New To This - Some Questions

[Melissa72]

Here's a little of my backstory, and then a few questions....

I'm a 38 yr old female with a history of anemia at one point in my life and a life of feeling fatigued. I have had some times in my life that my stomach has given me trouble, but it's never been anything major, never for any long period of time. I went on the South Beach Diet in late January to try to lose about 10 pounds but also to start some healthier eating. I really got into eating lots more whole grains and was using flours I'd never eaten (barley flour, spelt flour, etc). In early March, I started having D every day. Some days were worse than others, with constant trips to the bathroom, horrible cramping, etc, but other days were much better (but still had D). Primary care dr order abdominal ultrasound (no gallstones), stool culture (all normal), and referred to GI specialist. GI dr ordered blood tests for thyroid and Celiac and a colonoscopy (no visual signs of any problems, still waiting for final biopsy results).

The GI dr called me on Friday to say that my blood test indicates Celiac (which I was sort of expecting at this point, after ruling out other things). He told me to go ahead and go gluten-free now, and I have the endoscopy on May 4th.

Ok, for some questions....

1. I have read that you shouldn't go gluten-free until after testing is done. Is that for blood tests only, or for all testing. The dr told me to go ahead and go gluten-free now, but my gut (LOL) is telling me that maybe I should wait until after the endoscopy, just to be safe. What's the best approach here?

2. After having D for six full weeks, it has suddenly gone away (without going gluten-free). I have backed off of the higher fiber, whole grain breads that I'd been eating and even ate some white bread over the last few days. Has just easing away from the whole wheat breads been enough to allow my system to start to improve? And if so, do I need to go back to eating the higher fiber/whole grains/whole wheat breads that I'd been eating to make sure that the endoscopy shows the worst case scenario?

3. If easing away from whole wheat and back to white bread over the past few days has made the D go away, is there any chance that I don't need to go gluten-free and can just stop eating the less processed wheats?

4. How likely is it that I can have a false positive blood test? I don't have any numbers (but do plan to ask for those), so I don't know any more than "your blood test showed that you have Celiac Disease."

5. I've been reading some over the weekend and hear so much about people having horrible reactions to what sounds like very small amounts of cross-contamination (ex, from a shared toaster or sharing a tub of butter). Since I've obviously lived for 38 years without anything like this, I wonder if it's common to go gluten-free and then become ultra-sensitive to the smallest exposure, or is this more common in someone who is already more sensitive to glutens?

6. Assuming I do have Celiac, will ever be times that I can slip from the gluten-free diet for a special treat? Does anyone ever go on vacation and allow themselves to eat something that they normally shouldn't? I know that there would be a reaction to it, but would it only be a short-term reaction, or can you completely inflame your system with a reaction that would last for some time with a small amount of gluten?

Thanks in advance for any answers! There's so much to try to take in, I know I have a ton to learn.

[ravenwoodglass]

1. I have read that you shouldn't go gluten-free until after testing is done. Is that for blood tests only, or for all testing. The dr told me to go ahead and go gluten-free now, but my gut (LOL) is telling me that maybe I should wait until after the endoscopy, just to be safe. What's the best approach here?

You should stay on gluten until the biopsy is done. Then the day that is done you can go gluten free.

2. do I need to go back to eating the higher fiber/whole grains/whole wheat breads that I'd been eating to make sure that the endoscopy shows the worst case scenario?

I would until that is done. We can have symptoms that come and go also.

3. If easing away from whole wheat and back to white bread over the past few days has made the D go away, is there any chance that I don't need to go gluten-free and can just stop eating the less processed wheats?

4. How likely is it that I can have a false positive blood test? I don't have any numbers (but do plan to ask for those), so I don't know any more than "your blood test showed that you have Celiac Disease."

Not likely at all. While there are lots of false negatives with testing that is not the case for the positives.

