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The Curse Of An Early Celiac Dx
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My daughter was diagnosed with celiac about 3 months ago. She is 5 years old and really displays none of the symptoms of Celiac.

She was tested for celiac because she has been constipated since birth and it is standard procedure at the clinic we went to to screen for celiac. That was the only reason we visited the ped GI clinic - searching for an answer for her constipation.

She has been on a gluten-free diet for 3 months now and nothing has changed. Still constipated (I say she is constipated - but really she is regular with the help of Miralax, without it she backs up/stools get hard) and we have noticed no other changes in her either....but then again there were no symtoms to notice to begin with!!!!

This makes me doubt that she even has the disease - eventhough I sit here now with her blood and biopsy test results in front of me.

We should count ourselves lucky that the damage done was minimal and real symptoms never had a chance to set in, but more often than not I feel that the dx must be wrong and I am going to cause her to be an outcast when she is an older child/teen for no reason at all!!

I feel like because it was caught by chance so early we are cursed with doubt.

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Have you tried adding some beans (as in soup type, kidney, navy, lima, etc) and some prunes to her diet? I'd start with 1/4 cup beans and one prune daily. Increase the prunes to two if it doesn't help after the first week.

And how do you get prunes into a kid who won't eat them dried?

Take a handful of pitted prunes, toss into a pan.

Add 1/2 cup water.

Simmer until the prunes are soft and mushy. Drain slightly, mash them up a little.

Cool.

Mix this into whipped cream, sweetened or unsweetened. May also be mixed with pudding.

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Believe me we've tried everything under the sun to keep her regular.

As an infant, yes prunes and karo syrup did the trick.

As a toddler it was off and on a problem that she to the med Colace for as needed.

At 5 now, she eats a pretty good variety of foods, fruits, veggies....but still needs the Miralax to keep her stools soft.

I know there is still some withholding issues in her - the minute her stool starts to get hard/large and difficult to pass she will hold it in as long as possible because she knows it will hurt to push it out.....and you can't convince her that the more she holds it in the more it will hurt.

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My daughter was diagnosed with celiac about 3 months ago. She is 5 years old and really displays none of the symptoms of Celiac.

She was tested for celiac because she has been constipated since birth and it is standard procedure at the clinic we went to to screen for celiac. That was the only reason we visited the ped GI clinic - searching for an answer for her constipation.

She has been on a gluten-free diet for 3 months now and nothing has changed. Still constipated (I say she is constipated - but really she is regular with the help of Miralax, without it she backs up/stools get hard) and we have noticed no other changes in her either....but then again there were no symtoms to notice to begin with!!!!

This makes me doubt that she even has the disease - eventhough I sit here now with her blood and biopsy test results in front of me.

We should count ourselves lucky that the damage done was minimal and real symptoms never had a chance to set in, but more often than not I feel that the dx must be wrong and I am going to cause her to be an outcast when she is an older child/teen for no reason at all!!

I feel like because it was caught by chance so early we are cursed with doubt.

It is normal to have your feelings. But the fact of it is, you are probably just in denial :( sorry. There are virtually no false positives when screening for celiac. In fact, if anything, most young children seem to be falsely negative. If she has positive blood results and a positive endoscopy, she is celiac. You will find countless stories all over this forum of parents or individuals who have the opposite problems-they could not get a positive test.

You repeated that you feel she had no symptoms, but the fact that she was/and still is constapated IS her symptom! Three months is too soon for you to expect this to be totally gone. My dd was also constipated, an atypical symptom, but bouts of constipation and diarrhea are common with many celiacs. My dd has been on the diet for 2 and a half years and still battles occasionally with the c. I talked to our dr. about this and he did say the gluten-free diet is typically lower in fiber than a "normal" diet (yet MOST "normal" people don't even get the rec daily amounts of fiber), and we have to make sure she is getting what she needs. We gave her a fiber supplement for a long time, and have slowly began to be able to wean her off of it as we are learning to cook and prepare and present her things with more natural fiber, LOTS of fruits, veggies, especially beans.

