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Is Endoscopy Needed For My 5 Year Old Daughter?
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My daughter complains of stomach pains, mostly at night. Sometimes she throws up and sometimes she doesn't. Celiac does not run in our family.  My ped doctor ran blood work on ther for every food allergy and celiac comprehensive.  Here are her numbers, Deamidated Gliadin Abs IgG= 69, tTF IGA= 26, Endomysial Antiboday IgA says Positive Abnormal.  Does this mean celiac? She was negative for every ohter food allergy including wheat.  My Ped GI is suggesting the endoscopy but he is 90% sure she has celiac.  I am not sure I want to do the endoscopy.  She has no oher symptoms other than the stomach ache which keeps us up for hours at night and sometimes she throws up. I am happy to just go straight to the gluten free diet. Any information woudl be great.

Thanks

Theresa

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One positive test is caused by celiac disease about 95% of the time. Three positive tests is a sure thing - she has celiac disease.  :(  This report has more info on the blood tests on pages 10-12, and info on the endoscopy from pages 7-10:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

The endoscopy is helpful for a few reasons: 1. It gives the doctors a chance to look for other problems.  2. it provides a baseline to know where you are starting from in the rare case that her healing is slow or non-existent.   3. It makes it easier (for some) to follow a strict gluten-free diet.  4.  Some doctors won't give a diagnosis without one, and it may be needed for future (school) accommodations.

 

That all being said, I skipped the endoscopy when I had two positive tests. I knew that damaged parts can be missed in biopsies which can make some people doubt the diagnosis and make it harder to stay gluten-free. My symptoms did improve on the gluten-free diet so I'm confident I did the right thing.

 

It is a personal choice. Do what works best for your family.

 

Welcome to the board.  :)

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We skipped the endoscopy because my daughter was too sick to have it done at 15 months old.  Positive blood panel and 2 Celiac genes.

 

Then when she was 6, the endoscopy was done to diagnose Eosinophilic Esophagitis.  Unfortunately Celiac and EE are related and you have just stated 2 symptoms of EE along with Celiac.  Trouble sleeping and vomiting (this is more common for young Celiac patients and you didn't say the age of your child.)

 

I would schedule the endoscopy.  Better to find out exactly what you are dealing with.

 

There was also a poster that had major surgery done from findings during his Celiac diagnoses.

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My daughter complains of stomach pains, mostly at night. Sometimes she throws up and sometimes she doesn't. Celiac does not run in our family.  My ped doctor ran blood work on ther for every food allergy and celiac comprehensive.  Here are her numbers, Deamidated Gliadin Abs IgG= 69, tTF IGA= 26, Endomysial Antiboday IgA says Positive Abnormal.  Does this mean celiac? She was negative for every ohter food allergy including wheat.  My Ped GI is suggesting the endoscopy but he is 90% sure she has celiac.  I am not sure I want to do the endoscopy.  She has no oher symptoms other than the stomach ache which keeps us up for hours at night and sometimes she throws up. I am happy to just go straight to the gluten free diet. Any information woudl be great.

Thanks

Theresa

 Do the endoscopy now, before she goes gluten-free.  She will need this for a "gold standard" diagnosis.  This is very important for her long term adherence to the diet and so other people believe you and take you seriously.  It may not be a big deal today if you have total control over what she is exposed to, but she will be out in the world.  Other people will treat it as a diet fad, instead of a serious disease.  This will cause her damage.  You will need the diagnosis for a 504 plan at school, so they can buy gluten-free art supplies and make other accommodations.  You will need the diagnosis, 90% sure leaves room for questions down the road and makes it super hard to be 100% vigilant about cross contamination FOR LIFE.  I can't express enough how how easy it is to cut corners when you are only 90% sure. Something in the head says, well, i don't know for sure, so i guess i can let it slide.  You will need the diagnosis so you have the confidence to always advocate on her behalf and so that she will for herself.  You don't want her to become an adolescent and think mom was just being overprotective, paranoid, brush off what YOU say (rebel).  Its easier to follow doctors orders.    You will face family and friends who will brush your requests off without an official medical diagnosis by a doctor.  This is a difficult path.  The endo is not a big deal.  You LO will go to sleep and it will be done in a few minutes.

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Thanks so much for the replies.

