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More Then 1 Child With Celiac?

key

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key Contributor
key
Posted

My baby has celiac disease and so do I. He had the classic symptoms. My four year old has been having stomach aches, seems to not eat well and also has dropped on his growth curve. He is also very gassy and bloated alot. Yesterday he had a very pale stool and loose. He also has mouth ulcers and today he had a very small amount of reflux, this has never been a problem for him. He woke up lastnight with a tummy ache and today. I have been worrying that has a problem with gluten for about six months. My doctor where I moved from wasn't concerned. He thought he "looked" healthy!

I know I need to have him tested, but I hate that I don't know any doctors here. We just moved to Frederick, MD about a month ago. I hate seeing him sick and want him to get his blood drawn quickly. My gut tells me this is his problem, but I don't want to just take him off wheat, because I want our families to support us and not think I am overreacting. I guess it is possible that something else is bothering him, such as dairy or soy, but he used to be really big and now he is smaller then all his friends.

Does anyone have any advice?? My mom of course thinks that it isn't possible to have two kids with it. She doesn't even believe I have it.

THanks,

MOnica

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AndreaB Contributor
AndreaB
Posted

I don't know if we have celiac, but we do have gluten intolerance per enterolab. Me and my two oldest children. I believe my youngest will have the same problem since his eczema clued us in after allergies tests that I underwent. We didn't have any obvious symptoms.

Luvs to Scrap Apprentice
Luvs to Scrap
Posted

I don't know for sure if my DD has it--we are still in the testing process with her but my DH and I are strongly suspecting that is the culprit. My DS and DH have celiac. An example of someone who outwardly doesn't look like a child with celiac would be my DS. He is talk and built for his age (he is almost 4) He was 10 pound 15 ounces at birth and has kept his pace on the growth child his whole life. (He is on the chart now--wasn't at first) Dr didn't want to test him for celiac because he isn't malnourished and small. Finally gave in since my DH has it and DS stools looked like DH's before he was diagnosed. Now my DD's look like that too!

Anyway, my point is that just because a kid looks healthy and may even be at the top of the growth chart doesn't mean he isn't a candidate for celiac.

One of my acquaintances has 2 children with celiac and another has siblings with celiac (she is an adult now) so i know that it is possible to have more than one child with celiac. Good luck getting a diagnosis. :) Kendra

2kids4me Contributor
2kids4me
Posted

I have 2 children and both are celiac. Myself and husband were tested and were neg, but I felt way better once I started eating gluten-free along with the children.

chrissy Collaborator
chrissy
Posted

3 of my children have celiac disease. we also know that one more of our children has the celiac gene.

key Contributor
key
Posted
  • Author

Chrissy,

Not to be nosey, but did your kids all have the biopsy done too? I hate that we just moved and don't have a pediatrician.

HOw is your daughter doing? Haven't seen any posts about her lately.

Monica

mbg98 Contributor
mbg98
Posted

Key,

You may not have a pediatrician now but once you get one you are so close to the University of MD celiac research center, you should try and get refered to there. Dr Fusano has been great with my 2 kids and everything is at your fingertips there! good luck

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VydorScope Proficient
VydorScope
Posted
My baby has celiac disease and so do I. He had the classic symptoms. My four year old has been having stomach aches, seems to not eat well and also has dropped on his growth curve. He is also very gassy and bloated alot. Yesterday he had a very pale stool and loose. He also has mouth ulcers and today he had a very small amount of reflux, this has never been a problem for him. He woke up lastnight with a tummy ache and today. I have been worrying that has a problem with gluten for about six months. My doctor where I moved from wasn't concerned. He thought he "looked" healthy!

I know I need to have him tested, but I hate that I don't know any doctors here. We just moved to Frederick, MD about a month ago. I hate seeing him sick and want him to get his blood drawn quickly. My gut tells me this is his problem, but I don't want to just take him off wheat, because I want our families to support us and not think I am overreacting. I guess it is possible that something else is bothering him, such as dairy or soy, but he used to be really big and now he is smaller then all his friends.

Does anyone have any advice?? My mom of course thinks that it isn't possible to have two kids with it. She doesn't even believe I have it.

THanks,

MOnica

Monica,

Who cares if you are over reacting, the risks assocatied with assuming NO celiac disease where he has celiac disease is to great to ignore. Do not bother with teh bisopy, just get teh blood test and see what it says. Its usally a very minor simple procedure that only takes a few mins in the office, then a week or 2 of waiting for the results. Do not put him on any gluten-free or gulten-restricted diet at all till your statisfied with the testing as that will effect the test results.

