Is It Too Late To Eat Gluten Before My Endoscopy?

[Annabelle882]

I'm 28 yr-old female. As a child, I was anemic. I've had GI symptoms since I was 12 (including lactose intolerance). Since graduating from undergrad (summer 04), I've had very irregular periods, amenorrhea, depression, poor circulation in hands and feet, easy bruising, back and joint pain, etc etc. Finally, 2 years ago I went to a wonderful naturopath and she told me to stop eating wheat. Within weeks, I felt so much better, and within a month, I had decided to be gluten-free for life. That's two years on a gluten free diet...for the most part. A bite of a cookie here, and hidden cream of mushroom soup there, and I'm writhing in pain (but not always, which is so confusing).

As anyone reading this knows, a positive diagnosis would help. I'd be stricter with my diet. Family would be more accommodating (I'm known as a hypochondriac and every time we have a meal or travel together, I have to bring my own food because they forget). But those are things I can live with. I can become stricter with my diet and quit worrying about what other people think. One of the main reasons I want a diagnosis, though, is that my sisters and brother all experience health issues which could be related: fatigue, infertility, diarrhea, constipation, gas, anxiety, Polycystic Ovarian Syndrome, early pregnancy loss, lactose intolerance, weight loss etc etc etc! My nephew, who was conceived while my sister was on Metformin (a diabetic drug used to treat infertility in women with PCOS), has terrible GI issues, and dark circles under his eyes. His doctors have recommended celiac sprue testing. When I suggest to my other PCOS sister who has suffered miscarriage (also conceived on Metformin) that she might try a gluten free diet and see how she feels and what happens, her response is simply that she has PCOS, not gluten issues like me. Yes, I want to be validated, but less selfishly, I want my family to feel better, too! I doubt they will try a gluten free diet until it becomes certain that genetically, they might also have celiac.

I'm telling my whole story because I never have before, and it feels good. But the point of this post, the question I need to have answered is:

Is it too late to start eating gluten before my endoscopy in 5 days? ...

My gynecologist recently referred me to a gastroenterologist for Celiac testing. I went this past Tuesday and they took blood for the Celiac panel, and we also scheduled an endoscopy for this coming Tuesday. I had not even considered that I would need to eat so much wheat for so long prior to the procedure until I got on this forum today and read about the endoscopy. I've been largely gluten-free for two years now. If I start loading up on wheat today (Thursday) for the procedure on Tuesday, will there be enough damage for a diagnosis? Should I cancel the procedure? I don't want to spend the money or go through with it if not! I've eaten homemade granola (by my fiance) for breakfast for the past month and have experienced GI distress, but attributed it to the flaxseed. But now I read that oats may also be problematic. I'm hoping there might be enough damage from the oats to produce positive test results.

Thanks to anyone who reads through this whole autobiography!!! and posts an answer to my questions.

[Marc49]

While I am very new to this, from what I have read here chances are you do not have time to load up on gluten per se.

You have been basically gluten free for quite some time now, and I would not want to pay for an endoscopy either if it will not prove/disprove anything.

Have you ever been tested for the gene?

That will NOT change regardless of what you are eating.

[shopgirl]

Marc's right, you'd need to be eating a full-gluten for a few months for the endoscopy to be accurate.

I'm not sure if the oats would be enough, although it's possible.

[Judy3]

I think you are too late to do a gluten load from what I've read and experienced. My initial blood tests came back negative mostly because I was so sick that I didn't eat anything but cottage cheese and jello for several months before the test. But my doctor said he went by symptoms, what he saw in the endoscope (lots of damage) and then did the genetic test to confirm. Lots of false negatives/positives on the initial testing (don't know why they even do it)

[Annabelle882]

Thanks for your responses, y'all. That's what I was afraid of. Maybe I can persuade and help pay for one of my sisters to have the test. They both eat wheat on a daily basis.

I have not had the genetic testing. What does it involve?

Is there anyone out there who disagrees and thinks I should go ahead and give the endoscopy a try on Tuesday? I've just had a gluten-loaded lunch. FUN!

[Takala]

It's probably too late unless you've been consistently cheating all along.

