To Test Or Not To Test

[curiousmomma]

hi all. I am new to posting to the boards but I have been lurking for a while now. seems you guys are one of the best resources for finding out what is and is not gluten free.

My almost 5 year old has been gluten free for almost 6 months now. a little of our story...

about a year ago I noticed a lump in her groin area. It concerned me so I took her to the doctor. expecting a hernia. this was thought to be the case. but nothing was definite. I was ok with that for a while but noticed it changed size etc. so I asked for some more testing. She was also having tummy aches constantly, sometimes to the point of tears, and incontinence where there had been none previously. We had an x-ray and fond her to be constipated. so badly that there was food matter in her tummy backed up because it had nowhere to go. a doctor wanted to just put her on miralax and leave it at that. I did that to clear her out but wanted more answers. She had never had bowel troubles like this before and it concerned me. all bloodwork came back ok as far as white counts and such.

after some thought and talking witha friend whose sone is gluten-free due to behavioral issues I decided to try that. it seemed the least invasive way to find out if this was her trouble. since she has been gluten-free she has not had any constipation and no more tummy troubles. It is going on 6 months now.

She still has the lump in her groin which I was hoping would go away. My hope was that it was a lymph node responding to gluten in her system and swelling as a result....grapsing at straws...I know. I will deal with that another way since it has been a year now.

as for the gluten-free though I am wondering about getting her tested or not getting her tested. everything in me thinks it is a bad idea to test her because if it comes back negative then why stay gluten-free even though I really think that has helped. but I also worry that instead of an actual intolerance she actually has celiacs and then worry about any residual damage to her small intestine if she does get gluten accidentally. Plus to be perfectly honest my husband tries but is not always as vigilant as I would like. so if she comes up negative, which I have heard can happen incorrectly, then I worry I will NEVER get him to pay attention.

any thoughts and/or experiences with testing? I appreciate any and all help here...

[SD77]

It can be a hard decision to make.

Has she had any reactions when/if she accidentally got gluten? To test her, she'll have to go back on gluten for a while, or you can try the genetic test. Also, she's probably not in school right now...you may want a formal diagnosis so the school will work with you.

An indirect approach, is to get yourself and husband tested, and either of you come back positive, then you can decide what to do next.

Good Luck!!

Shannon

[chiroptera]

You probably know this, but if you choose the traditional route of testing (ped gastro, first a blood panel, then an endoscopy to take a biopsy) they have to be eating gluten. It is very important not to go gluten free first if you chose this route. We did for our twin daughters and the doctors said we would have to put them back on gluten for 6 months, eating the equivalent of 4 slices of bread a day, in order to do the biopsy. So, if you want to do this she will have to go back to eating gluten. In our case we chose not to do that, one because of their improvement and two, because they are nine and will not even look at gluten let alone eat it. One says she feels sick to her stomach just walking down the bread aisle.

Now, you could ask a doctor to run a gene panel because that doesn't matter if someone is eating gluten or not. We did and they had one of the most prominent genes for Celiac (plus their paternal grandma is a Celiac, traditionally diagnosed about 1o years ago). This will not tell you for sure if she has Celiac but can tell you if she won't ever develop it.

Another reason we didn't put them back on gluten is, for us, we are scared of doing the biopsy anyway as for young children they put them under and there are risks, although very small in the procedure itself. Now if one of my children was not better and still sick my thought may change and I may have done it. It is such a personal opinion and realistically the test is very safe and usually well tolerated.

One thing we also did was use stool testing via Enterolab (which will open a can of worms because many people do not agree with Dr. Fine) and they came back gluten, casein and egg intolerant. In our opinion, Enterolab was great to do because there is no risk involved at all and it gave our family a sense of reassurance that we do need to be off gluten. Most insurances do not pay for the testing, but at the time we did it my husband had a job so we could do it. Plus, our med insurance wasn't that great so we had out of pocket costs anyhow. Again, a very personal decision.

I can totally see wanting to feel like you know for sure that your child cannot eat gluten. Everything was going great and we felt all empowered and all; then we had to go out of town and we took all of our own food and drink for four days. That was very hard and I had thoughts of "geez do we really need to be doing this?"

But, then reality hit me because I know what works for my kids (and me too) and that is being gluten free!

Like it or not

hope that helps

[Benshell]

My 6 year old was diagnosed with celiac via blood test, no outright gastro symptoms, just no weight gain for 6 months. We chose NOT to do the endoscopy also, due to the scaryness of the anesthesia (putting her completely out). The dr felt he would be "very surprised" not to find any damage in the endoscopy, therefore would put her on a gluten free diet. So we just skipped point A to get to point B as we would have gotten there anyway.

It's been a little over 2 weeks that she's been Gluten Free and I've noticed some changes - she doesn't have BM as much (she used to go 3 times a day), now she goes once. Very rarely complains of tummy aches or headaches anymore (used to a lot). It's been a challenge trying foods as she misses her old stuff, but I've been making a lot from scratch and very healthy (good for all of us). My only complaint is the junk food is so loaded with sugar (I guess to make up for the texture/taste) and it makes her hyper. So I limit it to one "sugar" a day (cookie, bars, etc..)

Good luck and know that there are other parents that also decided NOT to do the endoscopy and just go gluten free...as they say - the proof is in the gluten free pudding.