If the blood test comes back postive, they you put him onthe gluten-free diet for life and watch him get better and better. To me it sounds very likly that it is celiac disease , but I am not a doctor.

azmom3 Contributor
azmom3
Posted

Our son recently tested positive (by blood) for celiac. Now I'm looking at symptoms I've had my whole life and wondering if I have it, too. Also, my oldest son fits the description to a T, and my daughter has some of the symptoms, but not nearly as obvious as my other two. When I told my husband that I want us all to get tested and strongly suspect that both me and our older son have either celiac or gluten intolerance, he said something to the effect of "c'mon, how likely is it that we'd have that many people in our family all having it!"

Is there a statistic out there and is this fairly likely or are we just looking at the symptoms (many of which describe many illnesses/conditions) and trying to diagnose ourselves? We're getting tested regardless, but thought I'd throw this out there.

VydorScope Proficient
VydorScope
Posted
Our son recently tested positive (by blood) for celiac. Now I'm looking at symptoms I've had my whole life and wondering if I have it, too. Also, my oldest son fits the description to a T, and my daughter has some of the symptoms, but not nearly as obvious as my other two. When I told my husband that I want us all to get tested and strongly suspect that both me and our older son have either celiac or gluten intolerance, he said something to the effect of "c'mon, how likely is it that we'd have that many people in our family all having it!"

Is there a statistic out there and is this fairly likely or are we just looking at the symptoms (many of which describe many illnesses/conditions) and trying to diagnose ourselves? We're getting tested regardless, but thought I'd throw this out there.

Since its a genetic disorder, very likly :) Is any member of a fmaily has a postive test ofr celiac disease, then every direct blood relative should be tested.

azmom3 Contributor
azmom3
Posted
Since its a genetic disorder, very likly :) Is any member of a fmaily has a postive test ofr celiac disease, then every direct blood relative should be tested.

What exactly do you mean by "direct" I know my husband, me and our other kids will get tested. Should my brothers and sisters and our parents be tested? If this is so underdiagnosed adn 1 in a 100 people (at least) have it, why don't they screen for it automatically? Thanks for your feedback. :D

VydorScope Proficient
VydorScope
Posted
What exactly do you mean by "direct" I know my husband, me and our other kids will get tested. Should my brothers and sisters and our parents be tested? If this is so underdiagnosed adn 1 in a 100 people (at least) have it, why don't they screen for it automatically? Thanks for your feedback. :D

Yes they should, but convining them is often impossible... so far ONLY my mom has tested. heh.

In some countries they do automaticly test, but in USA its still considered "rare" and not worthy of routine testing. By direct I would look at both sets of grandparents and the aunts/uncles in addition to all the childern and both parents in the household with the celiac child. Going beyond that, with out clear symptons, is prbly over kill though some ppl say that everyone should be tested.

Look at it this way..

You child got hte genes for celiac disease from either you or your husband, possibly both. You two got them from your parents, meaning your sister (if you have one) very well could have them too.

chrissy Collaborator
chrissy
Posted

monica----not a nosey question-----one of my twins had a biopsy before we even suspected celiac, the other had a biopsy because she had positive blood work, and the 3rd one did not have a biopsy. we have a great ped gi that i have an awful lot of confidence in. he didn't feel the need to do a biopsy on molly after we had 3 kids test positive, and he doesn't feel it is necessary to do more biopsies-----just follow-up TTg tests to see how well they are staying gluten free.

tianna came home thursday. she looks so good---i didn't realize how sick she looked before.

azmom3 Contributor
azmom3
Posted
Yes they should, but convining them is often impossible... so far ONLY my mom has tested. heh.

In some countries they do automaticly test, but in USA its still considered "rare" and not worthy of routine testing. By direct I would look at both sets of grandparents and the aunts/uncles in addition to all the childern and both parents in the household with the celiac child. Going beyond that, with out clear symptons, is prbly over kill though some ppl say that everyone should be tested.

Look at it this way..

You child got hte genes for celiac disease from either you or your husband, possibly both. You two got them from your parents, meaning your sister (if you have one) very well could have them too.

Thanks so much!

ravenwoodglass Mentor
ravenwoodglass
Posted
If this is so underdiagnosed adn 1 in a 100 people (at least) have it, why don't they screen for it automatically? Thanks for your feedback. :D

Because we are a pharmacountry and celiac is controlled by diet and not pills. In answer to your origninal query both children and DH and I have it. I never showed up in blood work but everyone else had a positive blood test (note a low positive blood test for all many doctors would have said negative but I insisted on getting the lab results in my hands, one child was scoped and the rest of us were diagnosed through dietary compliance and challenge.

azmom3 Contributor
azmom3
Posted
Because we are a pharmacountry and celiac is controlled by diet and not pills. In answer to your origninal query both children and DH and I have it. I never showed up in blood work but everyone else had a positive blood test (note a low positive blood test for all many doctors would have said negative but I insisted on getting the lab results in my hands, one child was scoped and the rest of us were diagnosed through dietary compliance and challenge.

