So, Tell Me Why I Need This Endoscopy....

[Monklady123]

My doctor says she wants me to have the endoscopy "so we can be sure." Okay, but... why? I am now totally gluten-free and feeling fine! If I have a bite of gluten I feel bad. Therefore, I am sure! Isn't blood work sure enough? She told me that I have to eat gluten every single day for a month -- a MONTH?? -- before the endoscopy. I said no way. First of all I don't have a month when I can just lay in bed because I have a job, and two kids, and a husband who travels, etc. And second, even if I did have nothing else going on in my life why would I *want* to spend a month in bed? (alternating with the bathroom). So I'm not having it, unless she wants to do it without all the gluten.

Anyone else opt not to have this test? Is there any reason why I absolutely ought to have it? If so, how do you survive the gluten challenge?

[GlutenFreeManna]

Are you in need of a doctor's note to convince your family, your employer or some other reason like to get a tax break? If not then I say skip it. You are sure and you have no intention of touching gluten again. It sounds like this doctor just wants to be able to bill you/your insurance for another procedure (assuming you are in the US). I would find another doctor that is willing to diagnose based on what you already know. A positive blood test if you have one and positive reaction to the gluten free diet should be enough. Some people here were diagnosed based on their inability to complete the gluten challenge for testing.

[mushroom]

Sounds to me like you have already done a gluten challenge, either accidentally or on purpose, if you know how you will react. Nobody can force you to undergo an endoscopy - the choice is entirely up to you. The procedure itself is a good idea to rule out other problems but the month-long gluten challenge where you are harming your body just so your doctor can be sure you have celiac, when you already know you do, is not a good idea. You are just doing yourself more harm. I'm not sure how long you have been gluten free. Was your blood work recent or some time ago? If it was fairly recent there is a chance the endoscopy could still be positive too. If it was long ago, and you have responded well to the diet, that should be sufficiently diagnostic without torturing yourself further.

There are many on this board who have had just the blood test, many more who have not had any testing at all, just figured it all out for themselves (I am one). Perhaps I should confess that I have had an endoscopy, but not because they were looking for celiac disease - the idea never occurred to them and they took no biopsies.

Unless she is willing to do the procedure without the challlenge, I personally would skip it.

[scarlett77]

What I don't understand is if the blood tests showed Celiac, why was an endoscopy not done at that time? I wonder if your damage is really healed enough to the point that an endoscopy wouldn't show damage? Does anyone know? I would think even after a month of gluten-free there would still be damage left or at least an indication that there was previous damage??? Anyone know?

[IAtodd]

I'd say don't do the biopsy. I was given that choice when my blood test came back as IGA-deficient and thus useless. Why destroy your body for a month and then cough up lots of money just to be "sure"? Will knowing change your lifstyle? Will you magically be able to eat normal food just because you are "sure"? Nope. So why punish your body more than it's already been punished? If someone has a counter-argument, I would love to hear it. BTW, you COULD do a blood test for a gluten allergy (RAST test)... if that comes back negative but gluten makes you sick, then by process of elimination it seems to me that it would have to be celiac disease. I haven't doen the RAST test ($$$) yet but will within the next year or so. If the RAST test tests positive for a gluten allergy, then it's possible that you'd have both an allergy AND celiac disease...

[ksymonds84]

There is a chance that staying gluten free for a month will be enough time to heal your villa (if not total antrophy) and then you would get a false negative and your doctor would say you don't have celiac. As said in another post, if you are only doing it for the doctor and not because you want it then I would skip it unless you are concerned about other issues. I hated the gluten challenge and in the end I did have damage but it also made me a mess and set back my healing I believe for at least 3 months. I didn't know that I had fructose malabsorption and that was what was still giving me symptoms causing me to doubt my gluten intolerance diagnoses. Also, the out of pocket expense was still over 1,000.00 with my particular insurance. So if you can except that you are celiac with the blood test alone and you feel fantastic on the gluten free diet with no other issues, I would say skip the biopsy and get on with healing.

