Celiac Disease Or Cystic Fibrosis?

[ptkds]

I had my oldest dd at the allergist's yesterday and I was giving him our family history. When I told him about my 20 m old dd having Celiac disease, he asked me if she had been tested for Cystic Fibrosis. I told him no, and asked him why. He said that they sometimes mimick each other, and cystic fibrosis is often misdiagnosed as celiac disease. Is this true? Now I am kinda worried because she has had a bad cough and congestion for over a month now. She has been on several rounds of antibiotics with no help. She had a second set of tubes put in and her adenoids removed on Monday, and there is still no improvement. But the gluten-free diet has helped her diarrhea and she seems to be feeling better.

So, should I talk to my dd's ped about this, or is this other dr wrong?

Thanks!

ptkds

[Jestgar]

I'm pretty sure cf has a very clear genetic trail. It should be easy enough to test for.

[2kids4me]

He said that they sometimes mimick each other, and cystic fibrosis is often misdiagnosed as celiac disease.

I dont know that is is often misdiagnosed but a pediatrician should test any child under 2 for cystic fibrosis if they have issues of malabsorbtion - along with celiac and inborn errors of metabolism and a number of other conditions. Whether or not they test for everything would be determined by symptoms and medical history.

It would be easy to rule out by current testing methods.

Sandy

Open Original Shared Link

Two patients with cystic fibrosis (CF) who subsequently developed celiac disease (celiac disease) are described. Since organ culture of intestinal mucosa has been used to establish an in vitro model for the study of celiac disease, we utilized this opportunity to determine whether duodenal mucosa obtained from each of these two patients and their immediate families differed in its organ culture behavior from mucosa obtained from patients with celiac disease alone. Additionally, as specific HL-A types are associated with celiac disease, we used HL-A typing to determine whether the two patients with CF-celiac disease differed genetically from patients with celiac disease alone. One of our patients was HL-A8, the most common type associated with celiac disease; the other was HL-A12, as are many of the non-HL-A8 celiac patients. The response in organ culture of the mucosa of these two patients was the same as the response in organ culture of the mucosa from patients with celiac disease alone. These and other data suggest that celiac disease occurring in patients with CF is no different than celiac disease occurring alone.

Open Original Shared Link

Celiac disease: a pediatric perspective

on page 4 of the dcoument (its pdf) it states: Patients with cystic fibrosis have a 5 fold risk of celiac disease compared with the general population.

[Jestgar]

There's always the old way: kiss your baby and see if he tastes salty. Not a definitive test, but it's what they did for a long time.

[Nikki2003]

There's always the old way: kiss your baby and see if he tastes salty. Not a definitive test, but it's what they did for a long time.

Quick question on this topic. Even if they test + for celiac they could have cf also? Is this true?

Thanks

[2kids4me]

Even if they test + for celiac they could have cf also

yes, take a look at the links I included in my earlier post.

Celiac and CF can occur together, just as a number of autoimmune disdorders can occur with celiac in the same patient.

On the other hand, many patients have celiac and only celiac.

Some patients have celiac and a number of food intolerances or allergies but no other "diseases".

Patients with other autoimmune disease aren't always celiac.

It is confusing - what the doctor for the OP was doing -was being thorough - that, this was a young child diagnosed with celiac - he was wanting to make sure cystic fibrosis ahd been ruled out too.

sandy

[Nikki2003]

yes, take a look at the links I included in my earlier post.

Celiac and CF can occur together, just as a number of autoimmune disdorders can occur with celiac in the same patient.

On the other hand, many patients have celiac and only celiac.

Some patients have celiac and a number of food intolerances or allergies but no other "diseases".

Patients with other autoimmune disease aren't always celiac.

It is confusing - what the doctor for the OP was doing -was being thorough - that, this was a young child diagnosed with celiac - he was wanting to make sure cystic fibrosis ahd been ruled out too.

sandy

that is strange,what are the symptoms of cf or are they the same?

Thanks

[Felidae]

Back in the '70s when I was a youngster, they tested me for cystic fibrosis which luckily was negative, but did not test for celiac. If only they had tested me for celiac back then.

I know, this is not very helpful, but I just wanted to share.

[Nikki2003]

Back in the '70s when I was a youngster, they tested me for cystic fibrosis, but not for celiac. If only they had tested me for celiac back then.