I don't know why Doctors bother to schedule these tests on people who have been gluten free for a long time, (years) unless they just like to automatically get reimbursed by the insurance companies. But kuddos to your ob gyn for at least recognizing symptoms may match disease, and trying. I hope it is that they just don't know or they assumed we all cheat, I had a doc run a "blood panel test" on me a few years ago, because I was suspicious of my thyroid, and the office calls me up all cheerful and announces "good news you're perfectly normal and btw not celiac !" and I was like WTF ? pffffffffttttt this is about 4-5 years in on a gluten free diet, it just ain't happening at that point. But I did have a very few, very low antibodies, just enough to barely register anything, this time, I'm like, oh, wow, look, somewhere in the Mysts of Lab Testing Times, I must have been cross contaminated by something I ate, so I can call myself a "Just Missed It By This Much" now. Of course "this much" is still a whopper, but it was more exciting than going on a field trip and finding a fossil, I tell you.

I also don't get why people say that they'd be more compliant on the diet if they had the "official" diagnosis. But that is usually, but not always, a guy thing. Women are more likely to be celiacs or gluten intolerant, and women tend to cook, prepare, and shop for food anyway, so for guys expecting to just "be fed" or "go out to eat," this is more of a crisis.

"I can become stricter with my diet and quit worrying about what other people think."

Uh, why would you care what other people think, if the gluten free diet actually works for you ? I have several relatives who would rather be really sick all the time than to try something that could make them feel better but which might take a little self discipline, yet they know I don't eat wheat products and they know that I'm better for it. (yet if you've read my back posts, my attitude is that I always try to emphasize to newcomers that this is an EASY lifestyle in my opinion, compared to other accommodations people have to make for other illnesses. I think saying "this is really difficult" is not a way to make people feel like they can handle it.) It's frustrating, but, short of browbeating them, which I am not willing to do, or having somebody schedule an intervention for them (just kidding....) there is not much I can do other than set an example. And if they don't like it, that's just too bad !

You can always get the genetic testing and see if you have the genes which are associated with gluten intolerance or celiac, which can, for some people, make them feel more like they "belong," or have a reason for it.

[Annabelle882]

It's probably too late unless you've been consistently cheating all along.

I don't know why Doctors bother to schedule these tests on people who have been gluten free for a long time, (years) unless they just like to automatically get reimbursed by the insurance companies. But kuddos to your ob gyn for at least recognizing symptoms may match disease, and trying. I hope it is that they just don't know or they assumed we all cheat, I had a doc run a "blood panel test" on me a few years ago, because I was suspicious of my thyroid, and the office calls me up all cheerful and announces "good news you're perfectly normal and btw not celiac !" and I was like WTF ? pffffffffttttt this is about 4-5 years in on a gluten free diet, it just ain't happening at that point. But I did have a very few, very low antibodies, just enough to barely register anything, this time, I'm like, oh, wow, look, somewhere in the Mysts of Lab Testing Times, I must have been cross contaminated by something I ate, so I can call myself a "Just Missed It By This Much" now. Of course "this much" is still a whopper, but it was more exciting than going on a field trip and finding a fossil, I tell you.

I also don't get why people say that they'd be more compliant on the diet if they had the "official" diagnosis. But that is usually, but not always, a guy thing. Women are more likely to be celiacs or gluten intolerant, and women tend to cook, prepare, and shop for food anyway, so for guys expecting to just "be fed" or "go out to eat," this is more of a crisis.

Uh, why would you care what other people think, if the gluten free diet actually works for you ? I have several relatives who would rather be really sick all the time than to try something that could make them feel better but which might take a little self discipline, yet they know I don't eat wheat products and they know that I'm better for it. (yet if you've read my back posts, my attitude is that I always try to emphasize to newcomers that this is an EASY lifestyle in my opinion, compared to other accommodations people have to make for other illnesses. I think saying "this is really difficult" is not a way to make people feel like they can handle it.) It's frustrating, but, short of browbeating them, which I am not willing to do, or having somebody schedule an intervention for them (just kidding....) there is not much I can do other than set an example. And if they don't like it, that's just too bad !

