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scaredparent

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Hi I have a 20 month old son who has had diareha since he was 3 months old. He got sick for the first time when he was 3 months old. It was right after I started him on rice cereal. When he was born he weighed 8lbs 7 lbs and at 3 mo old weighed almost 14 lbs. And all I was doing was nursing so the dr said start him on cereal so I did. Then he got sick with upper respitory stuff diahrea and throwing up. After being hopitialized and antibiotics and tubes in the ears. He got better for 2 wks. Then it started all over again. At age 6 months he only weighed 14 lbs. He had stopped growing. We started him on gamma for immune problems and no results. Finally after dealing with 1 year of diahrea and vomitting and upperrespitory problems I said I am going to a specialist. So I drove 4 hrs to a gi doctor in Kansas City MO. When we got their he said we are going to do a bunch of test. Stool samples biopsy and blood work. Every thing came back normal. We went back after 3 mo and he said he doesn't know what is going on but we could do stool samples every time he has diahrea and see if anyhting comes out of those result. Well you guessed it nothing came back wrong. I have done almost 20 stool samples and about 10 viles of blood and biopsys from the esophegus to the anus and guess what "nothing is wrong". The dr wants to know if I know what diahrea really is .hahahah. I told him that 15-18 poops a day consist of diahrea I think then I know what it was. After 6 mo of dealing with a gi dr that did me no good and son who only weighed 20 lbs at 19 months old I knew I had to do something. So I called the nurse and told her in no uncertain terms was I comeing back if something didn't change and that I was tired of change 20 diapers a day and my son looking so sick. So she told me to do a diet change and to first take him off of gluten and I did. He is now 20 months old and weighs 24 lbs and is acting like a normal child. I didn't mean to ramble but my question out of all this is a kid with a gluten intolerence does he ever out grow it and will he ever be able to have any gluten again? He know is having 1 may be 2 stools a day formed. And has energy and no more black circle under his eyes and no more distended stomache. I am very happy with his results and if we have to stay on the diet for the rest of his life we will but if we don't I don't want to. We moved when he was 11 months old and I saw some one that I hadn't seen in about 5 months and she comented on how well she was doing. So we are showing great improvements and am very happy that there is people out there who understand what we are going thru. So any comments or suggestion are appreciated. Thanks in advantce.

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Celiac.com Sponsor (A8):

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If it is celiac disease, then it will not be outgrown. It is a genetic disorder which he will have for the rest of his life. Symptoms may disappear during puberty/adolescence age, but that doesn't mean that the gluten free diet can disappear with them. He still has celiac and needs to keep eating gluten free foods.

Just be thankful it is not something that requires expensive medicines. It can be easily corrected with proper foods. I would take that over a $300 prescription any day ;) .

Not sure where you live, but there are some support groups in KC that may have folks who can point you to a more "helpful" dr. You might try contacting them to see what you can find out about a good doctor who has knowledge about celiac.

-Jessica :rolleyes:

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Celiacs do not grow out of this. If you have it you have if for life. I have heard that blood tests can come back innaccurate with children under 2. You may want to consider going to a doctor who knows a lot about celiac who will be able to tell you more about what he thinks may be going on. Also you could always try a gluten free diet and see if he has a positive reaction. Some people with celiac don't even get symptoms so even if symptoms disappear that doesn't mean someone is outgrowing it because celiac can not be outgrown. Hope you get some answers soon and if you have any questions this is the place to ask :D

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My son was 2 1/2 when he was diagnosed, and at the time I thought his only symptom was sudden weight loss and fatigue. Now, looking back, I realize that it wasn't so "sudden" and that a lot has changed. THis year he had not had NEARLY the amount of colds or wheezing that he did the past 2 winters....he's only had 2 ear infections, which is a record for him during cold season....and his personality is worlds different.

