I'll start with my usual warning: I am not a medical professional, I am a parent with two celiac children. So take what I say with a grain (er crystal) of salt...
First and formost: You cannot get a diagnosis of celiac disease if you have been on a gluten-free diet for a while. How long? It varies from person to person and depends just how much damage there is in the villi of the small intestine. For some people, even a few weeks on a gluten-free diet might be long enough to "mess up" the tests. To diagnose celiac disease you have to do a biopsy and find damaged villi; if your villi have already healed due to a gluten-free diet then no damage will be found.
So if you want to get an "official" diagnosis of celiac disease (which I STRONGLY recommend; see Nancy Lilly's post below of Oct. 21, 1996 for a long list of good reasons), then you should NOT start a gluten-free diet first. Keep eating gluten until after the biopsy (at least), or preferably after the biopsy results have come back and you are told that you do have celiac disease.
Dr. Joseph Murray had this to say in a post to the list in March: "I believe (based on seeing many people with suspected celiac disease) that it is really important to get tested for CD BEFORE going on a [gluten-free diet]. It is hard to interpret the biopsy, the blood tests are unreliable, and the patients are often faced with the very unpleasant task of a prolonged gluten challenge to verify diagnosis."
So why am I bringing all this up? Here are some excerpts from recent posts to the list:
1> ...I am unsure whether to re-consult my doctor....try the 3 (6?)
1> week exclusion diet suggested for Celiacs...
2> ...The dermatologists that have examined me diagnosed granuloma
2> annularis - without any testing....I have just learned about DH/CD
2> and started to maintain a gluten free diet. However, I am in
2> desperate need of a knowledgable and sympathetic physician capable
2> of proper diagnosis.
3> ...I keep reading that I will need to be on a gluten diet for a
3> month to get good results. Unfortunately, I have been following
3> the GF diet for 20 days, with 2 relapses....I am wondering what the
3> blood test will show?...I found some canned gluten in the Chinese
3> grocery....and I was wondering if I were to eat a few cans of this
3> on Saturday/Sunday if I would have the IG-response by Monday (to
3> assure a good test)
4> ...In the meantime I am pursuing a GF diet and feel marvellous as a
4> result. I know I will have to go back on to a normal diet before
4> having the biopsy but can't face it at the moment.
Everything I've read indicates that when you go on a gluten challenge, it takes a lot longer than just a few weeks. Dr. Peter Green, while speaking to the Westchester (New York) Celiac Sprue Support Group last September, indicated that it can take three to six MONTHS or longer on a gluten-containing diet to secure a biopsy-proven diagnosis. In a post to the list on May 8, 1996, Dr. Murray wrote: "There have been a number of attempts to put Celiacs in remission back on a gluten containing diet (also known as challenge). The length of time to relapse varies enormously from weeks to years and may or may not be associated with the same or even [any] symptoms."
If you only go on a gluten diet for a few weeks and then get tested, you really can't be sure of what negative test results mean. It could mean that you are not a celiac. It could also mean that you ARE a celiac that is not yet showing the effects of the gluten. If the doctor performing the tests is unaware of how short your gluten- challenge was, or doesn't realize how long a gluten-challenge should take, then he/she may incorrectly conclude that you are not a celiac when in fact you might be.
Here are some excerpts on this issue from a post made by Dr. Murray in Sept. 1995:
Not medical advice
There are not hard data on this and [there are] differing views. I usually practise the following in adults.
Have the patient take a small test dose like one wheat cracker for 2 days or so. Then if there has not been a horrible or dangerous reaction have the patient gradully increase the intake of gluten over several days to get to a dose of 3-4 wholemeal slices of bread a day. This is continued for 2-3 wekks if the patient has developed classic GI symptoms Diarrhea, bloating etc.
If the patient has not developed any symptoms at all then I continue the diet for 3 months and check the antibody levels. If these are positive then I biopsy. If the patient is asymptomatic I continue the diet for a further 3-6 months and repeat the antibodies.
The tricky bit is where the patient developes atypical symptoms. This situation needs to tailored to the individual case.
A challenge must be discussed in advance with the doctor who must be kept updated on the advent of any symptoms.
Too short a challenge or too little gluten may make it difficult to confirm the diagnosis.
