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Time Frame From + Blood Test To Biopsy?

Brandee

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Brandee Newbie
Brandee
Posted

Hi. I am new to this forum and to Celiac's Disease. I received a call from the Pediatric Endocronologist last Friday letting me know that my 2 1/2 year old son tested positive for Celiacs. He told me that he would have to be seen by the GI dept for a biopsy. Well, the GI Dept is taking their sweet time. My son is underweight, short stature, has developmental delays, and his bone age x-ray showed the bones of a 24 mth old not the 31 mth old that he is. My son is UNHEALTHY and I want to put him on the Gluten free diet ASAP but the Dr's office says I can't until he has his biopsy. He has an appt with the GI clinic June 1st and I'm told "we'll go from there. She might want to do some other things before the biopsy first". What the hell??!! He tested positive on the blood test why not do the durn biopsy so he can begin the new lifestyle and be healthy???? I'm really getting annoyed (as if you couldn't tell lol). It's sooo bittersweet right now because I'm having to feed my son the same foods that I know are hurting him and as a Mother it's very hard to knowingly hurt your child. My vent is over and on to my question lol - Do you remember the time period that lapsed from the positive blood test to the biopsy for your child? I wonder if I'm being too impatient??

Thank you for reading my vent

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seezee Explorer
seezee
Posted

I had the same situation. I waited a while and she really started to feel icky. At first we had her tested because my nephew had it and she stayed at the same weight for a year. I called the GI dept. and said she was going to stop eating gluten biopsy or not. The nurse argued with me a bit and then put me on a list to call if there was a cancellation. Luckily, they were able to do it in two days. My sister on the other hand started the diet immediately and my nephew improved vastly. She was able to get the diagnosis based on the change in the bloodwork (levels normalized) and his improvement on the diet. If you are willing to be flexible they might be able to get you in sooner. Also, now I can see that at a children's hospital there are some desperately sick kids and the stress of waiting doesn't quite register. It's been a year and that was a really stressful time. Once you know you are feeding something that may be the cause of the illness it goes against your motherly feelings to keep doing it.

Brandee Newbie
Brandee
Posted
  • Author

I had the same situation. I waited a while and she really started to feel icky. At first we had her tested because my nephew had it and she stayed at the same weight for a year. I called the GI dept. and said she was going to stop eating gluten biopsy or not. The nurse argued with me a bit and then put me on a list to call if there was a cancellation. Luckily, they were able to do it in two days. My sister on the other hand started the diet immediately and my nephew improved vastly. She was able to get the diagnosis based on the change in the bloodwork (levels normalized) and his improvement on the diet. If you are willing to be flexible they might be able to get you in sooner. Also, now I can see that at a children's hospital there are some desperately sick kids and the stress of waiting doesn't quite register. It's been a year and that was a really stressful time. Once you know you are feeding something that may be the cause of the illness it goes against your motherly feelings to keep doing it.

Thank you for your input :) I didn't think about them being able to check his blood again to see if his levels normalized. You are right about the childrens hospital, we are going to Vanderbilt Childrens and the wait time for specialists is no sooner than 6 months. How was your daughter when she got diagnosed? Did she improve quickly once on the diet? If she was thin/short...did she have a growth spurt? I'm just anxious to get my baby boy healthy.

seezee Explorer
seezee
Posted

My daughter was ten when we found out, so it's probably different. She did start to gain weight and grow quickly after we switched her diet. We went through all the tests because the doctors thought it was important to know the extent of the damage. I think her bloodwork was so high that they diagnosed based on that. I had her scoped too. My nephew was little (around 2) and he got better really fast. My sister just started the diet the second she got the phone call that his bloodwork was positive and by the time they saw the GI doctor he was much better. The first doctor they saw tried to convince them to do a gluten challenge. She refused and switched to a doctor that specialized in celiac. They made the diagnosis based on the reaction to the diet. A lot of pediatric GI's don't know a lot about celiac so you have to watch out. If you can try to find someone who actually specializes in it.

I think the most stressful part is feeding your child something that may really be harming him and waiting.

ocdsgirl Newbie
ocdsgirl
Posted

I am in the same boat as you. My son had positive labs (his tTg was at 56, so I don't know if that's very high or not- guessing not, but maybe someone more knowledgable can correct me). This was found by a rheumatologist, and she REALLY wants him scoped. He isn't able to get in for a GI consult until June 8th! I'm praying that they schedule whatever tests they want to do promptly. I hate waiting like this. My son will be 12 in a couple of months and only weighs 59 pounds, and has no muscle tone at all. All his friends weigh 20-30 pounds more than him. He had been having problems with an arthritic foot, and now is experiencing problems with urinating- feels like has to go, but it won't "come out" or it's very intermitant. Kind of like a man with prostrste problems. Has anyone ever heard of this? His anxiety level is through the roof.

Sorry to highjack your thread! I know how you feel. It's hard feeding your child food when you know it's what's making them unhealthy, and they are in misery. Hang in there!

  • 2 weeks later...
Grace'smom Explorer
Grace'smom
Posted

Hi. I am new to this forum and to Celiac's Disease. I received a call from the Pediatric Endocronologist last Friday letting me know that my 2 1/2 year old son tested positive for Celiacs. He told me that he would have to be seen by the GI dept for a biopsy. Well, the GI Dept is taking their sweet time. My son is underweight, short stature, has developmental delays, and his bone age x-ray showed the bones of a 24 mth old not the 31 mth old that he is. My son is UNHEALTHY and I want to put him on the Gluten free diet ASAP but the Dr's office says I can't until he has his biopsy. He has an appt with the GI clinic June 1st and I'm told "we'll go from there. She might want to do some other things before the biopsy first". What the hell??!! He tested positive on the blood test why not do the durn biopsy so he can begin the new lifestyle and be healthy???? I'm really getting annoyed (as if you couldn't tell lol). It's sooo bittersweet right now because I'm having to feed my son the same foods that I know are hurting him and as a Mother it's very hard to knowingly hurt your child. My vent is over and on to my question lol - Do you remember the time period that lapsed from the positive blood test to the biopsy for your child? I wonder if I'm being too impatient??

Thank you for reading my vent

Hi there, we waited 2 wks to get a biopsy scheduled, then about one more week until the actual biopsy. This was at Children's hospital in boston. Hope this helps.

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