How Long On Gluten Diet To Get Accurate Blood Test?

[renoyogamom]

Hi all,

I suspect I may have celiac, based on fatigue, joint and muscle pain, some gastro symptoms, and numbness in hands when eating a gluten-containing diet. I stopped eating gluten a few months ago and discovered an improvement in all symptoms. I decided recently to get tested for gluten antibodies, and I know I need to be on a gluten containing diet to have these antibodies show up. My GP told me to eat gluten for 2-4 weeks before the test; will this be long enough? I've been eating wheat products at almost every meal (gag). I'd love to get the test done and go back off the gluten, because I feel much healthier without it, but I want to be sure I get an accurate result. It's especially important because I am the mother of two short-statured children (both off the bottom of the growth charts for age) and I suspect gluten intolerance might play a part. Our pediatrician asked me to get tested first, then if positive we will test the kids.

Anyway, how long do I need to consume gluten to get an accurate antibody reading?

Thanks!

[mushroom]

Hi all,

I suspect I may have celiac, based on fatigue, joint and muscle pain, some gastro symptoms, and numbness in hands when eating a gluten-containing diet. I stopped eating gluten a few months ago and discovered an improvement in all symptoms. I decided recently to get tested for gluten antibodies, and I know I need to be on a gluten containing diet to have these antibodies show up. My GP told me to eat gluten for 2-4 weeks before the test; will this be long enough? I've been eating wheat products at almost every meal (gag). I'd love to get the test done and go back off the gluten, because I feel much healthier without it, but I want to be sure I get an accurate result. It's especially important because I am the mother of two short-statured children (both off the bottom of the growth charts for age) and I suspect gluten intolerance might play a part. Our pediatrician asked me to get tested first, then if positive we will test the kids.

Anyway, how long do I need to consume gluten to get an accurate antibody reading?

Thanks!

The generally accepted minimum period on this forum for a gluten-filled diet prior to testing is from 6-8 weeks; some would go further and say three months. I know you will not want to hear this, but anyone who tells you differently is not particularly well informed, IMHO. There is no point in going through the suffering for a (maybe false) negative result. It is hard enough to get a positive result under normal circumstances. It does take a while for a sufficient level of antibodies to build up and if you have been off gluten for a few months you have done an awful lot of healing, so it's almost like starting over. Why not just test the children, and if they test positive there is no reason for your suffering? Just asking!

[renoyogamom]

The generally accepted minimum period on this forum for a gluten-filled diet prior to testing is from 6-8 weeks; some would go further and say three months. I know you will not want to hear this, but anyone who tells you differently is not particularly well informed, IMHO. There is no point in going through the suffering for a (maybe false) negative result. It is hard enough to get a positive result under normal circumstances. It does take a while for a sufficient level of antibodies to build up and if you have been off gluten for a few months you have done an awful lot of healing, so it's almost like starting over. Why not just test the children, and if they test positive there is no reason for your suffering? Just asking!

thanks for your thoughtful reply. I wondered about the length of time; when I initially asked to be tested, the doctor said I didn't need to be eating gluten, and I told her I did need to... she had to go look it up. So, as you say, she's not particularly informed. I trust you folks with experience more.

As for testing the kids VS testing me... I have no idea. I was just listening to my pediatrician without thinking about the logistics I guess ;-) They show few symptoms besides slow growth and very short stature, while I started being symptomatic in other ways a while ago. Since the kids have been on a gluten diet this whole time, you're right; it might expedite things! Also, I kind of wanted to get myself tested because of some pregnancy complications (hypertension, pre-eclampsia and preterm labor) and recurrent miscarriage.

[renoyogamom]

Hmmm. in another area of this forum I found another reason why it would be better to test me than to test the kids... apparently kids under 4 often get falsely negative or inconclusive blood and biopsy tests even though they may respond favorably to a gluten free diet. Also, I would hate to subject a 2 year old and a 4 year old to biopsy; better for me to hang in there with the gluten challenge. Maybe kids that age haven't had time for the auto-immune issues to build up to detectable levels. I guess I'll just stick with this diet for another month (I've been eating gluten for 2 weeks now) and see what happens. I do wish I'd never started now that I'm more informed; I suspect re-introducing gluten may have been a factor in my very recent miscarriage, but at the time I didn't know the connection and as we have already discussed my doctor is not particularly well-informed so she didn't mention any risks to eating gluten in early pregnancy. Now there's no further harm to be done except to my own sense of wellness, and I can handle another month. Now I just need to decide whether the empirical proof is even necessary, or whether I should just take ALL of us off gluten and see what happens...

[mushroom]

You did not mention your children were so young... yes, there is a problem with getting accurate testing in small children. The journey for each family is different and we all must find our own way. As you will find pointed out here in other places, there is a problem with schools if the children do not have a specific diagnosis, in getting teachers and staff to comply with your children's gluten free requirements. So while trying them on the diet is an option, it does have its downsides, all the way through meal plans in the dorms at college, everyone seems to want that piece of paper that proves that you have to eat this way (as if we would opt for it just for the heck of it ).

One other course of action is the genetic testing, which if you have celiac should be done on all your children anyway. If both you and your children carry one of the two commonly recognized celiac genes and have symptoms (and failure to thrive is definitely a symptom) then many doctors will make the diagnosis, particularly with a favorable response to the diet (i.e., your children showing a growth spurt). We already know you have a favorable response to the diet. If you did not wish to go through your doctor, genetic testing can be done through Enterolab and you can order the kit online.

You are correct that many celiacs have problems both in conceiving and carrying a child to term, and your pregnancy problems do not surprise me. I am sorry you lost your baby

I wish you the best in thinking this through and reaching a thoughtful decision.

[renoyogamom]

Thanks again for the thoughtful help and information, and kind condolences. Sorry I hadn't mentioned the ages of the kids, duh. Thanks too for the information about enterolab. That could come in handy, much appreciated!

Kim