I see what  you are saying about needing it for school and making it easier to understand that we hve to go 100% gluten-free.  I am even questioning it in my mind if it isn’t Celiac then what is it? So I know I should just go for the endo so we know exactly what we are dealing with.   I just worry about the whole procedure itself.   We are meeting with her GI tomorrow morning, he will go over her labs with us and go over the procedure.

 

I was told to not go gluten-free just yet until we have the test done but we are exhausted and have to get some sleep so I have been trying to make steak or chicken for dinner with broc, cucumber and either potato or rice.  Last night she wanted meatballs and pasta so I did make the gluten-free rice pasta which was delicious by the way. The whole family had it and loved it.  Not that it helped. My daughter and I were still up for hours because her tummy hurt. The strange thing is that the majority of her symptoms, is that her tummy hurts but no diarrhea and she only throws up if she had regular pasta.  I do notice she is a little itchy too, some dry skin.

 

She will be in full day Kindergarten in September. Right now she is in pre school half day.  So I know the right thing to do is to get the 100% diagnosis so that we can move on and do what we need to do.  I am just having a hard time agreeing to the endo.  How do the kids feel after that get this? I know it is a day procedure but not sure what to expect after.

 

When you mention the school may need to order gluten-free art supplies, what do you mean by that?  It is because it can also cause skin irritation?

 

The other thing is this does not run in our families. I am Greek and my husband is Italian. I know my husband’s side has lactose intolerance or allergy not sure if that could be how my daughter may have celiac.

 

Thanks again.

Theresa

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Gluten free art supplies would be for stuff like playdough. As far as science knows, gluten can not pass through the skin, nor does it cause skin irritation. The gluten-free supplies would be in case she licks her fingers after using  playdough. Stuff like that.

 

Celiac doesn't need to run in the family but I would be willing to bet money that there is a history of autoimmune diseases somewhere, which is all you need. Any hypothyroidism, rheumatoid arthritis, type 1 diabetes, raynauds, lupus? If so, that's probably where it's coming from.  Your heritage doesn't have much to do with the likelihood of getting celiac disease, although it's not uncommon in Italy; I don't know of the prevalence in Greece.... And lactose intolerance can be a sign of celiac disease as the villi are what make lactase to digest lactose, and the intestinal villi is usually damaged in celiacs.

 

As for how she is after the endoscopy, I have heard that it's a pretty simple and painless procedure but that a popsicle would be welcomed afterwards to sooth an irritated throat. Good luck!

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Well we scheduled the endoscopy for next week. I am nervouse about it but I do think it woudl be best to have 100% diagnosis.  The GI doctor is 95% sure based on her blood work that she does have celiac.  He will also give me name of a nutritionist as well.  Hopefully this is the right move.

 

Thanks for the replies.  Appreciate it.

Theresa

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My 5yr old daughter had the endoscopy (along w/some other GI procedures) and did great! The hardest part was watching her be put under anesthesia & then having to wait for it to be done. She woke up ok and had some raspiness for an hour or so.

Sorry I don't have any feedback on your other questions, but just thought I'd ease your mind about the endoscopy.

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My 5yr old daughter had the endoscopy (along w/some other GI procedures) and did great! The hardest part was watching her be put under anesthesia & then having to wait for it to be done. She woke up ok and had some raspiness for an hour or so.

Sorry I don't have any feedback on your other questions, but just thought I'd ease your mind about the endoscopy.

Thank you so much for reaching out.  I do appreciate hearing fromt those that had a good endoscopy experience. I just wish the test was over and we were moving along with the gluten-free diet.  But a few more days to go.  Ugh.  My daughter is having the biospy done as well did yours? I asked if itsn't celiac will he be able to see what else it is? The nurse said he can check for reflux disease as well and lactose also.  Meahwhile I have been giving her more gluten-free food just so we can get some rest at night, she is doing much better and we've had no trouble sleeping the last 3 or 4 nights.  I made Betty Crocker gluten-free brownies for her Valentine party at pre school,, they were actually very good.  Not sure we've found a good gluten-free roll for burgers.  I found the Udi's bread to be good and she likes it but the rolls I got one night were too rice gooey.  Something strange about them. I forget the brand I tried. Anyhow thanks for the response.

Theresa

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We went ahead and scoped the two oldest kids.  I wanted to know what we were starting with - in case there was serious damage.  Both came back negative from the biopsy, but the oldest was still DX.

