Blood Test

[londonlass]

my dd is due to have her 2nd blood test on monday. The first took 20mins of her screaming and fighting she came out with holes in both arms and one wrist and they still after all that didnt get enough blood to test.(hence the need for 2nd test.) This was traumatic for me as well as her and i am really not looking forward to monday at all. Especially as i am reading that you have to be eating gluten for the blood test to show. She has been on gluten-free diet since september. I did question the pead allergist about that at her last app. His response was 'it can still show on the test.' This didnt sound very convincing to me and i am still reading that you have to be eating gluten for the test to show. Am i putting us through all this for nothing? She is 21months old.

Has anyone had a positive result while being on a gluten-free diet?

[tarnalberry]

Since September? Six months? There's nothing in the body for the immune system to react to, so it's not going to produce any antibodies for the blood test to pick up. In someone who heals quickly (and that's often the case for little kids), all intestinal damage can be healed by 6 months on the diet. So, I'm afraid the test is going to be pretty useless. If she's done much better on the diet than off, however, that is a VERY valid test in and of itself.

[Mahee34]

i was diagnosed by the blood test and i've done significantly much better on the gluten free diet than before......however, if you're on a gluten free diet and haven't had any gluten there really is no need for the blood test, because your antibody levels would be back to normal......i'm suprised the bloodtest was that traumatic to begin with, i'm sorry about that!! guess the little one doesn't like needles so much...i'd keep her on the diet and just not redo the blood test.....better all around for everyone

[ryebaby0]

My son had a tTg level that was so high, and he was so sick, that months after being gluten-free his test did, in fact come back positive (I think it was in the 30's when under 25 was negative). BUT at such a young age I would just tell the doctor you are happy being gluten-free, and don't see the need to re-test. You have that right, and if she's done much better gluten-free, that's enough for now.

If you want to go ahead and get re-tested: Call the lab, and tell them what happened before. Get her a tech with experience with frightened kids. Don't go into the draw room until they have all their stuff out, so you spend as little time as possible waiting. Let her lay down, and you can lay down with her (on the side they aren't going to use). Make sure they use a butterfly needle, and don't let the tech do that "Now, we're going to stick you" thing --- just get it done. Buy her a present, wrap it up, and unwrap it to distract her. STAY CALM and make sure you've eaten breakfast if you are a fainter! Talking to her will be almost useless, she's just scared and try to "fight or flight" her way out! You can do all this at most any lab, but you have to assert yourself to get it. We've found laying down is a godsend -- and much easier to get a clean test...

Good luck ~ you can do this!

Joanna

(mom to a son who has a blood test every two months, and has for three years now)

[Guest nini]

I personally wouldn't do the second blood test, after six months there is no reason for it...

my daughter was dx'ed on positive dietary response alone after the blood draw that was very traumatic, they didn't even do any of the celiac tests... just a food allergy screening to test for a wheat allergy...

Just keep her gluten free and tell the Dr. that she has had a positive dietary response on the gluten-free diet and you don't want her having any more tests.

[jnifred]

INSIST on a numbing cream that they put on the site where they draw the blood. DO NOT let them draw blood until it has sat on her skin for at least 15-20 minutes. It is the only way when that age and is not traumatic at all. My son had to have several tubes drawn when he was in K, they put a liberal amount of the cream on his skin, covered it with a bandage type thing and waited until it was numb, came in drew the blood and were done in 5 minutes.

Good luck.....I can't beleive a pediatric specialist wouldn't have done that to begin with.....crazy sometimes....

[londonlass]

Thanks guys. I have cancelled the blood test, at least put it off till next week. That way i have a bit of time to think. On the gluten free front i am happy that she is coeliac and that she cant have gluten. I have got that under control and she was a different child within a week of taking her off it. The problem we are having is that the allergist is conceren that it may not be just coeliac that is her problem.

