;>). But I didn't care why, I just wanted him to be tested. It worked, I think I embarrassed the doctor into doing it, because he gave my husband the orders and he will be tested during his next blood test. The doctor told him that he doesn't have celiac disease, but that's what kills me. He can't know that without at least screening for it in a blood test and even then, he may not be able to tell. The doctor is just convinced that he would be able to tell. I'm sure it's because my husband doesn't have the classical GI symptoms. Whatever the reason, I'm just hoping that he does have celiac disease, because I really believe that there is a connection and that the GFD will help him. Keep your fingers crossed for me. I will post on here if it turns out to be right. Thanks so much for this forum. As I've said, I'm new here and newly diagnosed, but so happy to have gotten diagnosed and on a GFD. I've been sick for so long and things are getting better every day.

Gerri