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LJ_Mom

Was Your Child Sick (Cough, Flu) Pre-Diagnosis?

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Hi,

To keep myself sane and occupied I'm trying to document the signs of my son's celiac, pre-diagnosis. My hope is to help educate the pediatricians who missed every single sign, and to help parents know what to look for, and when to fight for more answers...

When your child was an infant, did you have the experience of your child (pre-diagnosis) being sick constantly? Our son was sick every single week in daycare - so much so that we had to pull him out. Our doctors insisted this was in the range of normal for a (7-9 month old) child in daycare. 9 viruses over the course of 12 weeks was normal. We pushed for some sort of testing or answer but got nothing.

Keeping him home helped the colds and coughs, but sporadic diarrhea continued and we still got months and months of "within the range of normal". The wanting to eat constantly, and waking nightly wimpering, the distended stomach that disappeared in the morning were "within the range of normal, just gas, teething, just a toddler".

I feel that it is up to me (us?) as parents to help these doctors do a better job. So if you have any similar experiences, please share.

Thanks.

Lora

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Hi,

To keep myself sane and occupied I'm trying to document the signs of my son's celiac, pre-diagnosis. My hope is to help educate the pediatricians who missed every single sign, and to help parents know what to look for, and when to fight for more answers...

When your child was an infant, did you have the experience of your child (pre-diagnosis) being sick constantly? Our son was sick every single week in daycare - so much so that we had to pull him out. Our doctors insisted this was in the range of normal for a (7-9 month old) child in daycare. 9 viruses over the course of 12 weeks was normal. We pushed for some sort of testing or answer but got nothing.

Keeping him home helped the colds and coughs, but sporadic diarrhea continued and we still got months and months of "within the range of normal". The wanting to eat constantly, and waking nightly wimpering, the distended stomach that disappeared in the morning were "within the range of normal, just gas, teething, just a toddler".

I feel that it is up to me (us?) as parents to help these doctors do a better job. So if you have any similar experiences, please share.

Thanks.

Lora

Hi Lora,

I agree with you 100% that it is up to us. My son had a cough and cold symptoms all the time since he was about 3 years old. Before then he had severe cramps in his legs and in his feet. One week when he was 4 years old was when the belly issues came on and he started to have severe vomiting and diarreah for over a week with no control. They tested him for everything including parisites. He would go through this at least once a month and I would be in the Dr's office, clinic and ER so much I would cry. The doctor ( nurse practitioner) said that his stomach must react when he gets a virus...the cold and coughing symptoms. I said there is no way that a child gets this sick so frequently and its " Normal". I asked her point blank for a referral ( I wish we had a PPO at the time) to a Gastroenterologist. She said lets try not to " overreact"!!! I was furious when I walked out. When he started to get blood in his stool I called and demanded to see someone else in the office. We are military so we can't go anywhere else but the base for medical care but, I refused to see his doctor again. We saw a new pediatrician and after looking at his chart he immediatly sent us to a Peds Gastro. I explained my sons story and he sat there smiling cause he knew right away what it was. he was finally dx with Celiac Disease after a DNA gene test and biopsy. This was a year and a half after his belly symptoms started. Like I said before he had severe leg cramps before then for a few years that the docs said were growing pains but, now come to find out they can be a symptom of celiac disease.

My daughter is 2 and she has been coughing constantly since she was 1 with lots of phelm to the point of gagging and has severe constipation and gas. She is going in this month to be checked. I am already pretty sure that she will be positive as well just because of me watching her reactions when she eats more things with Gluten she gets a lot worse.

My feelings about this disease after watching what my son has gone through is that it should be a test that is automatically ran when they have a physical or checkup. We are in a prescription loving society and doctors are to fast to write a prescription to fix the symptom and not get to the cause. Symptoms are so different in all people. For how common this disease is becoming I feel that it should be something to automatically test for. Most docs are unaware or don't even think about it because they are not fully educated about it. I talk to everyone I know and spread the word and show them websites and bring in info to help them be aware.