5. I've been reading some over the weekend and hear so much about people having horrible reactions to what sounds like very small amounts of cross-contamination (ex, from a shared toaster or sharing a tub of butter). Since I've obviously lived for 38 years without anything like this, I wonder if it's common to go gluten-free and then become ultra-sensitive to the smallest exposure, or is this more common in someone who is already more sensitive to glutens?

It is common for us to become more sensitive but not all do.

6. Assuming I do have Celiac, will ever be times that I can slip from the gluten-free diet for a special treat? Does anyone ever go on vacation and allow themselves to eat something that they normally shouldn't? I know that there would be a reaction to it, but would it only be a short-term reaction, or can you completely inflame your system with a reaction that would last for some time with a small amount of gluten?

Most of us find 'cheating' on the gluten free diet to be a very painful experience. It is not unusual for our reactions to be more severe and they can last a couple of weeks for some of us. Thanks in advance for any answers! There's so much to try to take in, I know I have a ton to learn.

[Melissa72]

Thanks for the answers - I think I expected all of them, although I was hoping for different answers for some of them!

Here's another question - I have two boys, ages 8 and 14. Should I have them tested for Celiac? The 14 year old has a history of ezcema - it's not bad at all right now, but when he was about 5, it was a nightmare. Can't really think of any issues that the 8 year old has that I think could be Celiac related.

If I do look into having them tested, do I just go to their pediatrician and ask for the blood test like I had done? I read something someplace about a genetic test for it - is that different from the blood test? If so, what's the better option, if I need to have them tested at all, of course.

[ravenwoodglass]

Thanks for the answers - I think I expected all of them, although I was hoping for different answers for some of them!

Here's another question - I have two boys, ages 8 and 14. Should I have them tested for Celiac? The 14 year old has a history of ezcema - it's not bad at all right now, but when he was about 5, it was a nightmare. Can't really think of any issues that the 8 year old has that I think could be Celiac related.

If I do look into having them tested, do I just go to their pediatrician and ask for the blood test like I had done? I read something someplace about a genetic test for it - is that different from the blood test? If so, what's the better option, if I need to have them tested at all, of course.

Yes your boys should be tested and so should any other first degree relatives, mother, father, brothers and sisters. Your ped can do the test.

Celiac can present in many different ways. It can impact learning and moods as well as the more typical GI issues. It can affect pretty much any organ including the brain so there may be things in your family that you wouldn't think would be gluten related but are.

Some of us make our homes gluten free zones for our own safety and then realize that gluten was affecting others in the home also.

[Whatnext?]

I know exactly how you feel. I have been in the same position lately. I had a positive blood test, but was not offered a biopsy, just told to go gluten free and do research on my own. Which I have done. I've been reading everything I can find. It seems the general consensus is to eat gluten prior to the biopsy. I had to call the doctor back and ask to be sent for a biopsy. I have a consultation on Wednesday. I initially went gluten free (for two weeks), but once I decided I wanted more testing, I began to eat gluten again.

I've had stomach aches for years, but like you, they never lasted long (no usually more than 24 hours - although pretty painful). I would get one one day and then not get one again for weeks or months. Lately I've also had constipation and bloating which has become quite annoying to say the least. While I would say I didn't notice an overwhelming improvement initially going gluten free, now that I have gone back to eating gluten, I can tell a huge difference. I had definitely improved while abstaining from gluten. Now I can't wait to get the biopsy over with (and I don't even have it scheduled).

As far as whether to have your kids checked. Yes definitely. I have five kids and will definitely have them tested. I'm not looking forward to it as my kids are between the ages of 11 and 17 and will fight any diet change tooth and nail.

[sb2178]

The genetics reflect the degree of risk your kids have for developing celiac disease. The reason for testing genetics is so that you can decide to not regularly screen any kids who are negative, or screen kids at higher risk more often. Typically, screening is recommended every three years or if any symptoms appear. But those recommendations vary.

Postive genetics do not mean they have it, only that they could.

Negative genetics mean it's very very unlikely (but not impossible) that they have or would develop it.

Hope that helps. Genetics is trickier too, because there is the question of whether you want it in your medical record.