[GFshay]

What I don't understand is if the blood tests showed Celiac, why was an endoscopy not done at that time? I wonder if your damage is really healed enough to the point that an endoscopy wouldn't show damage? Does anyone know? I would think even after a month of gluten-free there would still be damage left or at least an indication that there was previous damage??? Anyone know?

My doctor told me the small intestine (the site of the damage in Celiac) is one of the fastest-healing parts of our body. He said you can start to have significant healing within just a week of being gluten free. So it is definitely important to do a gluten challenge before an endoscopy to have a definitive diagnosis that way.

The one benefit of getting an official diagnosis (which can only be done by biopsy from the endoscopy) is that you know that malabsorption and other complications may be more likely for you (as opposed to someone with an intolerance or other condition that's not Celiac). What I've learned very recently is that the effects of trace exposure on a person with Celiac can be very different from the reaction someone with an intolerance or allergy might have (usually less internally damaging, albeit still miserable). I say do it if you could tolerate gluten for a few weeks.

[tarnalberry]

Because doctors don't like to believe subjective evidence provided by patients. They much prefer "repeatable", "objective" tests that someone else does and reports the results. At least for a lot of things, they do.

[scarlett77]

My doctor told me the small intestine (the site of the damage in Celiac) is one of the fastest-healing parts of our body. He said you can start to have significant healing within just a week of being gluten free. So it is definitely important to do a gluten challenge before an endoscopy to have a definitive diagnosis that way.

The one benefit of getting an official diagnosis (which can only be done by biopsy from the endoscopy) is that you know that malabsorption and other complications may be more likely for you (as opposed to someone with an intolerance or other condition that's not Celiac). What I've learned very recently is that the effects of trace exposure on a person with Celiac can be very different from the reaction someone with an intolerance or allergy might have (usually less internally damaging, albeit still miserable). I say do it if you could tolerate gluten for a few weeks.

Thank you for the information. I guess I just assumed that since people generally say it could take up to 6 months to heal that 1 month would still show damage. Really my main question was about why an endoscopy wasn't done as soon as the blood tests were done. But now that I think about it, maybe OP went ahead and put themselves on a gluten-free diet before getting the blood results? In any case, I'm not sure that I would pursue an endoscopy AFTER going gluten free unless it was for a darn good reason. And it doesn't sound like there is any good reason for OP to do it.

[ravenwoodglass]

A month challenge if you have been gluten free for long enough to heal is not a long enough challenge. The challenge should be at least 2 months. If you are doing better gluten free I would skip the challenge. If you are still having issues then perhaps agree to the endo only to look and see if you have other problems.

[srall]

I am one who opted not to do any further testing after a negative blood test. I'd been gluten free for six weeks, ended up in the allergist office after a severe glutening (not really understanding the difference between allergies and auto immune diseases at that point). She suggested that I go back on gluten for 8 weeks to get a positive test. Um...excuse me I just spent two weeks in bed in severe pain...and I too am a mom with a life. No, I'm good. I don't know what purpose it would serve me to have the diagnosis so I'm okay being self diagnosed. I've had enough accidents along the way to understand that this is very real and not in my head.

[Monklady123]

Thanks everyone. Didn't mean to post and run but had to do the after-school driving thing. Now I'm in my twice-weekly hangout, Starbucks, while dd is at dance class. I get lots of work done with my chai tea and laptop here in my "office."

Anyway...yes, I was suspicious of wheat before I went to the doctor (not knowing about gluten). I noticed how awful I would feel after my nice big daily bowl of bran cereal, with wheat germ sprinkled on it (oy!) -- so I stopped eating it and immediately felt better. Although not great of course, since I was still eating bread. But by the time I went to the doctor -- my regular internist -- I had really cut down on gluten foods, not understanding about the tests. My blood work was "inconclusive but probable" whatever the heck that means. I was getting ready to go on vacation so I just put myself on a gluten-free diet. I felt SO much better!