You can always get the genetic testing and see if you have the genes which are associated with gluten intolerance or celiac, which can, for some people, make them feel more like they "belong," or have a reason for it.

Thanks Takala. What it really comes down to is this whole fertility thing. I'll be gluten free forever, no matter what results I get regarding celiac diagnosis (I'm a big cheerleader and tell people all the time how easy it is, because you are right, everything else about life gets better/easier when you aren't sick all the time, and because there are more and more gluten-free options every single day!). But I am not 100% clean. Probably 98%. I have a bite of wedding cake, a sip of beer, and dash of soy sauce every now and then on sushi. After being 98% for two years, I still do not have periods. I do NOT have PCOS. That's why I went to the gyno in the first place, and that's why she referred me to the gastro. I want to know: if I become 100% gluten-free, might I increase my chances of fertility? Maybe it's about having a label, belonging, etc. But I just really want to know what's going on in my body.

[SGWhiskers]

Definately cancel that endoscopy and ignore the results of the blood test you just took. There is an extremely slim chance they could be positive from your cross contamination issues, but in someone who is gluten free or gluten light, they are going to be negative. Either eat the gluten for the next 3 months and reschedule the endoscopy and blood work for then or quit the gluten and stay gluten free. Even with a diagnosis, you may have trouble convincing your family members to get testing and you may still care what other people think of your diet. Have a frank discussion with some of your sisters and find out if they would be more open to testing if you had a positive test. Remember that even if you go through with the gluten challenge and have further testing, you could still test negative (either false negative or gluten intolerant). It does not mean you can start gluten again and your family might not be as open to testing if you are "proven" negative.

I get wanting to help your family, but make sure you keep your priorities on your health.

[ravenwoodglass]

I agree with the other posters that you need to get back on gluten for a good 2 to 3 months and you may still have a false negative. Also keep in mind that there are some diagnosed celiacs that don't have the 2 genes that are most commonly the only ones tested for. You could go through expense of the gene testing and still be told that there is no way your celiac.

Although positive tests can be effective in persuading others to get tested you can't force them to do so if they are not willing. In my family it wasn't the tests that convinced them to test it was my amazing recovery.

[Annabelle882]

Definately cancel that endoscopy and ignore the results of the blood test you just took. There is an extremely slim chance they could be positive from your cross contamination issues, but in someone who is gluten free or gluten light, they are going to be negative. Either eat the gluten for the next 3 months and reschedule the endoscopy and blood work for then or quit the gluten and stay gluten free. Even with a diagnosis, you may have trouble convincing your family members to get testing and you may still care what other people think of your diet. Have a frank discussion with some of your sisters and find out if they would be more open to testing if you had a positive test. Remember that even if you go through with the gluten challenge and have further testing, you could still test negative (either false negative or gluten intolerant). It does not mean you can start gluten again and your family might not be as open to testing if you are "proven" negative.

I get wanting to help your family, but make sure you keep your priorities on your health.

Thanks for your insight and perspective. You get right to the heart of the matter. And I think you are absolutely right about my family...all of it.

[Takala]

I don't know about the fertility thing. But obviously, not cycling is not normal. You are so young.

But if you are really gluten intolerant, and you're still eating gluten, it does not help.

The older I got, the worst my cycles became. I had really bad endometriosis. Fibroids, too. Not only that, but they were short cycle intervals, so I was getting 15 or 20 of them a year, instead of once a month. And they lasted a week. And I did end up with a cystic ovaries, to boot, and never conceived. I wish I had figured this out a lot sooner. Although I don't think I would have wanted to pass any of my health problems on, it's a moot point by now.

[Annabelle882]

I don't know about the fertility thing. But obviously, not cycling is not normal. You are so young.

But if you are really gluten intolerant, and you're still eating gluten, it does not help.

The older I got, the worst my cycles became. I had really bad endometriosis. Fibroids, too. Not only that, but they were short cycle intervals, so I was getting 15 or 20 of them a year, instead of once a month. And they lasted a week. And I did end up with a cystic ovaries, to boot, and never conceived. I wish I had figured this out a lot sooner. Although I don't think I would have wanted to pass any of my health problems on, it's a moot point by now.

That's though stuff. Thanks for sharing.