My Blood Test Came Back Negative...now What?

[azmom3]

How accurate are the blood tests? What if I was just recently triggered....would that make a difference? Also, is there anyone out there who can explain the gene thing to me. I don't have the money for enterolab or I would do that. I need to do something that doesn't cost me any money up front. I'm eager to try the gluten-free diet, but wasn't sure if I should do any other testing first. My son tested positive and I have a lots of the symptoms...what now?

[AndreaB]

It certainly won't hurt going gluten free. Many have gone by positive dietary response only. It is highly possible that the bloodwork would be false negative. If you are at the beginnings of celiac disease then it wouldn't necessarily show in your blood yet. Try to save up for gene testing from enterolab if nothing else. They test for more genes (or recognize more genes as gluten sensitive/celiac). If you can live with not having an official diagnosis don't worry about it. Just like every other diet out there, you can eat healthy.

I didn't have the blood work done since I had been gluten light for 1 1/2 months before I mentioned it to my doctor (due to allergy testing).

[azmom3]

  AndreaB said:

It certainly won't hurt going gluten free. Many have gone by positive dietary response only. It is highly possible that the bloodwork would be false negative. If you are at the beginnings of celiac disease then it wouldn't necessarily show in your blood yet. Try to save up for gene testing from enterolab if nothing else. They test for more genes (or recognize more genes as gluten sensitive/celiac). If you can live with not having an official diagnosis don't worry about it. Just like every other diet out there, you can eat healthy.

I didn't have the blood work done since I had been gluten light for 1 1/2 months before I mentioned it to my doctor (due to allergy testing).

Thank you! Wouldn't I have to have the gene if my son tested positive? Do you know anything about this?

[daffadilly]

you can go to Enterolab.com & read about the genes, & also google it.

Basically celiac is a genetic disease. If your child has celiac or gluten intolerance then he has at least one of the genes predisposing him to that condition. That does not mean that he will get celiac or gluten intolerance. ( but in my opinion, highly likely). A lot of the time the child will actually have two genes, one from each parent, maybe a celiac gene & a gluten intolerant gene, or two of either one. In my opinion the gluten intolerance gene is worse that the celiac gene. In my family we have the gluten intolerant genes, DQ1, & symptoms in almost all of us from birth, where I think sometimes the celiac gene might not present with symptoms, I think the DQ1 gene does. Comments from any DQ1 people?

If you have two genes you pass one gene to each of your children. If you only have one gene you have a 50% chance of passing that gene to each of your children.

You can be tested for the genes at anytime in your life, they will not change. So you can be gluten-free for 10 years & then get your genes tested anytime you want to. Enterolab is the best - I think. The total cost is $168.00 for the gene test & it covers the shipping, they ship everything to you in a kit & you do a cheek swab & send it back to them in the enclosed package. If you test your son & he has two genes then you know that one came from his mother & one came from his father.

As for going on the gluten-free diet, if your child is on it you should probably do it even if you had no symptoms, as support for your child, IMO. It will certainly not hurt anyone to eat more fruits, veggies, & meat. The blood test is highly inaccurate, IMO a lot of the labs just do not know what they are doing, nor do a lot of them care. As is typical with the people that our life depends on (police, medics, firemen, teachers...) they are not the highest paid people around. This country has a drug problem, do you think that the only place those people work is the fast food places?!

Wishing you the best.

[AndreaB]

Daffadilly already said it all.

He got a gene from you and a gene from his father. The gene testing would just tell you which ones he got, or which ones you have if you get tested. If you know his you know that one of them is yours but not which one. With my two children tested so far, they both got completely different combinations (see sig), we are really curious to see which two our youngest got and will have him tested at some point.

[taz sharratt]

  azmom3 said:

How accurate are the blood tests? What if I was just recently triggered....would that make a difference? Also, is there anyone out there who can explain the gene thing to me. I don't have the money for enterolab or I would do that. I need to do something that doesn't cost me any money up front. I'm eager to try the gluten-free diet, but wasn't sure if I should do any other testing first. My son tested positive and I have a lots of the symptoms...what now?

unfortynatly blood tests arent very acurate at all i cant afford the entrelab test iether try the diet as its the best test for really knowing for yourself if gluten is the culprit.

[Guest nini]

positive response to the diet is the best indicator. The blood tests aren't sensitive enough. If it was positive then you could bank on it, but negative? Nah... With the diet, you have to be 100% no cheating and give it a good 6 months before you decide if it's helping you or not. Then if you want to challenge it by purposely eating some gluten that would be your call. (but I don't recommend it!)

[azmom3]

Thanks, everyone!

I just posted a new topic tonight....Our oldest son's test just came back today too. The dr. told me it was negative for celiac, but that his IgA number was off. Not sure what that means.....