Has your little one been tested or dx yet for celiac disease?? I hope he is doing better...If you are still fighting don't stop until you feel confident of your answer. My motto is that doctors don't always have the answer cause they are "practicing" medicine so be your own advocate.

Marcie

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Hi,

To keep myself sane and occupied I'm trying to document the signs of my son's celiac, pre-diagnosis. My hope is to help educate the pediatricians who missed every single sign, and to help parents know what to look for, and when to fight for more answers...

When your child was an infant, did you have the experience of your child (pre-diagnosis) being sick constantly? Our son was sick every single week in daycare - so much so that we had to pull him out. Our doctors insisted this was in the range of normal for a (7-9 month old) child in daycare. 9 viruses over the course of 12 weeks was normal. We pushed for some sort of testing or answer but got nothing.

Keeping him home helped the colds and coughs, but sporadic diarrhea continued and we still got months and months of "within the range of normal". The wanting to eat constantly, and waking nightly wimpering, the distended stomach that disappeared in the morning were "within the range of normal, just gas, teething, just a toddler".

I feel that it is up to me (us?) as parents to help these doctors do a better job. So if you have any similar experiences, please share.

Thanks.

Lora

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I also agree with you. I am a mother of a 6 year old with a positive biospy in November 2009. We have struggled to obtain a dx for years and now that we have one it has been such a relief. My child had one acute illness after another, especially after he started kindergarden this last year. My pediatrician wanted to do immunity testing on him but I refused wanting to wait till we had the results of our biospy. He stated that there is no clinical data to support the fact that celiacs have a higher incidence of acute illness. I did find some studies online performed in germany. I am also a dieititian and I just could not believe that if a kid is malabsorbing that it would not effect his immune system. Needless to say since we have changed his diet to gluten free I have only stayed home from work once - that has only been since mid novemember but prior to novemember I was home every week with him. He also had bone aches, restless sleeping, lack of energy and very pale all the time. Hope that helps. Physicians are starting to think out of the box when it comes to celiac but they still have a long ways to go.

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My daughter was a bit different....once she actually started looking ill, she never caught a cold or got sick at all. I attribute this to her immune system constantly being "on". Once we got her on the diet, her immune system could take a break, then she seemed to catch every cold out there, but nothing too bad.

Like many, it took two years to finally get a diagnosis. She was 3 years old and weighed 20 pounds, which was actually less than what she weighed at 12 months old. Why this didn't make red flags go up for either of the pediatricians I saw still baffles me. She grew, but just barely. I am petite (Celiac as well) so the doctors could not see past that, they would actually laugh at me, and have comments like "what, you expect to have a basketball player?"

My dd had developmental delays as well, and it took me ages to figure out where to go to get help for her. The pediatrician just kept telling me that she couldn't be autistic b/c she played with other children, so we just needed to "wait and see" I hate that term. At the time, I didn't know about developmental peds, and it took another year to find out how to get help. This is why we've been through 4 pediatricians in the past!

We now have a holistic ped who knows about the diet, doesn't freak when I say my kids are dairy free, and gives me a choice about vaccines. I'm in pediatrician heaven, finally after 7 years :D

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My sons were actually pretty healthy. I mean, they got sick, had colds here and there but nothing overly wacky (or constant) except one incident that I'll mention in a minute. As far as bowel habits, both just had exaggerated habits from the time they were babies and exclusively breast-fed which is why I didn't think too much of it (one always pooped, the other always constipated). My youngest son apparently was always bloated so I didn't see it. Poor guy.

The only reason we even tested my oldest was a suggestion from their pediatrician at his 4-year check-up. At the time, my son was going through a bunch of tests because he was sick, fatigued, just not himself. He had had some kind of stomach bug close to Christmastime in 08. By the end of January he was sleeping a lot (falling asleep during the day), hardly playing, very pale, etc. After initial testing they found a nodule in his lung. Talk about scary! But eventually it turned out to a fungal infection (histoplasmosis, very common in our area). But what's not common is how he reacted to it. Usually it's of concern with those with weak immune systems (cancer patients, HIV, etc.). Anyway, because of this illness, his celiac symptoms were actually heightened. They started to lessen once he was on treatment for the infection. But his doctor still threw that out there, saying how celiac disease is a master in disguise. So basically on a whim, more to eliminate celiac disease than anything, we did the test. And what do you know? Positive.