 

Here's what I wrote on another board about our experiences:

 

Two of my kids had an endoscopy with biopsy last month and they had completely different experiences. Both took place on the same day - back-to-back appointments.

7 y/o girl - She took the IV while fully awake so she had a lot less anesthesia and came out great. Woke within ten minutes of being wheeled back in the room. Groggy for a handful of minutes until she ate a snack and had a little drink. She was fine after. They told me to keep her out of school for the rest of the day since you're not supposed to run or balance during the remainder of the day. She totally could have gone to school!

3 y/o boy - He wasn't nervous, but they gave him a kid valium (not sure what was the RX) about 30 minutes before going back. Then they had to gas him to get the IV. He slept for 45 minutes (would have slept more, but they helped wake him) and was just cuddly. I was promised a 4-6 hour nap (he normally naps 2-3 hours) - he didn't nap!! He was WOUND up for the rest of the day, but super cranky since he was tired.

If I had to do it again I would have gone against the rules and given both kids clear liquids that morning. Their last drop of food or drink was dinner the night before - 6p...and then they couldn't eat a snack until they woke up - 10-11a. They were starving! The prep call person told me NPO, but the surgery person told me that is simply NOT true for little kids and they can have clears.

eta: The GI told me that it can be VERY difficult to get the endoscope very far down. In 99.5% of her patients (she only does pediatrics) she can only get less than 6" down. For my older kid she got down *really* far and took a bunch of biopsies. Her only reasoning is that this particular child is very tall and thin so the endoscope just slid on down.

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Hi Theresa,

My DS had his endoscopy last month and got a confirmed diagnostic almost 2 weeks ago now. It went very quickly. The procedure itself( not counting, anesthesia, waking up period) lasted 20 min and he was not in pain at all afterwards. To us it was worth it because now everyone is enforcing it at school in particular.

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For the school to comply with 504 accommodations you don't need proof via biopsy.  The only requirement is DX by physician.  My kids' GI doesn't require a positive biopsy to DX.

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Hi all,

 

So my daugher had the endoscopy yesterday.  I have to say she was so brave and did so much better than me. I felt like I was a wreck!  Anyhow, she did very well with letting them put the IV in with no drink before.  I think that was much better bc she had less medicine and woke up pretty good. 

The doctor came out and told us everything looked normal. He did not see any scaling so now we have to wait for biopsy results. He should have them tomorrow.  Her blood test look like this: tTG IgA= 26 and the Endomysial Antibody IgA said Positive Abnormal.  The Deamidated Gliadin Abs IgG=69.  Does it still sound like she has celiac since he didn't see any scaling? Or can the biopsy still come back positive?

 

Thanks

Theresa

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We went ahead and scoped the two oldest kids.  I wanted to know what we were starting with - in case there was serious damage.  Both came back negative from the biopsy, but the oldest was still DX.

 

Here's what I wrote on another board about our experiences:

Thanks so much.  My daugher also went right for the IV with no other prep drink before hand. I agree if you can go that way it is better.  Thanks so much.

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The EMA IgA is usually only positive in more advanced cases of celiac disease. To have a positive EMA, tTG and DGp test is a sure thing.... I bet they find damage on the biopsy - damage s usually not visible during the procedure.

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We got the biopsy results back yesterday and my daughter is positive for celiac disease. We now started the 100% gluten-free diet. I am just curious how soon after doing that will her tummy feel better? Last night at bedtime she complained of tummy pain.  She didn't get sick or anything. She was just a little uncomfortable until she got to sleep.

 

My doctor gave me the name of a dietician so I have a call into her as well. Hopeing she can answer my questions and give me some recipes and local restaurants that serve gluten-free food.

 

I am releived that we know 100% for sure that is what she has. I think if I just went with the doctors thought that she was 95%, I would have been second guessing and possibly sneaking in regular food.  Def feel relief that we know now.

 

Thanks so much for the responses on here.

 

Theresa

 

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I'm glad you have your diagnoses!  Everyone has their own healing time.  In my experience kids heal up pretty quick. :)

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She'll take some time to start feeling better and it's awesome when you look at the calendar and think "Hmm...when was the last time I heard about her upset tummy?" and can't remember.

