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T-Beth

Self-diagnosis Of Celiac Disease In Young Son

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I am a single mother of a beautiful 20 month old boy. My son went through several months of diarrhea, weight lose, continually eating but not being able to hold anything in. He was alway tired and fussy. I thought I'd never figure out what was wrong with my baby.

After many trips to the doctors and several test that all came back negative, I finally started looking into symptoms myself. After weeks of searching on line for the symptoms my son had; I was given two very likely problems. One Crohn's Disease and the other Celiac Disease.

Finally I spoke with my son's pediatrician about gluten. He said yes that's it lets stop all gluten products and see what happens. After two weeks of my son and I being on a gluten free diet his diarrhea had stopped. I never thought I would be so happy to see a normal bowel movement in my life.

Now two months later, my son is thriving. He has gained some weight back, he's playing again, and he is eating regular again.

Is there anyone else out there that diagnosed their chid of Celiac Disease before the doctors did?

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Is there anyone else out there that diagnosed their chid of Celiac Disease before the doctors did?

Yes. I also managed to figure it out before the pedis or the GI doc did (although I did get a shove in the right direction from an acupressurist who teaches at a school for alternative medicine). Prior to pulling glutens we were put through a battery of tests for all sorts of disorders (cystic fibrosis was one) and had all sorts of blood work and panels done which only turned up a slight sensitivity to egg whites and whey. The Celiac panel came back as normal but dd responded to the gluten-free diet the same day we started it. So no matter what the tests said, I KNOW that glutens are not for her. And the funny thing is, she never showed symptoms of being sensitive ot dairy or eggs until we'd been on the diet for about 5 months or so. One day she just started rashing out and her behavior was out of control, so we had to pull those two things out of her diet as well. Since going gluten-free, we have had other food sensitivities show up and so we eliminated those as well. It's slow going at times and gets frustrating when there are allergies compounded with gluten intolerance but at least I know that my dd isn't in any pain and is thriving.

In some ways, I am happy to have found the problem without invasive tests being performed. But at times, it would be nice to know for sure if this is Celiac's Disease. The info I have gotten from our docs has been quite confusing at times and 95% of what they suggested to do has resulted in some serious setbacks on getting dd well. Still hoping to find a decent doc around here for dd in the future, but for now, we're doing pretty well on our own.

Glad to hear that you found some answers and that your child is thriving. What a relief!

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Yup, I was told from his blood work that he didn't have celiac. My pastor came and prayed with us one night for my son and that very night a few hours later I found celiac on the computer and just knew it had to be that. So we went gluten free and low and behold he turned into a normal child in just three days. Normal poop in two weeks! It was a VERY stressful time. My health suffered because of all the stress with my son for months. He was sick from 7months until 14 months, but got much worse around 9months and even worse when the GI doctor recommended I quit breastfeeding at a year. GRRRRRRRR!!

Good for you!

Monica

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Yes. I also managed to figure it out before the pedis or the GI doc did (although I did get a shove in the right direction from an acupressurist who teaches at a school for alternative medicine). Prior to pulling glutens we were put through a battery of tests for all sorts of disorders (cystic fibrosis was one) and had all sorts of blood work and panels done which only turned up a slight sensitivity to egg whites and whey. The Celiac panel came back as normal but dd responded to the gluten-free diet the same day we started it. So no matter what the tests said, I KNOW that glutens are not for her. And the funny thing is, she never showed symptoms of being sensitive ot dairy or eggs until we'd been on the diet for about 5 months or so. One day she just started rashing out and her behavior was out of control, so we had to pull those two things out of her diet as well. Since going gluten-free, we have had other food sensitivities show up and so we eliminated those as well. It's slow going at times and gets frustrating when there are allergies compounded with gluten intolerance but at least I know that my dd isn't in any pain and is thriving.

In some ways, I am happy to have found the problem without invasive tests being performed. But at times, it would be nice to know for sure if this is Celiac's Disease. The info I have gotten from our docs has been quite confusing at times and 95% of what they suggested to do has resulted in some serious setbacks on getting dd well. Still hoping to find a decent doc around here for dd in the future, but for now, we're doing pretty well on our own.

Glad to hear that you found some answers and that your child is thriving. What a relief!

I'm glad to hear that your daughter is doing well also.

