My 3yr old daughter has been diagnosed as a"classic" Celiac case after seeing an endocrinologist and donating major amounts of blood for many tests. We will see a gastroenterologist tomorrow for consultation. Doing a biopsy seems to be the next step. I do not feel comfortable about sedation, tubes, etc. Do these doctors present this as the only way to go? I've seen a lot of discussion about EnteroLab-is that the only good alternative? I think I'm looking for the right questions to ask to feel this is justified even though I don't like it. We are in CA and have Kaiser if that helps. Thanks!
I can understand your concerns, but at the present time, an endoscopy is the only way to know for sure if your child has celiac disease. If you put her on the gluten free diet without it, then the only way you'll be able to tell if she has celiac disease is if you reintroduce gluten into her system (called a gluten challenge) which also has health risks (there are some specialists who believe that going on a gluten challenge after being gluten free can trigger another autoimmune disorder). I personally believe it's better to get an accurate diagnosis from the beginning and work from there. If she turns out not to have celiac, then you'll have ruled this out and saved her from the inconvenience (and expense) of being on a life-long restricted diet.
The endoscopy is a fairly quick and painless procedure and your little one won't be in any pain. Of course, you are the only one who can make the decision about what is right for her health. I would ask how many biopsies they plan to take (they should take about 6, no fewer) while doing the endoscopy. And, your child won't remember a thing.
If you want the 100 percent for sure diagnosis the endoscopy is the only way to go. There are risks any time you have a procedure or take a medication, but the risks are very small for this. Your child won't remember anything.
I don't see anything wrong with not doing the endoscopy/biopsy if you're not comfortable with it. Although small, the procedure is not without risk. Also, I have heard too many stories of people who had a negative biopsy and told they don't have celiac or gluten intolerance, and then tried the diet anyway and had total resolution of symptoms. We decided not to do the biopsy for our 2 yr old.
Kim, I have to disagree with your statement that the only way to know when trying the diet is to reintroduce gluten to the diet. If the child improves on a gluten free diet, and his/her intestines heal, it is likely that reintroducing gluten won't have any obvious affect immediately. I think simply improving on a gluten free diet is enough proof. It's the parent's call.
BTW if you do decide to try the diet, it can take several weeks to see a difference. It took my 2 yr old about 2 weeks before her bowels were back to "normal".. you also should cut out dairy for a while, and maybe other things (I figured out fruit juices except for white grape aggravated my dd's system). PM me if you want to talk more.
I fully understand your concern about sedation for such a small child. Some questions to ask the Gastro would be about how they sedat the child? (IV or Breathing something?) Can you be present and hold the child for sedation? Do they have a pediatric nurse who is good with putting in IV's? Also ask if they have the numbing cream. I forgot the name of it, but your pharmacist or pediatrician should know the name. If you can't find it but are interested, I will get the info from my pediatrician- they lather the kids up when sent for blood work and get no tears or screams!!!! WONDERFUL STUFF!
My daughter had two rounds of blood work for celiacs and she is negative. She did have an ear tube surgery that scared me to death, but she was a little trooper and did just fine. They let me hold her in the OR while she was put under sedation. It helped me and her deal with it.
Another thought is that if you do not have the endoscopy, your child may be rebelous as a teenager trying to fit in and fight the diagnosis since the bloodowrk is questionable at times, and there was no endoscopy, etc.
Coming from a kid who just had another biosy this is what i would say:
Do the biopsy. My mom was with me until I had fallen asleep. It doesn't hurt at all! Especially if they give you an IV. Your doctor will do the procedure and they should have a very good nurse doing the procedure. Where do you live? I live in Stonford CA so I went to a very well know hospital and it was a no problem surgery. I don't remember anything. My throat didn't even hurt afterwards.
Now if you get a negative biopsy you might want to try the diet anyway. It depends how sick your child is and if she is not very sick then it might come back negative. Make sure they take biopsies from different parts of the intestine because some parts can be damaged while others can't. I have had 3 biopsies over the years and I only remember one. i had one laast year and 2 when I was 2 or 3. Your child will probably never remember the procedure when she is older. IT is very simple and it is the best way to get a diagnosis.
my parents had to go through 2 biopsies in one year because they wanted to check up on how I was doing on the diet. Then they wanted to do a challenege biopsy to see if I actually had the disease. My parents refused. I underrstand why you wouldn't want to do this to your child but I think it is for the best in the long run. The procedure is only about 10-15 minutes and they your child will wake up and won't remember ANYTHING
Thank you all for suggestions on questions to ask. Since we had to make a 140 mile round trip the doctor arrainged to do the endoscopy today. Yes, they used a numbing cream, took biospy samples from several areas and we were able to stay in the room while they did it and watch what was going on inside on screens(he had Nemo on another screen too-it was really bugging me) Afterwards I got to hold her on the bed during recovery. As to what she will remember I don't know but I can remember back to 18 months. She does remember them giving her five stickers. I did have a hard time at the start but then became very interested by what we could see on the screen. I'm glad we can move forward now.
When they do the biopsy they often times give children medication that gives them amnesia so that they won't remember the procedure and be afraid of hospitals etc.
Every professional we spoke with on the day of the procedure let us know that this would be happening, so if you weren't told about it, maybe your child wasn't given something like that.
My son was nine, my daughter 11 when they had their biopsies, and they breezed through them. However, my boy began having full-on surgeries on his eyes when he was 14 months old--pre-op sedation, general anesthetic, post-op recovery, the whole bit, a total of four times. He doesn't remember ANY of it. And he was four years old when he had his final surgery. It was MUCH harder on us than it was on him. I learned that my attitude greatly influenced how well he was going to deal with all the strangers coming in and out of his room, the IV, etc. At your son's age, you should be able to distract him and not make a big deal out of the procedure--he has no idea what's going on, and kids his age handle the procedure remarkably well if mom and dad stay focused, calm and relaxed! It's over so fast I remember feeling silly for getting worked up about it at all!
We won't get biospy results for a few more days. Since my daughter is an obvious classic case for a child and bloodwork confirmed that, she started her new way of eating after we got home. Found a lot of good stuff at a nearby grocery, gluten free items are marked in the aisles and an employee walked me around the store and pointed out things.
A quick warning -- if your child is an obvious classic case and the bloodwork confirms that, do not doubt it if the biopsy comes back negative. Sometimes biopsies miss the damage (not problem on mine, my villi were as flat as linoleum). If you're sure she has celiac, stay gluten-free no matter what the biopsy says.
Nope, won't go back to the old diet. She also is anemic and was diagnosed with Hashimoto's thyroiditus so she has to take med. for that. I think I am having a hard time right now wondering where it all came from and wishing I had the knowledge to see it earlier. But I am happy the second doctor I took her to referred her to a specialist where we got an answer. They all say she'll look so different a few months from now and I am looking forward any positive changes.