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Wow! I had a lot of response to my post asking if a biopsy was necessary with a negative blood test and positive Enterolab results.
I've summarized below and will again after a few days. My appointment went well, the doctor was knowlegable and respectful of my opinions, although my kids may be freaked out by his turban! He is running a bunch of blood tests. He recommended the biopsy but wasn't insistent. He mentioned pros and cons. I felt confident, informed, and able to make my own decision because all of you took the time to write. Thank you. (I'm leaning away from it, but haven't decided.)
Leila
I have my first appt tomorrow with a gastroenterologist. I read that
biopsies are now outdated with the new stool tests. Is this true and how
hard should I argue with him if he insists? I was diagnosed by Enterolab.
You need a biopsy to confirm the damaged done to your small intestines. This would indicate celiac disease. If your doctor wants to have a biopsy, I would go with it. I have had 3 biopsies in a 12 year period. There is nothing to it as you are lightly put out and don't remember it.
I had the biopsy. It was I, not my doc, who really wanted it, although she did think it a good idea. She trusted the anitbody test--my scores, which I didn't ask for left her with no question in her mind. But, the biopsy is called the "gold-standard" and I personally did not want to embark on this restrictive diet with out it. The test, although not pleasant, was not bad. They gave me drugs to relax and it only took a short amount of time.
I would suggest you to ask your questions at this other excellent GF for CD
http://forums.delphiforums.com/celiac/messages
There are kind and knowledgeable people there, including doctors with CD, and
an extensive GF product list.
Hi, frankly I would not go for a biopsy, but that is my opinion. Find a
good homeopathic person or naturopathic person, and they will tell you what
is going on. Any more a good knowledgeable doctor is extremely hard to find.
I refused the biopsy 15 years ago when told that the diet would prove to do
the trick, well, still on the diet and do well.
That information is absolutely not true!! Biopsy is still the gold standard of diagnosis. The problem with the stool test is that physicians will not believe that you have celiac without the confirmation of a biopsy, and they will not order tests and other treatments accordingly. There is a lot of controversy about the stool testing. The things that I have heard, is that just about everyone who is tested is told that they have CD. You do have more information since you have the gene, although that doesn't mean you have CD either. (It just means that you are at risk to develop it)
Also, just because gluten makes you sick, doesn't mean you have celiac disease. You could have a food allergy, which is much better to have. If it is just a food allergy, you may be able to eat gluten in small amounts after you have been off of it for while. This would make your life sooo much easier, as you wouldn't have to worry so much about contamination in restaurants, etc...
The other advantage of having a biopsy is that it can diagnose other problems, such as Barrett's esophagus (which is what I have, in addition to CD). This is a pre-cancerous esophagus that is caused by acid reflux. It is fairly common with CD.
It sounds as though your mind is set, just like mine was when I saw the gastroenterologist. The only suggestion I have is to get your mind open and seriously consider everything he says. He may come up with something you haven't thought of. Open your mind. Pay attention. Tell him/her you'll think about it, and then do just that. Take home what he says and check it with your own research and find something that works best for you. You are the consumer here. You decide what will and won't be done with your body. He suggests. You decide.
The reason that I know so much about the food allergies, is that I have them. I was strictly gluten free for a year and a half and didn't get any better!! I was totally disabled! I was tested for delayed food allergies, and found that I have 23 different food allergies, in addition to CD. Going off those foods is what turned my life around! There is a lab in Fla that does the testing via the mail, (they also do the blood testing for celiac) If you don't get better in 3 months, they give you your money back. They literally saved my life! Did you get the blood testing done for celiac? If so, what did it show?
If the Enterolab results satisfy you, isn't that what you were
after? The doctor can insist all he likes -- if you don't want a
particular treatment -- it's you who will insist you don't want it. You
have the final say in any treatment. After all, if gluten makes you
sick, what more evidence could anyone want! I wouldn't even go to the
gastroenterologist after being diagnosed already. What purpose would a
biopsy serve if you are going gluten free anyway. I'm self-diagnosed and
doing very well.
My son's gastro wanted to biopsy him. We said "No." It didn't happen.
It is your body afterall. And from what I have learned, unless the biopsy
is done with the right amount of samples from the right places and the
slildes are done properly and read right, the biopsy is next to useless. We
felt that with the results of the blood tests and the dramatic changes from
the diet, we were convinced that my son had celiac and refused the biopsy.
Biopsy is still considered the "gold standard" of celiac diagnosis. Enterolab
themselves will tell you that they can detect "gluten intolerance" with the stool
test. Technically, you only actually have celiac disease if your intestines show
damage, ie. blunted or flattened villi. What Dr. Fine has said is that being found
gluten intolerant on the stool test is similar to finding out you have high
cholesterol- you change your diet to avoid the heart attack. You do not wait to
have heart damage before you make changes to lower your cholesterol. Similarly,
when you learn you are gluten intolerant, you should stop eating gluten in order to
protect your intestines from damage, and not develop actual celiac disease. Now,
you may already have true celiac disease with damaged intestinal villi. Only a
biopsy can give you that answer. You should know that many people are concerned
that a biopsy could miss patchy early damage in your intestines. Imagine trying to
check someone's mouth for a cold sore- if you look at the wrong place in the mouth
you might say the mouth is fine, even though the patient could point out the
painful sore easily. Unfortunately you cannot point out damaged spots on your
intestines to your gastroenterologist! So if your biopsy is negative, it is
possible that the damage is still too early to detect, even though you know darn
well from your symptoms that something is wrong.
So, to biopsy or not to biopsy? It is an individual choice.
Pros: Some biopsy because they find they can't stick to the diet without definitive
100% gold standard diagnosis of celiac. Also, the biopsy can rule out other
possible causes for your symptoms. (you could be gluten intolerant but have some
other intestinal issue going on too.) A biopsy tends to reassure your doctor that
they have reached the correct diagnosis, and that helps them develop a treatment
plan for you. Naturally doctors do not want to order you to make such a life change
as a gluten free diet without definitive diagnosis.
Negatives: You have to keep eating gluten until the biopsy, and you might be pretty
sick while you wait. Biopsy might be negative, then you have to decide if you
believe results or not! Given what you have said, you probably will want to try a
good 100% gluten free diet anyway and see if your symptoms improve. (Then you think
why do a biopsy if I am going to go GF no matter what the results are?) The biopsy
itself sounds scary, but I've had one- and was very nervous, but it was a piece of
cake, so I would not let that worry you.
Continued next post
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