I'm still trying to completely understand how this occurs and why there isn't a more better way to find this problem in all people. I have read in several articles that Celiac Disease is one of the most misdiagnosed diseases due to the lack of doctors asking about nutrition.

I have had to take my cj off of dairy products also. He can occasionally eat hard cheeses but that's it. I have found that he actually loves SILK vanilla soy milk. This has definately become a learning experince for me. Everyday there is something else I have to learn to keep him from becoming ill.

Thank you for sharing your story with me. I hope your daughter continues to thrive.

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Guest nini

yup happened to me too... but in my case I had just been dx with Celiac, and my Daughter's Doctors refused to believe me. They said that she just had IBS and I needed to feed her MORE WHEAT FIBER... boy were they wrong.

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The daughter-in-law of a friend of mine said she was dx'd at a party and it wasn't by a doctor. I wish someone had dx'd me about 5 yrs ago. I think one reason more of us are not suggested a gluten-free diet is that most people don't discuss their symptoms with strangers or family members for that matter. Anyhow the next best thing is for me is to one day diagnose someone. Take care.

Tom

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Guest nini

Tom, shortly after my dx, I dx'd a friend of mine that works near me... she went to her Dr. after I told her what I thought it was and LO AND BEHOLD she tested positive on all accounts! It was a great feeling to help and to see her getting better too!

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I am willing to bet that more then 50% of us (that is probably on the low side) figure this out before the doctors do. In my family, at least 3 of us are celiacs and we all told the doctors first--they had no idea what was wrong. Deb

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A Kinesiologist was actually the first to mention to me that I should not eat gluten. After trying the diet he suggested, and going off of it, I was convinced there was something to it. Long story short, When I went to the Gastro., I started off by asking if I might be sensitive to wheat. Luckily, he listened to me and I was finally DX after 20 years of not knowing what was wrong with me. Back then, I had never even heard of Celiac--

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I figured out what was wrong on my own too. Doctors kept telling me she was fine, she was just going to be small like me. She was 3 years old and 20 lbs, less than what she weighed at 12 months old. All I had to do was google her symptoms, and celiac came up right away. After that, I told the ped we were going to a GI doc. The GI doc took one look at Emmie, and said she looked like a classic case. We had a positive bloodtest and biopsy one week later! I think it was such a blessing that my dd was dx'd so early, b/c of her, we now know what was wrong with my brother all these years, and probably why I am forever anemic, despite loads of iron. Now we're all one big, gluten free family!

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Yup. Awful, nightmarish mush poops since birth (formula). More symptoms were apparent as she got older. Finally at 7yo, after complaining for years to several of her drs about the several symptoms that were indicative of celiac disease, I really figured it out when someone else I know was dx and that little girl had the same bloated belly. I asked them specifically to rule out celiac. She had the blood tests and tTGA was through the roof, subsequent biopsy was also pos. After ONE DAY gluten-free she had a her first normal BM. She had been eating so much wheat every day, I think that's why there was such a quick good reaction. Her daily bellyaches stopped almost immediately and now she is definitely is not as fatigued as she always was before. Within 2 weeks her belly started deflating. What a change! I can't believe she suffered for so many years. I am trying not to focus my energy on being pissed at the medical personnel who didn't catch this for so many years.

Edited by junieb

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I found out with my children. My son was almost starved to death and was having severe diahrea and vomiting. He also had sores on him bottom. After he was 15 mo old I took him to a gi dr. He ran test after test after test and found nothing He tested him for every thing a said that it was all my imagination that he had any problem. So on a Friday after his 18th stool and it only being 3:30 in tha afternoon I called the dr and said if you don't do something I will find another dr. I said what about a glutten intollerance. The dr said do what ever you want because the labs all came back fine. In 4 days my son at the age of 20 mo old had his first solid bm. We have been 11mo to the day gluten-free and he is thriving and growin and doin great.

Then I asked the drs to test all my kids and the refused. My 8 yr old has been to gi drs, allergiest and every other kind of drs and they always say the don't know what is wrong with her. She has severe sinus promblems and constipation. 7wks ago I put her on a gluten-free diet and she has been sinus infection free and normal stools every since.

We had the challage of there is no family history. I always say parents know best. Also by us not having a paper dx insurance can not deny for any reason now. Some people have to have a correct dx but for me if my children are healthy and thriving then that is dx enough for me.

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