Why Do Testing?

[CanadianK]

I'm genuinely curious here if there are long term negatives to NOT doing the testing on my daughter.

 

I am in the process of celiac testing for myself after my initial blood work showed Non-Celiac Gluten Intolerance and just under the cut-off for celiac. I had been eating gluten light for 2+ years. So I'm currently on the gluten challenge and then doing all the blood work, biopsies, etc. 

 

My daughter who is 6 has been on and off gluten for years since I noticed cutting it out really helped her with her painful belching, belly aches, dark circles under her eyes, and daily headaches. I haven't been consistent though and the past 2 mths she's been eating gluten with me on the challenge while I decide what to do. 

 

I wrote a post yesterday about helping her get blood work done and her anxiety around that. I'm going to assume she will do what she does at most medical appts/new experiences….stand at the door threshold with her toes just before it and become a statue that I then have to carry into the establishment with her kicking and screaming, fighting and punching me. It's like her "flight drive" is locked in gear. It's intense, and scary for both of us, and just a very hard situation. We've been going to therapy for this, etc. But she is genuinely afraid and no amount of coaxing/bribing, preparing beforehand, talking about things, etc helps her… In actuality going OFF gluten helps her with coping and she is less anxious, and more easy going. I've done a ton of reading on this and definitely think there's a correlation (SC Diet will be our go to diet after all this) ANYWAYS! Tough stuff. 

 

So - with that in mind...

 

If I know being gluten free helps her and it is very obvious to me, why would I do the invasive procedures that I know will be emotionally tough for all of us? (and yes I do consider blood work an invasive procedure)

 

Is there really a medical reason that I need to know her blood numbers?

 

If she has an endoscopy they may not find any damage yet so what information would this give me -- I don't foresee myself doing regular endoscopies anyways, the one would be enough for me. Does it really matter if she's Celiac vs. Gluten Intolerant in terms of how we deal with this? We are in Canada so diagnosis won't affect benefits, taxes, etc. And we homeschool so I don't need forms for school. 

 

Thank you all for your replies. You all have given so much and I have learned tons in the short time I've been on

 

 

[StephanieL]

If you need accommodations for school you will need a dx (and think LONG term not just elementary school think college and so on).

 

If you need special meals in the hospital, she will need a dx.

 

If you expect her to (for the most part-all kids deviate at some time when they test limits) maintain a gluten-free LIFE, long term, many people need that dx which may not seem like an issue now but could be when she's older. 

 

It's also much easier to get the dx while on full gluten for a fairly good amount of time so there is less of a chance it is "missed" because she's been off and on gluten.  Also, they will check blood occasionally to be sure the gluten-free diet is being maintained so there does need to be some baseline to start with.  Same with the endoscopy if you need to go that route eventually.

[1desperateladysaved]

Fellow Homeschooler,  Is your daughter totally convinced she should not eat gluten?  Will she stay convinced for life?  Are any family members unconvinced that play a key role in family life?  I would think if you and your family members are totally convinced you would not have to test.  However, if you ever decided to put her in school or hospital it could be an issue.  I also think that as long as the challenge is going fair that you may as well keep going and try to get the diagnosis.  When she returns to eating gluten free keep detailed records of symptoms.  I hope you are doing this now also as problems return on gluten.  But if you aren't start now.  Do it from memory and think about it daily after that.  You may be able to use this information to help a doctor with diagnosis.  You might also consider a genetic test which can be done with cheek swabs and is very non-invasive.

 

The diet would be the same for gluten intolerance and celiac, so I see what you mean about the testing not being important for that decision.  For the most part my family avoided doctors after my 4th child was born, so I have not had to deal with extreme fear of medical personal. I would cuddle her and hold her hand to help her to be as brave as possible.   However, she and you need to control her to do what is right even if it does hurt.  It sounds like you are trying to do that.  It is hard to do sometimes without causing a scene.  Still I say just do what is right no matter what people think.  What times I have used doctors I was totally honest with the child.  If they would draw blood I would warn them as soon as I knew.  I would tell them it would hurt some, but that they would be okay. 