Thanks so very much to all who have responded re/my decision to try for a real honest-to-God medical diagnosis. And, Mike, thanks for the warning to go slow. I have a print-out from Bill Elkus to take to my doctor tomorrow to try to get things started.
It interested me that I had quite a few responses questioning why I want the diagnosis, since the GF diet has sort of proven it by default. This might be an interesting subject for a list discussion.
Since more than one or two people asked, I thought I'd reply to the list.
1. I have a wonderful adult son, & will probably have grandchildren one of these days. If I am a definite, diagnosed celiac, I can convince my son to get tested, plus it will be a known genetic factor to take into consideration medically for my family.
2. And, speaking of family, I am hoping to trace (&think I may know) what the line of inheritance is.
3. I don't like doctors looking at me when I say I have Celiac Disease with that "humor her - it can't hurt, anyway" kind of attitude.
4. I was lucky the last time I was hospitalized for an illness - there was a doctor on the staff who had CD and could front with the kitchen for me - otherwise, I would have had a hard time getting decent food. I may not be so lucky next time, so I want a diagnosis on my medical record. (I know the diagnosis doesn't mean people will know more, but it means that they might give what I have to say more credence.)
5. There are investigations, tests, experiments, etc. going on through USC re/Celiac, and I would like to be available to volunteer, but they only use diagnosed subjects.
6. My mother had Alzheimers, and I live in fear of being helpless & confused, and being fed food that will make me even more miserable. Again, I feel that the "credibility factor" of having a diagnosis that medical personnel will respect is important in so many potentially difficult situations.
7. Even though I think I'm gluten free, a lab test cannot prove that unless we have a test that is positive for antibodies to use as a standard.
8. If I don't have CD, I have SOMETHING that creates the same extensive symptomology, and I'd like to know what the heck it is.
This may seem a bit chaotic, but I don't have time to go back & edit. Hope it make some sense. And again - a big thank-you to everyone who took the time & effort to respond.
Some people wanted to know why it was so important for me to obtain a professional/official diagnosis. I guess everyone has their own set of personal reasons, but for me, these are among them:
1. To convince MYSELF. Even though I feel terrible a lot of the time, I’ve never really considered myself a sick person. Deep down, I feel that if I self-diagnose, I will always be second guessing myself.
2. To convince myself that it may be something ELSE besides CD or gluten-intolerance that’s making me feel so sick. What if giving my illness a name is is just my way of giving up the search?
3. To convince my FAMILY that I may have a real condition and that I’m not just a bizarro or a hypochondriac. They already think I’m a total flake because I’m a vegetarian. If I add another restriction to my diet without a real reason, they’ll think I’m over the top. My own mom (who is a nurse!) is convinced that I am an anorexic/bulimic because she thinks I’m too skinny (I’m actually just right at 5’ and 100-lbs) and because I’m always tired and sickly-looking.
4. To encourage some of my family members who also suffer the same symptoms to be tested for CD as well. My mother and especially my sister have many of the same symptoms that I do and I’m concerned about them, because they don’t seem to feel any need to find out what may be wrong. Maybe they’re afraid or maybe they’re like me and don’t want to be "sick."
5. To have the advantage of knowing this may be a possibility for my own children and knowing I can help them avoid suffering from symptoms (I’m not a mom yet, but someday I hope!)
6. To have the motivation to maintain a gluten-free diet. If this is something I need to do for the rest of my life, then I want to know for SURE, because it seems so-o-o very difficult!! The positive side is that I have always made it a priority to do whatever it takes to live healthy if I know for sure eating gluten is risking my health (as opposed to just making me uncomfortable) then I will never touch it again.
When I started this whole process of determining what was making me ill, I was determined to do WHATEVER I had to do to have a diagnosis in writing, on paper, so that I could hold it in my hands and pull it out whenever anyone questioned why I was making the choices I was making about what I will eat and what I won’t. At this point, I feel much differently about it and I realize that it is not worth suffering just to have that silly piece of paper. It’s not worth losing one more month (or forbid another YEAR) of my life.
This group has been a fantastic support for me. I can’t tell you all how much that has meant to me or thank you enough.
Remember, I am only a layperson. Pay more attention to the quotes from Drs. Murray and Green than to my own opinions.