His younger brother has had a rough time with language but once on the gluten-free diet I've been seeing drastic changes in him. Even with his temper though sometimes it's difficult. And it's difficult to see what's normal or not for him.

Oh, if their pediatrician hadn't mentioned it, we'd probably be in the boat of many parents before us, simply because we would have had to address my youngest son's lack of height/weight gain, language delay, etc. My oldest was slowly not gaining weight too but he was still growing, still tall. Thank goodness we were able to avoid all that! My heart goes out to you!

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Thanks for your replies. Sounds like (as with all things celiac) it depends on the kid. My son was perfectly healthy until I stopped breastfeeding at 6 months - sick as a dog from 6 - 10, and hasn't had any fevers or respiratory illnesses since. Of course we started with the chronic loose stool at about 10 months...

I've kicked and screamed enough to get us into the pediatric GI at Children's Hospital in Boston next week, so hopefully we'll get some answers. (right now we have only used elimination diets to test, and haven't been back on gluten long enough for other testing).

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My daughter was a bit different....once she actually started looking ill, she never caught a cold or got sick at all. I attribute this to her immune system constantly being "on". Once we got her on the diet, her immune system could take a break, then she seemed to catch every cold out there, but nothing too bad.

Like many, it took two years to finally get a diagnosis. She was 3 years old and weighed 20 pounds, which was actually less than what she weighed at 12 months old. Why this didn't make red flags go up for either of the pediatricians I saw still baffles me. She grew, but just barely. I am petite (Celiac as well) so the doctors could not see past that, they would actually laugh at me, and have comments like "what, you expect to have a basketball player?"

My dd had developmental delays as well, and it took me ages to figure out where to go to get help for her. The pediatrician just kept telling me that she couldn't be autistic b/c she played with other children, so we just needed to "wait and see" I hate that term. At the time, I didn't know about developmental peds, and it took another year to find out how to get help. This is why we've been through 4 pediatricians in the past!

We now have a holistic ped who knows about the diet, doesn't freak when I say my kids are dairy free, and gives me a choice about vaccines. I'm in pediatrician heaven, finally after 7 years :D

this sounds like my daughter! she's in a class for expressive language delay. at 3 1/2 years old she weighs 29 pounds. did your daughter also have chronic diarrhea like mine?

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My daughter had constant throat and sinus infections pre-diagnosis. She gets one now after almost every glutening. About a week later she'll come down with the worst stuffies ever.

After going gluten free, this probably cleared up completely.

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I've kicked and screamed enough to get us into the pediatric GI at Children's Hospital in Boston next week, so hopefully we'll get some answers. (right now we have only used elimination diets to test, and haven't been back on gluten long enough for other testing).

We've been going to Children's and I love, love, love them. We were referred to gastro in Dec '08 and the doctor did stool sample test and found my daughter is malabsorbing. The first test the doctor ordered was a sweat test to rule out cystic fibrosis, but told me not to worry because her history did not suggest CF at all. Her sweat tests were in the borderline range, so we've been on that roller coaster for the last year. We did a 72-hour fecal fat test and my daughter has pancreatic insufficiency (about 90% of the kids with PI have CF). However, the doctors disagree whether or not she has CF because despite starting on enzymes, she hasn't put on an ounce and her history of coughs just don't sound like the typical CF. Her pulmonologist suggested she has allergies -- except she ALWAYS gets a fever whenever she gets a cough.

We redid the fecal fat test while taking enzymes and she's still malabsorbing. So now we are running tons of tests to figure out what is happening on top of the pancreatic insufficiency. My daughter just had an endoscopy last week (it takes six or seven business days for results. Augh. We're still waiting!). So, hmmm, your question about colds and flu is most intriguing... Maybe that explains my daughters illnesses that sort of sound like CF, but don't really match up.