By the time I finally got an appointment with the gastro doctor (you know how long it can be sometimes) I'd been gluten-free for at least a month. I felt like a TOTALLY NEW PERSON (woot!) lol... I told her all that but she said I should still have the endoscopy.

But I guess bottom line is that I don't care if I don't have a conclusive "Celiac" diagnosis. I know that when I eat gluten I feel terrible. When I don't I feel great. That's enough for me. So I'm glad to hear others say that you didn't have it, or that you agree with me when I say how impossible it would be to eat gluten for a month! And one of you said that even a month isn't long enough, so what if I went ahead and ate it for a month, which is what my doctor said to do, and then had the test and it was also "inconclusive" because I really should have been eating gluten for two months?!

No, I've decided. No endoscopy.

A friend of mine said that maybe the doctors want to be sure "it's not all in our heads." But you know what? Before this all started I LOVED baked goods.... brownies, cookies, donuts... heck, I live in the next town over from a Krispy Kreme bakery. But now when I'm faced with a bunch of all that -- like at a buffet or potluck -- I look at them and am NOT tempted to take even one crumb. My stomach starts to hurt just thinking about it. That's how I know it's not "all in my head."

Now, no need to mention my goddess, Betty Crocker, and her wonderful gluten-free cake and cookie mixes.

[cassP]

what were the numbers on your blood tests???

IF you dont need the "official" diagnosis/gold standard biopsy to be 100% motivated & 100% on the gluten free diet- then skip it. the challenge is a real pain in the A, and i only did a 2 week challenge- thank God i didnt do the endo- because the 2 week challenge my GI put me on may not have been enough.

by the end of the 2 weeks- i was DONE DONE DONE-

if you have 150$ to spare- the genetic tests can be interesting and possibly a piece to the puzzle- but they're not diagnostic- they just show you your predisposition

[lynnelise]

I don't blame you for skipping the endoscopy. I had one last year to look for an ulcer and though they noted that I had extreme inflammation in my small intestines they didn't biopsy it! My new doctor has suggested I may want to pursue getting another but I have been gluten free for 11 months now, get very sick from any CC, and don't want to shell out another $800 bucks after insurance! Plus I can't help feeling that they should have biopsied the first time given the inflammation!

As long as you are secure without the diagnoses and won't cheat then I think it's unjust torture!

[ShirleyGFD]

When I first self-diagnosed (a couple months ago), i didn't care if I got an official diagnosis or not. Later (a couple weeks ago), I met with a nutritionist who stressed that getting the diagnosis was really important in regards to follow up care. In other words, I guess, some insurance or doctors might deny certain tests without the dx. I just met with a (really good) gasteroenterologist for the first time on Thursday, and he's not making me go back on gluten because he's going to give me the DNA test. he's going to do the iga tests, too, but he's less concerned with those knowing I've been gluten-free for three months (other than a couple of accidents, and I'm eating some oat muesli that wasn't made in a dedicated facility for breakfast every morning until I get the tests in case that helps). He stressed that there are two schools of thought on our elevated cancer risk: one is that when we go gluten-free, our risk goes back down to that of non-celiac people, the other camp isn't so sure the risk goes down. He is in that camp, and he treated the intestinal cancer risk (which I had shoved to the back of my mind) very seriously, hence the need for follow-up care. I imagine if I get a positive DNA test (and he's pretty convinced I will, and I fit the classic N. European profile) then he'll probably want cancer screening next. I guess the general idea here is that I don't want to have symptoms of stomach cancer by the time anyone will screen me for it or when the insurance will pay for the screening without the dx. The cancer risk seems to be a bit unknown, and certainly any of us, with or without this disease, can get all kinds of cancers at any time, so how important a positive dx in relation to that risk is yours to determine.

All of that said, I would try and look around for another doc. If she's not going to give you a positive dx when clearly you have evidence of a positive dx and she's ending you to a test after the window of opportunity has closed, then she doesn't sound like a very good doctor. I would call around to other docs and ask how they approach the dx.