Is Doctor Really Necessary?

[Susan S]

I've spent the last week in a lot of pain, and this has been an on agan off again situation for most of my life. It's recently gotten a lot worse, however. I was diagnosed wih Lactose Intolerance in 1982, after spending the a dreadful week in the hospital being given tests. I take the one a day lactase enzme, and this seems to help about half of the time.

In the past two years, I've gone from being five feet, 85 pounds to 120 pounds. It appears to be all water weight, until my stomach swells, and I have to sit in a crouch.

Three months ago, I went back to my General Practitioner and she gave me a series of blood tests to check for parasites and such. It turns out I have a B12 vitamin deficiency, but no parasites.

So...this weekend, I'm doubled over at an artists retreat, tring to work, when a friend starts telling me about her Celiacs disease. I check it out the symptoms once I've gotten home, and OMG! I've got almost every symptom there is, right down to the cracks at the sides of my mouth and the dr skin. Oh, and by the way, my father's sister also had Celiacs.

My qusestion is this:

Should I even go through the battery of tests? Maybe I should just try quitting the gluten right away. This is going to be one week when I really can't miss teaching, and I've had to leave several times the past week due to the extreme abdominal pain.

Sorry for the long post, but I'm going through a real moment of possible discovery here, after 46 years of issues.

Thanks for our help.

Susan

[dbmamaz]

Ok, my 2 cents:

Many, many people will stronly recomend you go thru all the testing before quitting gluten . There are some good reasons. For example, as enthusiastic as you are now, if you know for sure that you have celiac, you may have an easier time sticking to the diet. Your family and friends may be more supportive of your new eating habits if it was ordered by a doctor. If you need to stay in the hospital, having celiac on your charts makes it easier to make sure they give you the appropriate food. It also might make it easier to convince other family members to get tested.

On the other hand, all tests can have false negatives. If your blood test is negative, your doctor may refuse to do a biopsy even tho there are people on these boards w/ negative bloodwork and positive biopsy. Biopsies are tricky, since they cant take samples from your entire intestine, they arent guarenteed to find damaged portions of intestine. Biopsies can take weeks or months to schedule, and you have to eat gluten while waiting for them.

There are many people who had all negative tests but still feel better on the diet.

If I were you, this is probably what I would do. I would do a one-week gluten-free trial during this period of time that you really dont want to be sick. assuming you feel better, rush yourself to the doctor and get the testing process started as soon as possible. And of course, no matter what the tests say, go gluten-free after they are done anyways.

Good luck finding your way to health!

[Susan S]

Dear Cara,

Thanks for the good advice. From what you're saying, I can go a week and the gluten will still have left it's mark on the areas testing, right? I think I'll try this and also work hard to get in to see a gastroenterologist. My GP already gave me the go ahead on recieving the referral. I'll see who can get the bloodwork done more quickly, and see if the reguar DR can even manage the labwork needed to test for Celiac's.

Again, thank you for taking the time to help me. I hope I'll have a success story to tell soon!

-Susan

Ok, my 2 cents:

Many, many people will stronly recomend you go thru all the testing before quitting gluten . There are some good reasons. For example, as enthusiastic as you are now, if you know for sure that you have celiac, you may have an easier time sticking to the diet. Your family and friends may be more supportive of your new eating habits if it was ordered by a doctor. If you need to stay in the hospital, having celiac on your charts makes it easier to make sure they give you the appropriate food. It also might make it easier to convince other family members to get tested.

On the other hand, all tests can have false negatives. If your blood test is negative, your doctor may refuse to do a biopsy even tho there are people on these boards w/ negative bloodwork and positive biopsy. Biopsies are tricky, since they cant take samples from your entire intestine, they arent guarenteed to find damaged portions of intestine. Biopsies can take weeks or months to schedule, and you have to eat gluten while waiting for them.

There are many people who had all negative tests but still feel better on the diet.

If I were you, this is probably what I would do. I would do a one-week gluten-free trial during this period of time that you really dont want to be sick. assuming you feel better, rush yourself to the doctor and get the testing process started as soon as possible. And of course, no matter what the tests say, go gluten-free after they are done anyways.

Good luck finding your way to health!