I am a little sad that your doctor simply suggested starting to eliminate foods, when there is a blood test available to test for Celiac. I am sad bc for a child it is VERY important to have the medical diagnosis, at least if you are not planning to home-school. Children with celiac disease qualify for the 504 plan at school...which basically gives them the right to an environment that won't make them sick, or at least need to be provided reasonable alternatives. And unfortunately if you've gone gluten-free, any blood tests you run will come back negative for celiac disease bc the healing has been done. I would suggest, though, that you do have an allergy screen run for wheat, barley and rye to rule out simple allergies. If he comes up negative for those, but eliminating gluten has worked, then odds are it's definitely celiac disease.

But, on the bright side, I am SOOOO happy for you that you've seen such great results. I know how I felt the first time someone commented to me about my son. And I still get all teary everytime I find something else gluten-free in the normal store!

I HIGHLY recommend that you pick up Danna Korn's book Raising Celiac Kids. I found this book so helpful that not only do I have a copy, but so does my mother, my husbands mother, and our daycare provider!

Also, www.DiscountSchoolSupply.com sells Gluten-Free playdough that is amazing. It's $20 for the tub, but there's a lot of playdough and seeing how happy it makes my little guy is well worth the price of admission as far as I'm concerned.

Bridget

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We have had a postive dietary change but our dr will not give him a diagnosis of celiac disease because all the test came back negetaive. Is there anything that we can do about that. I have had him tested for allergies and everything came back no allergies. Can we do any thing.

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You can keep him gluten-free. If it makes him feel better, that's what really matters. I know a doctor-written diagnosis might make you feel better, but trust your instincts! :-) You've seen him get better, so go with that. It leaves you room to try gluten again in the future if you're not certain, but it's a choice you'll have to make (or he will have to make) later.

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I have celiac disease that was diagnosed 7 years ago with a biopsy. We have 4 Grandchildren, one has autism and is on a gluten free diet and is doing better, he is 3 years old. My latest granddaughter is 1 year and weighed in at almost 9 lbs. Once solid food was given to her around 7 months things started to go down hill. Her weight dropped off she became anemic and she was constantly sick. So since it runs in the family my daughter took her off all gluten also herself since she is still nursing ( even though her DR. said why even wish that awfull diet on her, she's going to be tall blond and thin... so why even consider that diet... It's a good thing I wasen't with her because I would of done some things I wouldn't of been proud of) In just two weeks she was a new little girlbeing off of gluten Well since that she went to a new DR. that is a pediatric GI DR. and they have suggested a biopsy after she has had gluten again for at least 5 weeks.. I need to hear from others about this procedure and if anyone that young has had a biopsy done or knows of any baby that went through it?? Thanks, Grandma

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Lorraine my son had the biopsy done at 15 mo old and it was not a bad procedure. Most children do the biopsy in a gi lab but my son had to do it in a surgery room because he has had upper respitory infections before. They did 4 different test and it took less than an hour. The biopsy took less than 15 min. They weighed him did preop procedures then took him back and then did the biopsy and woke him up and brought him back to me. He then at and drank and then we went home. Very easy procedure. He bounced back very quickly and it never bothered him. Good luck and don't be afraid to ask questions to the dr and let him know any question you might have.

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I wish you all the luck...This is such a fustrating thing to have to go thru with little ones. My 2 year old was diagnosed with Celiac a week ago so we have been Gluten free for a week...I THINK:) STILL LEARNING....He had been sick for about 4 months and had lost alot of weight so I understand completely what your going thru...I felt like he was dying and he was....He had all the symptons that yours had and looked horrible....When he was having the diarrah all the time and it was horrible he had what they call C-Diff that is how is sounds but not the spelling...Antiboitcs fixed that. I ended up going to a GI doc and he is the one who did the upper and lower and said he had Celiac so if you have been to them I dont know what else to tell you but KEEP doing the diet..It is working....

You can email me at brantomlinson@aol.com if you want since our kids are about the same age:) I would love to get to know you and have someone to share FOOD ideas with...

Good luck and God Bless

Brandi

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Lorraine,

My son had his biopsy last June at age 2 1/2 and it was, honestly, the easiest part of this whole ordeal!!!