I know, this is not very helpful, but I just wanted to share.

I am still trying to figure out why nicole always gets a runny nose at first then always sinks into her chest and then she get's even more sick from gagging on all the mucus and it takes 2 wekks to get a bit better then about a week after that usually it comes back and does the same thing.

Celina

She is on her 3rd chest cold I guess we will call it in 6 weeks with maybe a few days to a week rest inbetween them.

Hopefully they will go away all together.

[2kids4me]

Celiac has a range if symptoms that are simliar to other diseases, and is classified as a type malabsorbtion. (because of intestinal damage). It can cause growth failure, failure to thrive, gastrointestinal symptoms seem to predominate in babies and toddlers. Older children and adults can have a long list of symptoms - bedwetting to migraines and anything in between.

Cystic fibrosis can present as failure to thrive, growth failure and gastrointestinal signs of malabsorbtion

The specific signs and symptoms of cystic fibrosis can vary, depending on the severity of the disease. For example, one child with cystic fibrosis may have respiratory problems but not digestive problems, while another child may have both. In addition, the signs and symptoms of cystic fibrosis may vary with age.

Signs and symptoms in newborns

In some newborns the first sign may be a blockage of their intestines (meconium ileus). This occurs when meconium

[Nikki2003]

Celiac has a range if symptoms that are simliar to other diseases, and is classified as a type malabsorbtion. (because of intestinal damage). It can cause growth failure, failure to thrive, gastrointestinal symptoms seem to predominate in babies and toddlers. Older children and adults can have a long list of symptoms - bedwetting to migraines and anything in between.

Cystic fibrosis can present as failure to thrive, growth failure and gastrointestinal signs of malabsorbtion

Diseases are not easy to diagnoses - many diseases especially in babies can be from a long list of causes. A good ped will consider all of the possibilities and test for something, even if it's an "outside chance".

We have the same probem in vet medicine - someone brings in a dog with diarrhea - is it something he ate, a food allergy, giardia, parasites, pathology in the intestine, pancreatic failure, hyperthyroidism.... or did he sneak a snack from the garbage in the alley ?

I am not comparing a dog to babies - only that it can be cahllenging to diagnose gastrointestinal problems in man or animal.

Knowing what I know now, I dont understand why they don't screen for celiac more often

Sandy

I am still having trouble with nicole's weight gain she has only gained a very little maybe a pound she has been gluten-free for 6-7 months now and eating better than before gluten-free. she is still strugglind between the

25-32nd%.

she is getting a little bit taller. She is also still on pediasure (gluten-free) maybe 2 X day.

[chrissy]

is 25-32% for weight something you feel is not a healthy weight?

[Nikki2003]

is 25-32% for weight something you feel is not a healthy weight?

up until she was about 1 yr old she was always in the 85-90%. then she basically stopped eating and went down from there

she is skinny but sometimes her belly still get's bloated. but her arms,legs etc. are bony. but she should start gaining weight soon.

celina

[Nikki2003]

up until she was about 1 yr old she was always in the 85-90%. then she basically stopped eating and went down from there

she is skinny but sometimes her belly still get's bloated. but her arms,legs etc. are bony. but she should start gaining weight soon.

celina

I did do the kiss test and she does taste salty. I emailed the ped to see what he thinks, I am waitinf to hear back.

Thanks for all the info everyone.

[tarnalberry]

I am still trying to figure out why nicole always gets a runny nose at first then always sinks into her chest and then she get's even more sick from gagging on all the mucus and it takes 2 wekks to get a bit better then about a week after that usually it comes back and does the same thing.

Celina

She is on her 3rd chest cold I guess we will call it in 6 weeks with maybe a few days to a week rest inbetween them.

Hopefully they will go away all together.

That's me - to a T - for most of my life. It was at least partially asthma, and partially an immune system that takes it's time fighting back. (I didn't have a total IgA test, but I'd bet that it'd show me as deficient.)

If it's coming back that quickly, she may be experiencing resistance to antibiotics, or need them in the first place. I would encourage you to take her to a specialist, and more fully explore whether or not she's getting full treatment when she does get sick.