[dbmamaz]

just wanted to say, tho, that you still will have to go back to eating gluten for the tests - but it should be ok to take a one week break if its a really important week.

[aikiducky]

As hard as it might be to keep eating gluten now, I really would recommend that you do. Thing is, being gluten free for a week and then having some gluten again might be surprisingly hard, some people get a much more intense reaction after being gluten free for a while. The window of opportunity for getting all the tests done is now, before going gluten free. And you should keep in mind that this diet is for life. In ten or twenty years time you might be very glad that you had the tests done now.

That said, I also think it's a good idea to try the diet whether or not you get a positive diagnosis from the tests. Some people test negative for celiac but respond very well to the diet for other reasons, so it's worth a try. But I think you should do the tests first.

So now you have two opinions to consider...

Pauliina

[gfp]

As hard as it might be to keep eating gluten now, I really would recommend that you do. Thing is, being gluten free for a week and then having some gluten again might be surprisingly hard, some people get a much more intense reaction after being gluten free for a while. The window of opportunity for getting all the tests done is now, before going gluten free. And you should keep in mind that this diet is for life. In ten or twenty years time you might be very glad that you had the tests done now.

That said, I also think it's a good idea to try the diet whether or not you get a positive diagnosis from the tests. Some people test negative for celiac but respond very well to the diet for other reasons, so it's worth a try. But I think you should do the tests first.

So now you have two opinions to consider...

Pauliina

This is one of those questions noone can answer but yourself and both are equally relevant...

It may not seem a big deal but convincing family members and friends is often way more difficult than we expect... The arguament "but I feel so much better" just doesn't seem to convince many and then it becomes an extra burden in your gluten-free journey.

If you don't already have an appointment its not really just a week... if you try gluten-free and get immediate results it can be damned hard to go backand you also need to decide what level of diagnosis. Will you be happy with blood tests or will you want a biopsy to feel "proof".

Its worth considering that for many going back to gluten can actually have more severe symptoms .. many of us find after being gluten-free for a while that even a small slip and the symptoms are much worse than before.

[MDRB]

Hi,

I suspected that I had celiac disease because I had all the symptoms and a family history. I went gluten lite (no bread or past but had not even considered food additives etc) for about six months before going to see a gastroenterologist who told me that I had to go back onto the gluten for one meal a day for a month. After a week I was so sick that I could barely get out of bed, I don't think I have ever been that sick in my whole life, I was practically comatose!

Needless to say my tests came back positive.

Testing can definitely be inaccurate, but if you go gluten free before hand you increase the chances of this. If you think you might ever need/want a diagnosis you should get tested asap and NOT go gluten free until you get the tests.

[Susan S]

Thanks to all of you for your help and encouragement.

Despite the fact that I have 11 kids turning in their AP prtfolios this week, I'm stuck at home in bed. Tried to get up and take a shower and even got dressed, but I gavein to the pain. I'm now trying to wait until the doctors offices will open and possibly get me an appointment. I guess I'll start with the GP and the blood tests, but also go ahead and make the appointment with the gastro Dr. I don't really know where to begin with eliminating all of the gluten, so even if I try, I'm sure I'll be missing something. Hopefully the tests can be run quickly.

Again thanks to all of you.

-Susan

Chesterfield, VA

Hi,

I suspected that I had celiac disease because I had all the symptoms and a family history. I went gluten lite (no bread or past but had not even considered food additives etc) for about six months before going to see a gastroenterologist who told me that I had to go back onto the gluten for one meal a day for a month. After a week I was so sick that I could barely get out of bed, I don't think I have ever been that sick in my whole life, I was practically comatose!

Needless to say my tests came back positive.

Testing can definitely be inaccurate, but if you go gluten free before hand you increase the chances of this. If you think you might ever need/want a diagnosis you should get tested asap and NOT go gluten free until you get the tests.

[ravenwoodglass]

Call your doctor and get him to call in a lab slip. You shouldn't need to see him as he has seen you not to long ago. Whether you want to biopsy is going to be up to you. You do need to continue to eat gluten until the biopsy is done to get the best chance of a positive. Keep in mind though that both the biopsy and the blood test are only conclusive if positive, even if negative you need to do the diet to be sure. If there is a long wait for the biopsy you could do the diet and then do one of two things, either cancel the endo if you are feeling great (complete resolution of symptoms on the diet IS diagnostic) or go through with it if still feeling ill to check for any other problems.

