Biopsy Or Enterolab For My Baby?

[azmom3]

Initially, I thought a biopsy was my only choice. But it seems that a lot of people are recommending Enterolab or just going gluten-free and seeing how you feel. My son is 22 months. I'm one of those people that would always wonder if I didn't know for sure, especially since it's for my child and not me, so I think the going gluten-free and see how things improve would not work as I couldn't see putting him back on gluten to have a test done down the road.

Also, (this could be a new topic in itself).....I know I probably shouldn't worry about it, but I am concerned on how seriously my family would take things if he was diagnosed by me and not his doctor. Unfortunately, the timing of my son getting sick was very poor....around the same time as my father getting diagnosed with brain cancer. Everybody's attention, including mine, has been on our dad (and rightly so); however, there have been a few times when I said I couldn't help that day because the baby was too sick and my sisters made me feel like I didn't care about him and they weren't at all understanding of my situation of having a sick child to care for, too. Both situations have been very stressful and having to balance the two has been difficult enough without having to worry about them thinking I'm just making it up or trying to get attention or downplaying the seriousness of it.

Ok, back to the other stuff...I don't want to do a biopsy if I don't have to or should I not be so worried? Also, I've read some stuff about the insurance side of things...pre-existing condition? Is this really going to be a problem down the road if a doctor says he has celiac? We already have positive bloodwork from a doctor, so is it already too late anyways? What route would you recommend? Any help would be appreciated based on your own research, experiences, etc. This is still all so new to me that I'm not sure what questions to even ask. HELP ME, PLEASE!

[AndreaB]

Biopsies are hit and miss. If you decide to do the biopsy and it is negative, then what? Will you keep your son on a gluten filled diet or still or have him go gluten free. Would the family think that the gluten free diet wasn't necessary with a negative biopsy. I realize you still have the question of whether they would accept enterolab too. I recommend enterolab since they can catch the intolerance much sooner. Of course you said you already have the positive bloodwork. Enterolab can tell you what the intestinal IgA is, ttg, malabsorption and genes if you get the whole gluten panel. They were including dairy at no charge back in May. Enterolab is what told us we had a problem with gluten. Our numbers are low enough that I don't think they would have registered in the blood yet. I asked my doctor about testing and she was willing to test me for celiac but I had already been very gluten light for about 1 1/2 months. I cancelled that appointment and went with enterolab. I did email her the results but haven't heard back as far as what she thought about them. I don't know about insurance personally as I didn't go that route. Some people have had a lot of problems, but I don't know if everyone has. I'm sorry, I'm really not being much help.

[eKatherine]

Although many doctors will only give a celiac diagnosis from a positive biopsy, the only thing that the biopsy can tell you is whether he has intestinal villi atrophy, only one of a slew of symptoms that a celiac may have, and one which many do not develop. Eating a gluten diet can result in permanent neurological complications, as many on this board will tell you. He needs to be gluten free, and you need to make it a matter-of-fact part of your lives. You don't need to make excuses or show documentation to anyone. All that matters is that the diet makes him healthier. Anyone who questions you is picking up on your uncertainty. Don't be uncertain. You know what is right.

[VydorScope]

I am not a doc, just parent that has been there. If I could do it over I would skip the bisopy.

The bisopy is a poor test that holds on more becuase of tradtion then facts. Lets run the possiblitied for you..

YOu get a postive biospy - Okay fine he has celiac disease, and has to be gluten-free for life.

You have a NON-POSTIVE bisopy (often incorrectly called negative, its never negative) - OKay now you know nothing. The next step is to try the gluten-free diet and see if symptons clear up.

So no matter what the result is, the next step gluten-free diet. You see a bisopy, and all docs agree on this, can never ever rule out celiac disease. You have very real risks durring the procedure (a freind of ours litterly almost died from internal bleeding from a endoscopy/biopsy. We are told it is"rare" but very real), plus the cost and time it takes and you get no addtional information over what a simple blood test and the diet would do.

My child was 21 months old when he had his endoscopy and if I knew what i know now I probably would not have done it.

[Sarah8793]

Hi,

I think positive blood work is enough to go with enterolab and skip the biopsy. I had positive results with EnteroLab, and 2 negative biopsies over 4 years. I am now in the process of having my children tested through EnteroLab because I feel that not only is the biopsy inconclusive but it is entirely to invasive especially for young children. EnteroLab is expensive however, and since you know you have the positive bloodwork, just putting your child on a gluten free diet and watching is another good option. Don't worry about what family thinks. You are the mother of your child and you don't have to justify your instincts. I haven't had to tell family yet about my children, but if I do I am expecting a lot of doubt from them. I figure they made decisions when their children were small and I wasn't looking over their shoulder doubtfully so what right do they have to do it to me? Good luck with whatever you decide.

Sarah

[VydorScope]

We already have positive bloodwork from a doctor

Sorry I missed that hte first read. That is all you need. He has celiac disease and most be gluten-free for life. No futher testing is needed.

[jerseyangel]

azmom3--I'm so sorry for all of the things that are going on in your life right now. I agree that based on the positive bloodwork, your baby has Celiac. The only thing to do now is to put him on the gluten-free diet. At 22 months, hopefully he will begin to improve quickly. The best thing is that by going gluten-free now, he will avoid a lot of the complications that happen over time to undiagnosed/untreated Celiacs. Best of luck with everything--if there's anything we can do to make the transition easier, let us know My best wishes to your Dad.

[Luvs to Scrap]

Both my DH and DS were diagnosed by positive blood test only. Our doctor said you would only have positive blood test if you had celiac and no matter how much damage you have the gluten free diet is still required.

Unfortunately DD test came back with not so clear results so he is sending us to another doctor.

I agree with Vincent to start the gluten-free diet and not worry about more testing unless you want enterolab to test for the other sensitivities too. Kendra

[azmom3]

Both my DH and DS were diagnosed by positive blood test only. Our doctor said you would only have positive blood test if you had celiac and no matter how much damage you have the gluten free diet is still required.

Unfortunately DD test came back with not so clear results so he is sending us to another doctor.

I agree with Vincent to start the gluten-free diet and not worry about more testing unless you want enterolab to test for the other sensitivities too. Kendra

Thanks so much! He does have a lot of allergies too and takes zyrtec and benadryl for hives...what all can enterolab tell me that bloodwork didn't?

[VydorScope]

Thanks so much! He does have a lot of allergies too and takes zyrtec and benadryl for hives...what all can enterolab tell me that bloodwork didn't?

I would say try gluten-free first for a while, as someppl do get skin reactions to gluten. Once your sure he has been gluten-free for say a month or 2 with NO CHEATING, then what ever symptons that are not improveing are likly caused by something else. Then at least you will know where you stand.

Also I would restest all food allergies/etc (other then celiac disease which will not go away) in a year or two, as some may clean up as his body as time to heal.

[azmom3]

I would say try gluten-free first for a while, as someppl do get skin reactions to gluten. Once your sure he has been gluten-free for say a month or 2 with NO CHEATING, then what ever symptons that are not improveing are likly caused by something else. Then at least you will know where you stand.

Also I would restest all food allergies/etc (other then celiac disease which will not go away) in a year or two, as some may clean up as his body as time to heal.

that's interesting about the food allergies maybe going away.....it does seem like they've gotten a little better over the past year...but maybe I'm just getting used to it. Thanks for the advice.