We had ours done in an OR. They gave him a little "loopy juice" to drink, then they put in the IV. I rode on the gurney with him to the room, and they put the anesthesia into the IV. It burned when it went in and he screamed, but that was literally like 10 seconds (just as they'd warned me) and then he was out cold. We left the room, they did the biopsy that took a whopping 20 minutes, and then we went to recovery and waited for him to wake up. It took about an hour for him to be fully with it (and REALLY pissed off about the IV in his hand) and then he asked for McDonald's. So, off we went to McDonald's. He was totally normal all day, no down time at all. Which I was sort of hoping for as I was exhausted at this point and really needed a nap. Sigh.

So, basically, I'd do this biopsy again over the initial blood draw anyday!! I wonder if they would give him that loopy juice before we go in for his one year check up!? ;-) Or, if they'd give it to me...hahahaha....

Bridget

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Guest taweavmo3

Lorraine....my daughter wasn't quite as young as your grandaughter, but the biopsy was SO much easier than I expected. I let my husband go back with Emmie, because in general she just handles things better with him. They didn't even change her out of her regular clothes....they just laid her down on the table, and he said as soon as she started to get scared, they had the mask on her and she was asleep in seconds. They waited to even put the IV in until after she was asleep. He said the hardest part of the whole thing was seeing her so lifeless like that, so be prepared for that.

Then about 20 or 30 minutes later, we both got to go back when she was waking up. She was a little sleepy, she drank a sip of water and we got to go home. I really expected her to be a grouch all day....but not two hours after the procedure, she was eating some of my tacos! She acted like nothing had happened at all, and was her normal self the rest of the day.

So, I was all worried for nothing!

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My daughter had just turned three when she had the biopsy. As someone said earlier it was easier on all of us than the blood draw. And my daughter is diabetic and used to shots. The worst part of the day, was when the nurse told us she couldn't go on the playground equipment, because of the anastesia.

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I just wanted to say hi and lend some support. Was it childrens mercy that you went to in KC? We have an appointment there with Dr Hodge in a few weeks, and I am not sure I want to keep it. I have heard nothing but horror stories of people trying to get a diagnosis. We ordered the Enterolab testing kit, and I hope to get some answers there. I really don't think we are going to push for a medical diagnosis at all at this point. My best friend works for the Dept of Ed, and has been in the school system here for decades and didn't think I would have a problem getting reasonable accomadations in the schools even without a formal medical diagnosis. Oh well, one step at a time. We shall see!

Jess

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Our daugther had her biopsy last December and was almost 2. It was very scary for us, as parents, but as the others have said, the procedure went very quickly, and she handled it very well. The hardest part for her was not being able to eat all morning before the sugery. I know how you feel though. I cried every night for the two weeks leading up to the procedure. I was so scared, and running every possible outcome through my mind. After it was over though, and we FINALLY had some answers, it was well worth it! Good luck, and God Bless!

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Minivanmama0300 It was children Mercy that we went to and we saw Dr. SanPlablo. I have heard some questionable things about Hodge but they were going for other problems. I loved the nurses there but I am very blunt with them about what I want done. Where are you from? Are from KC area or where? I am from around Salina. Good Luck email me if you have any questions. dsaabbb2005@yahoo.com Good Luck

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I am in emporia. Small world, huh? Dh interviewed for a job in Salina last year but we decided against it. We could have been neighbors, lol.

Two of the parents in our support group are familiar with childrens mercy, and neither had good things to say about the doctors either. Mainly bedside manner. We are sending back our enterolab test samples today, so hopefully we will get a result soon! Do you think any ped GI is easy to work with there?

Jess

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Thank you so much everyone for the great replys. Our Granddaughter has been back on gluten for about 1 month now and she went for her 1 year check up and she has not gained any weight and she is anemic again. She also has the dark circles around her eyes. She just dosen't look healthy.. When she was off of gluten as a trial she was gaining weight and her hemaglobin went up and she looked so much better. So in 3 weeks she will have the biopsy. It's just at 1 yr old it seems like she so little to have it and I'm hoping that it will be no question that she has or dosen't have celiac. You just wonder how long it takes for the gluten to do damage to her villi??? Thanks again and I will let everyone know what the outcome will be.. Lorraine

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