The other posters are correct are about some of us becoming much more ill with a challenge. I had gone gluten-free and then 3 months later the GI who told me I had IBS for years decided to biopsy since the elimination diet I did with the aid of an allergist had discovered that gluten was poison to me. I challenged for just 3 days and on the morning of the biopsy instead of waiting patiently for the tube to go down my throat I was on my bathroom floor almost unconsious from the pain and bleeding from my intestines, I got my diagnosis but it almost killed me. I am not trying to scare you, I just want you to be aware that at times a gluten challenge can be very difficult and we can end up sicker than we were before the diagnostic process even started.

Another option is to go gluten-free after the blood test and order the testing from Enterolab. They will check for antibodies in the stool and you can also test for casein, soy and yeast if you choose to. You do not have to be actively consuming gluten for those tests, they will remain accurate for almost a year after being gluten-free.

The choice of how much testing to do is up to you, the others have told you many reasons to seek out a firm doctor derived diagnosis. I should note though that some doctors will diagnose with dietary response, there are not a lot of them since they consider a gluten free diet to be hell. It is tough at first but it is so worth the trouble if you need the diet.

[Puffin]

I've spent the last week in a lot of pain, and this has been an on agan off again situation for most of my life. It's recently gotten a lot worse, however. I was diagnosed wih Lactose Intolerance in 1982, after spending the a dreadful week in the hospital being given tests. I take the one a day lactase enzme, and this seems to help about half of the time.

In the past two years, I've gone from being five feet, 85 pounds to 120 pounds. It appears to be all water weight, until my stomach swells, and I have to sit in a crouch.

Three months ago, I went back to my General Practitioner and she gave me a series of blood tests to check for parasites and such. It turns out I have a B12 vitamin deficiency, but no parasites.

So...this weekend, I'm doubled over at an artists retreat, tring to work, when a friend starts telling me about her Celiacs disease. I check it out the symptoms once I've gotten home, and OMG! I've got almost every symptom there is, right down to the cracks at the sides of my mouth and the dr skin. Oh, and by the way, my father's sister also had Celiacs.

My qusestion is this:

Should I even go through the battery of tests? Maybe I should just try quitting the gluten right away. This is going to be one week when I really can't miss teaching, and I've had to leave several times the past week due to the extreme abdominal pain.

Sorry for the long post, but I'm going through a real moment of possible discovery here, after 46 years of issues.

Thanks for our help.

Susan

Be aware that 7 days may not be enough you may go through withdrawal (flu, chills, headache, body aches) for 8 days like I did, so you may consider 12 days, I felt like a new person on my 9th day.

As far as testing I chose Dr. Fine

[Susan S]

Well, here we go...

My GP wanted me to go to the Gastro docs for the bloodwork, and I've managed to get an appt for tomorrow. I'll limit but not remove my gluten. I'm tring to stick to eating eggs, mashed potatoes, bananas and applesauce, with a few crackers thrown in.

Again, thanks for all of your help. If I get started on this diet, it sounds like I'm gonna need all of you to pull through it!

Puffin,

you sound like me with the work and the loose pants. I've taken to wearing log shirts so I can "pop my top" when nessesary.

No Health Insurance? Yikes! I hope I'm not in danger of losing mine. I'm a 23 year veteran teacher. I keep reading abou the Entero Lab. Is this for folks who want to avaiod the insurance jumble?

Ravenwood,

You mentioned the entero lab as a way for being able to go gluten free without sabatoging the test results. I think I'll hav to check out this option, ladies.

Thanks!!

Be aware that 7 days may not be enough you may go through withdrawal (flu, chills, headache, body aches) for 8 days like I did, so you may consider 12 days, I felt like a new person on my 9th day.

As far as testing I chose Dr. Fine

[dbmamaz]

My experience is that 'pre-existing conditions' such as celiac are only a problem if you are trying to get insurance on your own or through a very small company. Most decent-sized company's insurance policies are group policies and do not require you to reveal pre-existing conditions.