 

Did you have birthing classes?  Relaxing the body helps to cope with the pain of the process.  Ditto getting needles stuck in.  One has to relax and it will hurt less.  I know this is a good theory, but so hard to do when a needle is going towards the arm.  I sometimes have to tell the nurse to give me a second more to relax.  Perhaps you could help her practice to relax while you apply some pinching pressure?  Also have her tense it and do the same, so she can feel the difference.  If she practices relaxing the muscles perhaps it will eventually transfer to the medical situation.

 

Dee

[Mizzo]

BTW when they do the endoscopy the child is put to sleep with a mask first before inserting the IV. That helped a lot for us.  We started with my 7 yr old flailing and kicking the nurses who wanted to draw her blood to 4 yrs later her saying , ugh, not again.  it does get easier,  and in life  she will need to get blood work done at some point .

 

Dee made some wonderful points about prepping her , talk to your Dr's about it.

 

In addition to StaphanieL list  :  If you need accommodations for college you will need DX .

 

In reality you have no idea about your future , where she will be and who's care she will be under on a daily basis  and  a DX really helps  others to reinforce her needs

 

good luck  Maureen

[nvsmom]

If she can be 100% gluten-free without testing (she won't cheat or be in danger of contamination by people who don't take her diet seriously) then you can easily delay testing until she is older (and wants to eat gluten).

 

My kids don't have a diagnosis but I have celiac disease, and 2 of my 3 boys have issues with gluten.  They were given just one test, and they were negative, but I thought we would try the diet and see if it helped - it did.  We homeschool as well, and many of our friends are quite mindful of their health, so we find living gluten-free quite simple. It's a bit of a hassle for me on busy days when I wish we could pick up a pizza, but it is not difficult.

 

My boys rarely feel (or at least act) hard done by because they are gluten-free.   On days when I know there will be foods they can't have, I always bring alternatives as well as food they can share so they are not left out.

 

If they want to do a gluten challenge and test when they are older, I'll have to support them, butright now they are young enough (11 and younger) that I can control their diets with relative ease.

 

Best wishes to you.

[ryo]

i felt the same way.  in the end i am so glad we did the testing.  my daughter (6 years old) is amazing at keeping herself safe and staying away from gluten.  her school has never questioned me and has been so supportive.  our home is 100% gluten free and not one single person in our family questions her condition.  i truly believe that all of this is because i never have to wonder or question if it is Celiac.  at the start i thought the blood test were enough but as time passed i am very thankful we went through the few months of pain to get her 100% tested.  it is lifelong and i don't want a single person to doubt how serious her condition it (especially her).

 

my daughter still hates blood work more then anything in the world.  she screams and i have to hold her down.  it is not fun but part of life and thankfully it goes quickly.  

 

sending you lots of strength and you decide the right path for your family.

[BlessedMommy]

I think that generally speaking, children absolutely do need a DX and they need as bullet proof of one as possible. If my daughter tests positive on the bloodwork, I absolutely will take her to a GI and do the whole route. Children are in so many situations with caretakers in their lives that it is absolutely critical that there be no doubt of the need to avoid all crumbs FOR LIFE.

[nvsmom]

I think that generally speaking, children absolutely do need a DX and they need as bullet proof of one as possible. If my daughter tests positive on the bloodwork, I absolutely will take her to a GI and do the whole route. Children are in so many situations with caretakers in their lives that it is absolutely critical that there be no doubt of the need to avoid all crumbs FOR LIFE.

That is usually true but a homeschooled child does not have as many caretakers as other children, as a general rule.  I know with my kids, they are usually with me, or I am there when they eat, but we are a minority.

[BlessedMommy]

My kids are homeschooled too actually, but situations like being at Grandma's house or the neighbor's house were still there.