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Cara in Boston

6 Year Old Endoscopy Tomorrow - Hope We Will Get Answers

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We have been going through the testing process since December when he tested positive on some, but not all, of the blood tests. He has very few (almost none) symptoms. The original complaint of stomach pain has been gone for several months and the horrible behavior that started at about the same time seems to finally be gone. In just the past week we have had our cheerful, funny, sweet boy back after months of tantrums, meltdowns, and just generally being unhappy. We have not changed his diet at all, but if I had, I would have attributed this change to being gluten free (and considered it a miracle.)

Can symptoms come and go like that?

He tested positive for IgG, TTG IgG and the DGP IgG but negative on all the IgA tests (and he has enough) He also has one of the genes associated with a low risk of celiac. The MD (a celiac specialist) mentioned that maybe he was in the very early stages and there is no damage yet. She mentioned staying on gluten for 6 more months and starting the testing process over again (if we find nothing tomorrow)

I think it is clear from his blood that he is at least sensitive to gluten and don't really see the wisdom of waiting around for damage. But, with his symptoms seemingly gone, my husband is not sure what the benefit of going gluten free would be . . .

Has anyone gone through something similar?

It feels like we are finally at the end of this long frustrating process but then I remind myself that the test tomorrow could be negative and then we really don't know any more than we did at the start.

I have also had positive blood tests (TTG IgA and IgA) but then a negative endoscopy so my frustration and confusion are doubled.

What are the chances of a family (who had never previously heard of celiac disease) having 2 people (50%) test positve and then not actually have it? It just seems like too big a coincidence to me. Also, my older son (all blood tests negative and no symptoms) has discolored teeth that have baffled both his pediatrician and dentist. Another coincidence?

Just keeping my fingers crossed that tomorrow we will actually get some answers.

Cara

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I am also new to the whole-celiac thing (my almost 5-year old will have his scope some time in the next few weeks), so I don't have answer to your questions.

I just wanted to wish you good luck tomorrow! Hopefully you'll get some more clarity.

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Hi Cara in Boston, I think it is 100% possible to have a gluten-intolerance that has the same symptoms of Celiac without the Villi destruction. My daughter is 2, she is gluten-intolerant, she started showing symptoms when we introduced solids. WE saw GI @ Childrens Boston too. Just as an FYI, if your sons endo come back negative don't rule out Gluten-intolerance. All of my daughters tests came back negative for Celiac (and she had them all including gene). The Non-Celiac Gluten Intolerance is a real thing. I hope your getting your answers soon.

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Thanks for the responses.

We will get the results next week but we have started him gluten free already.

We were VERY impressed with Children's Hospital. He actually had a great time (who knew a medical procedure could be so fun?) I highly recommend them.

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Glad to hear that it went well!!! Keep us posted on the results.

We just got a date for the endoscopy for my almost 5-year old.. It will be May 2nd, so it's getting closer and if you wouldn't mind sharing I would love to hear more about how it went with your child..

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I was very worried about his endoscopy because I had just had one and although it was fine, I was trying to imagine him in the room with all the equipment and being nervous.

My husband ended up taking him since my other son was home sick. He said the staff was WONDERFUL about keeping him busy and occupied while they did all the preliminary tests. They gave him a Nintendo DS to play with while waiting in bed so he was all set. He changed into pajamas and changed his stuffed animal into a hospital robe (I found one at Build-A-Bear and brought it along.) He was in a small room to start and they put him under (some kind of cherry scented gas) before they put in the IV and took him to the procedure room. By the time he woke up, he was back in his room and they were bringing him popsicles. They left the IV in (in case he needed medicine for nausea) and after about an hour, they removed it and he was able to get dressed. He got to ride out to the car in a wheel chair (which he really liked) and since they have valet parking, it was all very easy.

After I had it, I was groggy and sleepy for hours. He was awake and full of energy. Came home, had lunch and then played all afternoon like nothing happened.

The hardest part of the day was skipping breakfast. His endoscopy was 10:30 but they didn't really get started until just after 11:00. He was whining at home, but my husband said once he got there, he was so busy playing that he never mentioned being hungry.

I have a harder time trimming his fingernails than they had doing this endoscopy. You really have nothing to worry about.

Cara

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Thanks Cara! I am glad that it went so well for your son, it sounds like he went to a place that was very tuned in to kids. I really appreciate hearing his story, that helps with my own anxiety about this and it is good to be able to tell my DS positive stories

We are also going to a children's hospital, so I hope that they will be good at well. When we had our GI appt there I was impressed with how nice they were to him, so I have good hopes.

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I was very worried about his endoscopy because I had just had one and although it was fine, I was trying to imagine him in the room with all the equipment and being nervous.

My husband ended up taking him since my other son was home sick. He said the staff was WONDERFUL about keeping him busy and occupied while they did all the preliminary tests. They gave him a Nintendo DS to play with while waiting in bed so he was all set. He changed into pajamas and changed his stuffed animal into a hospital robe (I found one at Build-A-Bear and brought it along.) He was in a small room to start and they put him under (some kind of cherry scented gas) before they put in the IV and took him to the procedure room. By the time he woke up, he was back in his room and they were bringing him popsicles. They left the IV in (in case he needed medicine for nausea) and after about an hour, they removed it and he was able to get dressed. He got to ride out to the car in a wheel chair (which he really liked) and since they have valet parking, it was all very easy.

After I had it, I was groggy and sleepy for hours. He was awake and full of energy. Came home, had lunch and then played all afternoon like nothing happened.

The hardest part of the day was skipping breakfast. His endoscopy was 10:30 but they didn't really get started until just after 11:00. He was whining at home, but my husband said once he got there, he was so busy playing that he never mentioned being hungry.

I have a harder time trimming his fingernails than they had doing this endoscopy. You really have nothing to worry about.

Cara

We had very similar experience in Boston Childrens Hospital, except IV was out of her in about 15 minutes. A tiny tummy ache and little sore throat that afternoon then good as gold next day.

procedure is very fast about 45+ minutes

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Got the results today which were positive. Glad to know that since it was kind of hard justifying going gluten free when he really has no symptoms any more. He has been gluten-free for a week now and seems to be adjusting well. Time to (finally) go clean out the cabinets - I've been putting it off just in case.

Food pantry, medicine cabinet, spice rack - anything else?

Sort through pots and pans, storage containers, utensils, etc. . . .

This will really be Spring cleaning.

Cara

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I am glad you had good results with the biopsy! I just read about a Celiac who had 8 biopsies over a period of years and only the 8th finally revealed Celiac Disease. I recommend using a stool test at EnteroLab for $120. www.EnteroLab.com It was the only test that finally diagnosed me :P.

You might want to look into Dr. James Osborne's grain-free diet. About 45% of Celiacs also react to corn and slightly to rice because both of these grains have gluten in them. Traditional medicine says that Celiacs only react to the gliadin within wheat, barley and rye... but I have met MANY Celiacs who react to the gluten in all grains. So, keep this in mind if you feel like he hasn't completely improved! Best of luck!

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