How often should relatives of a celiac be tested for the disease? Is it different for first or second degree relatives? Children vs. adults?

Answer from Dr. Stephen Wangen, "The Gluten Free Doctor"

It would be ideal to have all first and second degree relatives tested, because it is a genetic problem and you just don’t know until you test.

First degree relatives have a 1 in 22 chance of being celiac. And they have a much higher chance of being gluten intolerant. Second degree relatives have a 1 in 39 chance of being celiac, and again, a much higher chance of being gluten intolerant.

Dr. Wangen,
I'd also like to thank you for doing this. As the author of the Gluten Free Raleigh blog, I get this question quite often. Can you explain a little about why some folks might have a reaction to gluten containing foods one time and not another? Also, if they have a reaction every time, why would their reactions be different (i.e. one time a skin rash, another glutening resulting in a headache, and yet another in GI symptoms)? Are there studies that show switching reactions and/or reactions one time but not at all the next. I'm not talking about people who are always asymptomatic Celiacs. It can be difficult to determine if you are reacting to something that contains gluten if your reaction is not the same each time, no? For me, my reaction is usually a DH outbreak but more recently it took longer for the outbreak to come out (2 weeks) where I am used to having it much quicker (like within a day or two). Can you also discuss this oddity if you know?

Thanks,
Zach
Gluten Free Raleigh

Answer from Dr. Stephen Wangen, "The Gluten Free Doctor"

This is a great question and one of the great mysteries of food intolerances and allergies. But you are very observant in noting that the symptoms can and do switch without warning. This switch might be in intensity, or it might be to a completely different symptom.

Over the years I’ve often heard patients describe this, and I’ve pondered how and why the body will shift the inflammation around, and why different people react differently. It’s probably because health is multi-factorial, meaning that many different things impact our health. Therefore we all have different weak areas, and sometimes we are more susceptible than others. It can also probably have something to do with the form of the gluten, the quantity, and the other things that we are ingesting with it. I haven’t seen any studies on this, but I hope that someday it will be investigated.

I am on a "rotation diet" for gluten intolerance. How importatnt is it to be very strict? I live on an island and it is VERY difficult to obtain good, fresh food. Fresh doesn't last long, even in the fridge. Is it the "combination" of the foods as well as the fact that they are gluten free?

Answer from Dr. Stephen Wangen, "The Gluten Free Doctor"

I appreciate your predicament. But if you are gluten intolerant then it is important to completely avoid gluten. A rotation diet may help some, but often it doesn’t help at all. And even if it does help, you will not be truly optimizing your health until you thoroughly cut it out of your diet. Try to focus on local fresh food, such as seafood, as much as possible. It is very good for you, and many people don’t have that opportunity. So nowhere is perfect.

I was diagnosed with Celiac Disease in August 2009 and am currently training for a marathon. As a runner, I struggle to eat enough carbohydrates to keep me going. I'm worried that I am not getting enough nutrients as an active athlete. A lot of the gluten free cereals, breads, and other alternatives don't seem to have enough "good stuff" i.e. fiber, to keep me full. Do you have any advice for gluten free athletes? How can I stay healthy on a gluten free diet?

Answer from Dr. Stephen Wangen, "The Gluten Free Doctor"

Eating healthy is really the same whether or not you eat gluten. It’s primarily about getting lots of vegetables and good proteins (meats, beans and nuts). You can also eat foods such as gluten free oats that will “stick to your ribs” better, as my grandpa used to say. And I encourage you to look into Quinoa (pronounced keen-wah). It’s another excellent grain that is full of good nutrients.

Dr. Wangen,

Hello! Thanks for providing this service to us!! I have two daughters, both with Celiac. We have been able to make it through pretty well, especially as more companies pay attention to this and more resources are out there for us.

With younger daughters, we are not to concerned yet regarding possible problems in the future due to certain deficiencies, they also take multivitamins, but what should we be aware of in the future? We know of a younger boy who had enamel/calcium deficiencies and needed early dental work. We also hear of bone density problems. What proactive steps can we take now with our girls to help avoid problems in the future?

Thanks!

Answer from Dr. Stephen Wangen, "The Gluten Free Doctor"

The earlier that celiac disease is discovered the less likely that you’ll have to worry about any of these problems. Of course, if they already have something like an enamel defect then that will be apparent. But the best thing that you can do is continue to have them avoid gluten. If they are young then that should prevent other problems from developing in the future. However, it’s an interesting question that really needs more research.