Her stomach still swells up quite often, and she still gets bouts of D. As she has other food intollerances, i wasnt too woried about the D as its so easy to give her something by mistake. But he thinks stomach swelling should have gone by now. We are now in our 3rd week of D and not getting much better although there has been a little improvement. I think that must be down to gluten exposure but have no evidence. She has not had a reaction so bad since we stopped gluten in her diet 6 months ago. But now he has got me thinking if there is something else we should get it sorted out. I am just not happy to put her through testing that is inconclusive and the thought of putting her back on gluten even for a short while makes me sick to my stomach. She has come so far and i dont want her to be that ill again.

Thanks for the tips on making the tests easy, they didnt use cream or anything last time. I had to sit on a chair with wooden arms and try to hold her still. I still get flashbacks and its horrible.

[Guest nini]

she could also be reacting to dairy, many celiacs are lactose intolerant in the beginning, and even though children usually heal faster than adults, the AVERAGE time for healing is 2 years, not six months, so it is possible for her to still be in the healing stages. She could be getting hidden gluten from anything, toothpaste, soap, shampoo, PLAYDOUGH, even finger paints, vitamins, so on...

First I would ABSOLUTELY make sure there are no hidden glutens in ANYTHING that goes near her. Are you using a separate toaster for her gluten-free breads? Are you using a new collander to drain gluten-free pastas? What about non stick pans? All of these things can hold hidden gluten.

Second, I would try eliminating dairy for a while and see if that makes a difference.

You can do further allergy testing, but keep in mind, celiac is NOT an allergy and will not show up on any allergy tests. So do not doubt her celiac dx.

[mrsnj91]

We are kinda in the same boat. My daughter is on a gluten-free diet now too without being tested. We started out with a wheat free for an allergy trial and ended up gluten-free! I just went to a local support group meeting this weekend and there was a ped. GI there as a guest speaker. This is what I came up with after hearing her speak and I confirmed it with her after so that I know I got it right.....

#1 If the child has been on a full gluten diet for a long time...meaning 1,2,3yrs. for example (my daughter being little was not) then it is possible to be able to get a result still from a blood test. HOWEVER this was going by my daughter who is on a gluten-free diet for only about two months. I cannot speak for you who has been on it longer. So I would check before even bothering to do it since it has been 6 months for you.

#2 Not sure if you remember my story but none of the family has been tested and we are in the process of getting my youngest tested due to reactions to gluten. Since she was already on a gluten-free diet I didn't want to put her back on if I didn't have to. She is doing so well....here is what she said.....(Assuming no one in your family has been dxs with it....sorry I can't remember your whole story) You and your husband can go and get a Celiac Gene test done. You AND your husband has to have one or both of the Celiac genes to pass it on. So for us, this is a great stepping stone as my daughter too went through the same thing with the blood samples. I feel for you. It was aweful. And we had to go back twice and ended up not having enough still in the end.

#3 There is a stool sample, which some on here have talked about. She said you do not have to be on a gluten diet to do it. However she claims it is new and contriversal. Don't know but maybe you can look into that too.

So my husband and I are going to be tested with the Celiac Gene and panel. If we both come back with the gene then we will go further for testing for our daughter. This will eliminate the blood test and the biops etc for her. AND I won't have to put her back on gluten food. IF she comes back with the gene (or us since we are going 1st) then we will have to take the next step of having the testing done and we will consider the stool sample test 1st.

I can't remember your background and not sure if this info. helps at all but it certainly helped me!!! At least we have somewhere to being without upturning her life or going through the blood sample again...or at least for now.

Oh and BTW...we are working with an allergist right now too. You have to start somewhere. And you can have allergies and Celiac so if that is a concern I would further look into it. Our next step next month is the GI.

In regard to the tummy problems I agree with the PP....it might just be that she had contact somehow and is reacting. Hope she feels better soon.