[Nikki2003]

That's me - to a T - for most of my life. It was at least partially asthma, and partially an immune system that takes it's time fighting back. (I didn't have a total IgA test, but I'd bet that it'd show me as deficient.)

If it's coming back that quickly, she may be experiencing resistance to antibiotics, or need them in the first place. I would encourage you to take her to a specialist, and more fully explore whether or not she's getting full treatment when she does get sick.

she is seeing an asthma/immunologist next month.

celina

[Nikki2003]

she is seeing an asthma/immunologist next month.

celina

Her gastro emailed me back and said I should speak with her pediatrician about the work up for this. But her ped didn't even know much about celiac I doubt he has kids with cf or even know the testing for it. He is a small practice not a chain.

How would I ask something like this to him and do I ask a nurse,what do I say to get an appt or ask on the phone. I am so confused.

Thanks

[Fiddle-Faddle]

Sorry if I am suggesting something you already looked into, but did you try taking her off dairy? I only ask because a friend's daughter had colds and ear infections as a reaction to dairy, but never any other kinds of reactions, so she was on intermittent antibiotics for a long time until the ped suggested long-term (like for a year or more) low-dose antibiotics, at which point my friend went to a naturopathic doctor, who suggested taking the child off dairy.

Bingo--no more colds or ear infections, except when she tried challenging her with dairy again.

Interestingly, she did NOT react to dairy in Germany or Switzerland (we were there for work, and she ran out of soy milk), and my friend thought her daughter had outgrown the problem. But then we came back tot hte state, and BLAM, another ear infection when she had milk here.

My friend said she found out that cows in EUrope do not consume antibiotics, hormones, and pesticides at the same rate as American cows. Unfortunately, I do not have any references for this, so at this point, it's all hearsay. Still, it might be worth looking into....

[Nikki2003]

Sorry if I am suggesting something you already looked into, but did you try taking her off dairy? I only ask because a friend's daughter had colds and ear infections as a reaction to dairy, but never any other kinds of reactions, so she was on intermittent antibiotics for a long time until the ped suggested long-term (like for a year or more) low-dose antibiotics, at which point my friend went to a naturopathic doctor, who suggested taking the child off dairy.

Bingo--no more colds or ear infections, except when she tried challenging her with dairy again.

Interestingly, she did NOT react to dairy in Germany or Switzerland (we were there for work, and she ran out of soy milk), and my friend thought her daughter had outgrown the problem. But then we came back tot hte state, and BLAM, another ear infection when she had milk here.

My friend said she found out that cows in EUrope do not consume antibiotics, hormones, and pesticides at the same rate as American cows. Unfortunately, I do not have any references for this, so at this point, it's all hearsay. Still, it might be worth looking into....

That is strange. But I have tried her off dairy for a while and she still got sick. But hopefully the dr we see next month will have some answers. She had some Blood work done before that showed one of her immunoglobulins (part of the immune system was very low)

normal is at least 1.0 and her's was <0.2

thanks

celina

[Nikki2003]

That is strange. But I have tried her off dairy for a while and she still got sick. But hopefully the dr we see next month will have some answers. She had some Blood work done before that showed one of her immunoglobulins (part of the immune system was very low)

normal is at least 1.0 and her's was <0.2

thanks

celina

The ped's office said they are going to order the test and call me when it is set up.

[Nikki2003]

The ped's office said they are going to order the test and call me when it is set up.

They scheduled a sweat test at the childrens hospital for tomorrow morning.

celina

[ptkds]

Nikki,

Please let us know how it goes. I am so sorry about this. I hope all is ok with her.

Good luck

ptkds

[Nikki2003]

Nikki,

Please let us know how it goes. I am so sorry about this. I hope all is ok with her.

Good luck

ptkds

Her test is negative. Which is awesome.

celina

[ptkds]

That is great news! I bet that is a great relief to you. I am happy for you!

ptkds

[Nikki2003]

I am very happy to hear that although she is startin another cold now since this morning. Hopefully it will just stay a cold and just involve a runny nose and not go to her chest. But if it does her asthma dr gave me prednisone to use just incase it comes back. But I would call her fist before giving it to her. This is her now 4th cold hopefully this one stays in her upper respiratory trac in 8 weeks.

Thanks for all your support on this I couldn't do it without it.

Thanks a bunch

Celina