5 replies to this topic

[Fiona's Mom]

Hello! I'm just wondering what the benefit of being tested for celiac is. My hubs and I were going to try going gluten-free for a month to see if we feel any better but I've never talked to my doc about my idea. Its mostly for my husband who has IBS but we both also have seasonal allergies (plus asthma for me), anxiety, occasional fatigue (but hey, we've got a toddler to chase around) and I also get vertigo/dizzy spells a couple times a year. I don't think we have celiac because our symptoms are usually very manageable, but thought we may have gluten sensitivity. I've also heard that some people handle gluten much better after taking a break from it... has that happened to anyone on here? I just wonder why its not enough to go gluten-free, see how we feel, and let that be the test.

[appletree729]

I wrote a detailed post in response yesterday, but for some reason it didn't post!

 

Anyway - quick summary - especially as a parent, I have recently come to the conclusion that it *is* important to seek a diagnosis if symptoms are present.  

 

First, it's helpful if your child ever has symptoms or any medical issues that seem to perplex the doctors.  If you know *you* have celiac, you could potentially save yourself a lot of frustration in trying to figure what, if anything, is wrong with your child (personal experience here!!!)  Reason being of course that celiac has a genetic component to it and runs in families.

 

Second, it's much easier to be gluten free when you *know* you have to do it.  You'll know how careful you need to be (if you're celiac, you will even need to be careful about toasting your gluten-free bread in a toaster that is sometimes used for regular wheat bread!).  It might seem easy now to go gluten free, but there will likely be times when you begin to question if it's really necessary.  If you want to be tested at that point, you will need to go back on gluten for several weeks to several months (depending on which expert you ask) to get an accurate test done.  

 

So it's really worth at least doing the blood test right now, while gluten is still in your diet.  A blood test is easy-peasy.  Do the genetic portion as well as the celiac panel and IgA measurements.  Even if the tests don't indicate celiac, you can still go gluten free afterwards and see if it makes you feel any better.

 

The only other thing I'll add is about children - again, I'm speaking from experience when I say that it is extremely helpful to know whether one or both parents have celiac disease.  I'm seeking a diagnosis myself right now for this specific reason.  It's difficult to get a good diagnosis in children - so it helps to know whether or not celiac disease runs in the family!!!

 

And simply putting the whole family on a gluten-free diet comes with it's own problems - maybe not now, but down the road, when your child is in school, going to friend's birthday parties, play dates, etc.  It will be smart to know whether or not it truly is necessary to deny your child all the same childhood pleasures that all their friends are indulging in.  It's not really fair (in my opinion at least) to tell them they can't have a piece of birthday cake unless you really know for sure.  You'll need to make special arrangements with the school about sitting at the allergy table at lunch, about special days when they are making pumpkin bread for halloween and how your child will not be allowed to participate, etc.  And then as they get older and you have less control over what they are exposed to, they begin making their own decisions, etc.  Urgh - I know I'm rambling but the point is that it will be a lot easier if you just get a little blood test right now while you still have gluten in your diet, lol.

 

And yes, I know this was *not* the quick summary I had intended it to be, lol.

 

 

[Lock]

Here are some reasons I can think of:

 

With a positive diagnosis in your record, your doctor should follow you more closely for celiac related problems.

 

The doctors of your family members will consider a celiac diagnosis more seriously in your loved ones if you have a positive diagnosis.

 

For some it is easier to remain on a gluten free diet. For me, it is not a matter of my own kitchen, but without a positive diagnosis, I anticipate it might be much more difficult to deal with hospital cafeteria food, for example, or restaurants, or simply the family holiday dinners. I don't have faith that chefs, doctors, nurses, etc., will take your gluten restriction as seriously if you do not have a diagnosis in your record. When I imagine myself trying to explain my food restrictions to these people, being able to say I have celiac disease just seems much more authoritative than saying I'm "sensitive" to wheat. That just seems to make people think I've got onto the gluten-free fad diet bandwagon for no real reason.

 

As long as you are functional and independent, you can manage to stay gluten free. But what if you become confined to a wheelchair because of an accident? Or just age and need institutional care, or even just Meals on Wheels?  I imagine having an absolute celiac diagnosis probably makes OTHER PEOPLE more motivated  to keep your food safe, such as your family caretakers, institutional personnel and so on. That might not be an issue right now, but as you age, motivating other people more than yourself to stay gluten free may become a problem.

 

In theory, if you are non-celiac gluten sensitive, this should result in all the same care, because you can be just as sick from being glutenized, but unfortunately I don't think the world understands. I know some in my family don't. Not even some doctors understand.

[Fiona's Mom]

Thanks so much for the feedback, guys! These are some very good points you've made, especially concerning children and family genetics. Fortunately everyone in my family sees the same family practicioner and I do have lots of confidence in her... I can also contact her via email to ask her about the tests. Wondering how much of my hesitation comes from being afraid of the results! Ahhh!! But even if they are "normal" I'm still going to try gluten-free for a while. Partly its because our family has a huge addiction to everything made with wheat and it would force us to become mindful of what we eat. Thanks for listening and for your advice

[BelleVie]

I think that you have a really great attitude--seek testing and, if the results are negative, still try gluten free to see if it makes you feel better! 

[nvsmom]

When you do go gluten-free, make sure you give it many months before you decide if it's helping. For some like me, going gluten-free went like this: First feel awful for about two weeks with a headache, fatigue and grumpiness (fatigue). Next I felt great and lost weight for about two months. From months 3-6 I felt really poorly and had a lot of pain and fatigue. From six to nine months I felt average, and it is only now that I truely feel good. I still get more GI issues than most but it is so so much better.

 

so, if you are anything like me, make sure you give the gluten-free diet a good six months before you decide if it's helping. a symptom diary REALLY helped me keep it all straight.

 

Good luck!