[londonlass]

hi We went for the dreaded blood test this morning. I spoke to a lady i used to work with at my daughters dance class last night. She left our company to become a plebotomist and works at another hospital. She gave me the name of someone who works there that she says is good with kids. I took the plunge and went today. It was a completely different experience. They had a proper chair where the arm came round her so all i had to hold was the top of her arm still. The rest of her body was cradled between me and the soft padded arm. She cried a little and it was all over in a matter of seconds. Then i bust into tears because i was so grateful to her for making it such a stress free experience. She even pushed her in the queue because she said you cant make babies wait.

i am trying to look at the stool sample thing at the moment but because we are in ENGLAND it is a bit different and i am trying to find out if our docs will accept the results of a new american test. And thanks nini (is Nini short for Nancy, Thats my daughters name and we call her Nini for short.) But im way ahead of you on that one. We found out she couldnt tollerate milk at 3 months old, (casin not lactose) Egg at 14 months, Gluten at 16 months and citric acid at around 17/18 months. So she isnt eating much at all at the moment. I dont doubt the coeliac dx at all. I am absolutly positive that that is correct. My worry is that something is still not right and i dont want to deny her testing for what it is. But i hate putting her through all that and i dont just want them to do tests for every little thing that they can think of unless they have a real reason to think that that may be the problem.

That is why i was worried about the blood test, if that comes back negative (which is highly likely ) i dont want them to say its definitly not that and go off down another avenue. And i am terrified at the thought of willingly giving her gluten (how can you make you child ill on purpose). I want the results of any testing to be conclusive. So things can definitly be ruled in or out. I have made an interesting dicovery today . I didnt know there was a coeliac gene so thats my next exploration.

[Guest nini]

Nini is short for Nisla... most of my family has a hard time pronouncing my name so about 15 years ago I became "Nini"... lol...

I'm glad the second blood test went well, but you really have to be prepared that it will be a false negative because she's been off gluten. Do not let them talk you into putting her back on gluten for any testing. The celiac expert that spoke at our support group meeting said that she NEVER puts a patient back on gluten for testing if they are having positive responses to the diet.

[ryebaby0]

How wonderful to have the test go well! I agree with nini; no responsible doctor would require a gluten challenge for the purposes of re-testing (or anything else I can think of). It's barbaric and antiquated. If she has a positive response to the diet, that is plenty of "evidence" in a clinical sense. You are in charge here, not the doctor. Having said that, blood tests can be traumatic, but so is being sick, debilitated, and afraid to eat. In the end, the testing is sometimes a neccessary evil and you can learn to approach without complete dread.

You are on a journey, and you won't get her to healthy overnight, but you are travelling the right direction! "Medical time" runs slower than molasses!

good luck, hang in there

joanna

[jenvan]

londonlass-

so glad the 2nd go around was better ! as has been said here, a gluten-free diet for even a short period of time will create inaccurate test results. even gluten challenges don't always "work" when someone agrees to them. unfortunately, not everyone gets "conclusive" results via testing...but if the diet works, then stick with it. there are many here who have done just that.

[Becky6]

Yes, if it is neg please stick to the gluten-free diet! My daughter and I were both neg and we did the diet anyways. We are both so healthy now! And prior to being gluten-free we had so many ailments. I really don't care what the tests say, if I feel better on the diet that is all I need. Good luck!

[hilaryw]

Totally disagree on not having second blood test. My daughter had hers after 8 months gluten free and although numbers had gone down, she was still positive. I felt I needed to know; need to be even more careful, etc. Am upset it's not where it should be. Her iron is also low. Any ideas there? She's on a supplement; four months ago it was fine...

[ryebaby0]

Anemia can be caused by so many things, and doesn't always resolve quickly. Is she on an iron-only supplement, or a multi? Have her zinc levels been checked? And as long as the trend is downward, she may just need more time to come out negative, depending on how sick she was. I agree, though, sustained positive tests in the face of a diet you think is gluten-free certainly lets you know that you are missing something.