The other this I want you to know is this: SHE WILL NOT BE AN OUTCAST unless she feels like one. In order for her to accept her disease and NOT feel like/be an outcast YOU have to accept it and teach her how to adapt. Self confidence is very important. It's a very hard thing to accept/deal with as a parent, believe me I know, but you will get there in time. It has taken me a couple years. You hit the nail on the head when you said "We should count ourselves lucky that the damage done was minimal" but then you veared away when you said "real symptoms never had a chance to set in". She was constipated for five years, that is definately a symptom. I am not trying to be harsh with you, so please don't take this the wrong way. Don't doubt it, just deal with it. There is a great book by Danna Korn (sp?) for parents raising kids with celiac, I can't think of the name right now, but you'll find it easily if you search. She founded ROCK (raising our celiac kids) and is a great inspiration.

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3o% of Celiacs can present with constipation, not the horrible "D" and vomitting we complain about most.

Some Celiacs on a gluten free diet suffer from constipation. It's not uncommon and your daughter is not alone.

I know trying to get kids to drink prune juice can be awful. Sometimes you can warm and add other juices to make it a different taste.

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I'm new to celiac as my 6 yr old was just diagnosed with no symptoms too (happened to be checked by her endocrinologist). But when you mentioned she is purposely holds in her stool, it rang some bells. I had the same issue when I was a child (started around age 4 up until I was about 10). At first it was because a large/hard poop hurt to come out. My parents took me to a GI who made me have a shake everynight with mineral oil and senokot to keep me regular (they did it in a chocolate milk shake or an orange sherbert mix). It helped a little, probably would have helped more if I wasn't purposely trying to hold it in. With therapy (psychological counseling) I realized that it wasn't it just hurting, but it was a way of controlling something in my life. At such a young age, I had no control of anything in my life. My therapist advised my parents to let me do some things on my own, give me jobs to do around the house, etc... The more independant I got, the less I held in my poop.

So, just as a suggestion, try the mineral oil/senekot (but check with your dr first as I don't know if this is standard procedure anymore - this was 30 years ago). Also, maybe seek psych therapy as it worked for me, being that it was also a control issue. I know this is common with children and just helped a friend last year who had the same problem with her 5 year old.

Good luck.

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I'm not prone to constipation but I do tend to get it since going gluten-free. It happens to me when I eat grains. I have recently cut most of the grains out of my diet. I have read other posters say they get C'd when they eat dairy. It might be worth a trial to see if cutting out the dairy can help. You also could cut back on the amount of grain she eats if DF doesn't work.

Children aren't left out because of gluten. You can go into any school nurse and ask how many kids in her school have allergies. She probably has a line out of her door every day of kids who are on one kind of medication or another. You raise her as a confidant, well rounded child and she will pick those same type of friends.

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It is a hard thing to be gluten free, the first year. Lots of grieving and second guessing and sadness is okay, and part of the journey. But I wanted you to hear our story, in a nutshell:

When my son was 4, we went from his pedi. to a major med center to dx his constipation issues. They wanted to scope him. We decided against it. When he was 8, he fell ill. In the space of a few months, he was unable to eat, couldn't walk from the pain in his ankles and knees. He was eventually hospitalized for 44 days,(and missed 7 months of school) during which he was fed via IV, his gi tract was so ravaged by the undiagnosed celiac disease. Which, we know now, would have been found by that endoscopy at 4. You are blessed to have discovered it early, really you are. I understand, it doesn't always feel like it.

At 16, just last week at school a girl my son only knows by name brought birthday cake to the high school cafeteria to feed just about everyone within reach. And she produced a bag of gluten-free candy bars, and gave them to my son with a triumphant "for you -- on my birthday, everybody eats". He has been many things, but never outcast because of his health.

Hang in there

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    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
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I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. 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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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