 

I also met with a dietician, but it wasn't a good use of my time.  She didn't live this celiac so she had the book knowledge and some personal anecdotes - not the reality of changes.  Finding others in my community that had kids with celiac and/or gluten intolerance was way more beneficial.  Then we could all talk about the specifics of our local community.

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Glad you know for sure.  :)

 

It can take days to weeks for stomach issues to improve. The unlucky few take months to years. It really varies between people. Do be aware though that some celiacs go through withdrawal in the first few days to weeks of the gluten-free diet. Some will feel more tired, cranky, sore and headachey. It can get worse before it gets better, but it almost always gets much better in the end.

 

Best wishes.

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As to how long it took my DD to start feeling better: She is 4, so I sometimes have to guess what is going on inside her head. She didn't have major GI issues prior to diagnosis, and we only caught the diagnosis through routine celiac screening because she has another autoimmune disease (type 1 diabetes).

 

However, for months before diagnosis, she occasionally mentioned "tummy aches" and she had basically no appetite. It was a nightly pitched battle to get her to eat anything at all for dinner. I think that within a week of diagnosis and going gluten-free, she was back to eating normal amounts of food, which is my best barometer for when she started feeling better. Actually, these days she's not just eating normal amounts of food, she is eating HUGE amounts of food . :) It has been so awesome to see, and it has made all the hard work and expense of the gluten-free diet seem totally worth it.

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Always have gluten free "treats" on hand.  It is better to let your child make a decision about gluten free substitutes.  ;) (At least they have some control over the gluten free diet they must follow forever.)

 

You will be amazed at all the treats and snacks you children are offered, and how much time is wasted eating at school. :rolleyes:

 

My kids were too young to really put into words how much better they felt.  They just starting looking better and good energy kept them going longer, and temper tantrums were basically non existent. :)

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We noticed changes right away  - especially in mood and behavior - and then, over time, other things improved that we didn't even notice were problems.  Increased appetite, better sleep, more energy, etc.

 

He shot up three inches and his hair got thick and curly.  Weird.  He was diagnosed at age 5.

 

I was so stressed in the first few weeks, trying to figure out what to cook and getting my kitchen gluten free.  We had tacos 3 times for dinner in the first week.  Turns out, most of our favorite family recipes were easy to make gluten free.

 

It gets easier.  We are three years gluten-free and now it is like second nature.  The whole family is healthier too. 

 

Cara

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I'm glad you have your diagnoses!  Everyone has their own healing time.  In my experience kids heal up pretty quick. :)

Thanks so much.  She is still complaining of tummy ache at bedtime this week, all except one night.  I guess it will take some time.  Any good brands for bread?  My daughter loves grilled cheese sandwiches but I haven't found a gluten-free bread that she likes everytime I give to her.

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We noticed changes right away  - especially in mood and behavior - and then, over time, other things improved that we didn't even notice were problems.  Increased appetite, better sleep, more energy, etc.

 

He shot up three inches and his hair got thick and curly.  Weird.  He was diagnosed at age 5.

 

I was so stressed in the first few weeks, trying to figure out what to cook and getting my kitchen gluten free.  We had tacos 3 times for dinner in the first week.  Turns out, most of our favorite family recipes were easy to make gluten free.

 

It gets easier.  We are three years gluten-free and now it is like second nature.  The whole family is healthier too. 

 

Cara

Thanks Cara. Please let me know of any receipes your family likes.  Can you still make a pan of baked ziti or lasagna? I haven't see lasagna pasta gluten-free anywhere.  Any other brands of cookies your family likes? I made gluten-free brownies for her valentines party at school.  Thanks so much for the input.

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Always have gluten free "treats" on hand.  It is better to let your child make a decision about gluten free substitutes.  ;) (At least they have some control over the gluten free diet they must follow forever.)

 

You will be amazed at all the treats and snacks you children are offered, and how much time is wasted eating at school. :rolleyes:

 

My kids were too young to really put into words how much better they felt.  They just starting looking better and good energy kept them going longer, and temper tantrums were basically non existent. :)

Thanks so much.  How do you  handle play dates and kids birthday parites? Do you tell the mom your child has celiac and you will send your own snacks?  I also worry about going away on vacation? I saw Disney has a lot of gluten-free choices but how do you handle that? I am guessing just research hotels and restaurants near where we are going.  Thanks so much.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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