Even as a baby, she would get coughs every winter/spring. In the winter, she would cough for days -- just continual loud, dry coughs and then it would suddenly stop. In the spring, she gets one continual cough for weeks. She has a drippy nose and she clears her throat constantly. Whatever type of cough she has, she always runs a fever -- but if you didn't happen to put your hand on her forehead, you'd never know it. She never appears to be rundown. She's eight now and we still get the drippy nose/coughing/fever every year that kicks in whenever the temperature drops. Except this year -- she hasn't gotten it yet. I was thinking that the enzymes, finally getting some nutrition to her little body, was helping her stay healthy. But she still gets ear infections -- she's had two this year.

I think you'll really like Children's. We've been downtown a couple of times, but mostly go to the Waltham location. Our pediatrican took her son to gastro for years and she said their doctor had zero bedside manner, but was an amazing doctor. But everyone I've worked with has a great bedside manner. Good luck. And thanks for the intriguing question -- it may explain a lot of things about my daughter...

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My son (who is 6 now) had problems from birth with being sick. On baby formula he would spit up the formula and have constipation. They told me it was a lactaid issue and had me switch to soy forumla. For awhile he got better. Then he started on baby foods and suddenly he was spitting up and getting constipation again. He also was small for his age and always had a distended belly. The Dr. went through everything with us. It's just adjustements to new foods we were introducing, then it was, oh he's allergic to blue berry muffins, (to this day I can't remember how they came up with that one. Next we were told his issues were because he was fighting potty training. Colds were because of day care, ear infections because of colds. Constpitation because of fighting potty training. Finally in Dec of 2009, his Dr. stood up and took notice when my son went 4 weeks, count them, yes 4 weeks without a bowel movement and got really sick. She finally ordered some test and one of those test was the blood test for celiacs. When that came back positive she sent us to the peds gastro and we got the bioposy done in Jan of 2010.

We believe he was born with it and had it from the start. And people wonder why I don't trust Doctors. LOL. Yes.. it is our job.. The problem is if we insist something is wrong because we know there is, we get looked at funny and they wonder if it's us. They don't want to believe that something is actually wrong. Mother's instinct. Follow and trust it.

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My son hasn't been diagnosed as of yet, but he is is gluten free until he does a challenge. And before going gluten free he was sick all the time, it would never be simple either, a cold would turn to infections, he was on antibiotics all the time, diagnosed asthma before he was 2, in and out of hospital for things like bronciolitis which he had twice by the time he was 4 months old etc etc. He has not even had a cold in 7 months - (he has been gluten-free for 11 months) that is totally unheard of for him. I am shocked about it actually!

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I am amazed at reading how everyone's kids had symptoms. I feel kind of bad that these poor kids go through so much because of something that occurs naturally in much of our food.

My daughter was not sick whatsoever. She was diagnosed with type 1 diabetes in 2009, and as a part of routine blood work each year by her endocrinologist, her antibodies for gluten intolerance came back at over 300. She had no symptoms: normal bowel movements every day, healthy appetite, no stomach aches, and she's highly intelligent. The only thing I can notice going back is that she went from being in the 80% for weight height at birth to being in the 20% between ages 4-8. We thought it was the diabetes causing the slow growth because she responded to treatment and put on six pounds and two inches in less than a year. But really, she was happy and what I thought was healthy.

Even after positive diagnosis, the doctor found that she was not low on any of her nutrients, but he contributed that to the multivitamin I give her every day.

In fact, when her nurse told me that she wanted to even test for Celiac disease, I didn't take her seriously and put off the blood test and endoscopy for months. Now I feel horrible that I went so long because I could have caused some serious problems. Fortunately her doctor said she should have a normal intestinal tract soon.

Her doctor told me that in most of the cases he sees, there aren't any symptoms present. This makes me believe the disease truly is severely underdiagnosed.

Now, because of the family history (which actually only exists in me and my three girls, no prior history in any other family members) my other two daughters will have blood work done next Thursday. Combined between three of us (one has no diseases) we have celiac disease, diabetes, hypothyroidism, hypoglycemia, and chronic anemia. Whew.

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