Thanks...I'll have to show this to him. By the way,what do the numbers mean exactly? There were 3 panels done for celiac...2 were less than 3, I think, and the other was 27. The high one was one of the ones "not specific to celiac" (I think that's the term my dr. used) Does any of that make sense and if so, do you know what it means? I didn't think of any questions to ask until after I left the doctore and started thinking about everything.

lbsteenwyk Explorer
lbsteenwyk
Posted
Our son recently tested positive (by blood) for celiac. Now I'm looking at symptoms I've had my whole life and wondering if I have it, too. Also, my oldest son fits the description to a T, and my daughter has some of the symptoms, but not nearly as obvious as my other two. When I told my husband that I want us all to get tested and strongly suspect that both me and our older son have either celiac or gluten intolerance, he said something to the effect of "c'mon, how likely is it that we'd have that many people in our family all having it!"

Is there a statistic out there and is this fairly likely or are we just looking at the symptoms (many of which describe many illnesses/conditions) and trying to diagnose ourselves? We're getting tested regardless, but thought I'd throw this out there.

Research in 2003 showed that 1 in 22 first degree relatives will have celiac disease. That means if you have celiac disease your child has about a 20% chance of having the disease as well. I know a woman who has 7 children - all tested positive for celiac disease through blood work.

azmom3 Contributor
azmom3
Posted
Research in 2003 showed that 1 in 22 first degree relatives will have celiac disease. That means if you have celiac disease your child has about a 20% chance of having the disease as well. I know a woman who has 7 children - all tested positive for celiac disease through blood work.

Thanks so much for the info!

taz sharratt Enthusiast
taz sharratt
Posted
Monica,

Who cares if you are over reacting, the risks assocatied with assuming NO celiac disease where he has celiac disease is to great to ignore. Do not bother with teh bisopy, just get teh blood test and see what it says. Its usally a very minor simple procedure that only takes a few mins in the office, then a week or 2 of waiting for the results. Do not put him on any gluten-free or gulten-restricted diet at all till your statisfied with the testing as that will effect the test results.

If the blood test comes back postive, they you put him onthe gluten-free diet for life and watch him get better and better. To me it sounds very likly that it is celiac disease , but I am not a doctor.

im with monica here, go with your gutt instinct.

key Contributor
key
Posted
  • Author

I will try and get him with a pediatrician tomorrow first thing. It stinks when you know that it may be wheat making him sick and you have to keep feeding it to him. It is like "here is some poison for you for breakfast!" Luckily he had a better day yesterday, but still complained of his tummy and didn't eat supper lastnight.

I will definitely try and get into University of MD. My husband is actually there doing a Fellowship in CArdiothoracic imaging for Radiology medicine. He commutes 40min. one way everyday.

Wow, 7 kids with it. That is amazing. I did have our older son tested with the blood test and his numbers were all zero. I requested to see the labs, because I didn't want it to be "borderline" and have them call it negative.

Thanks for the statistic about 20% of family members. Very interesting. I do think I heard this awhile ago, but had forgotten.

Chrissy,

Glad your daughter is doing better. I am sure you are relieved.

Monica

aorona Rookie
aorona
Posted

Myself and both of my kids as well as other family members all have celiac disease. It is genetic, so technically it's possible for all the children in the family to get celiac sometime in their lives.

  • 2 weeks later...
TCA Contributor
TCA
Posted
Thanks...I'll have to show this to him. By the way,what do the numbers mean exactly? There were 3 panels done for celiac...2 were less than 3, I think, and the other was 27. The high one was one of the ones "not specific to celiac" (I think that's the term my dr. used) Does any of that make sense and if so, do you know what it means? I didn't think of any questions to ask until after I left the doctore and started thinking about everything.

I know I"m late chiming in, but my daughter's been in the hospital and i"m behind on here. My son only had high IgG, which is nonspecific, but had a wonderful response to diet. If your kid is still symptomatic, I would try the diet and see if they improve.

As for the original question - both of my kids have it and we think I probably do too. We're all gluten-free now.

Smunkeemom Enthusiast
Smunkeemom
Posted

My grandfather, my mom, myself, and both my daughters have celiac disease. We suspect others in the family do to, but they are too stuborn to get tested. So far, myself and my daughters are the only ones 100% gluten free and guess what? we are the only ones who aren't sick :o (shocking isn't it) :rolleyes:

2Boys4Me Enthusiast
2Boys4Me
Posted

So far, Ty's the only one with celiac in our family. My husband, older son, my Mom and I were all tested and all negative. These were not gene tests, but I do know that I have HLA-B8 and HLA-B44 because about 15 years ago I signed up to be a bone marrow donor, and they did HLA-typing and they notified me of 3 HLA types. I think the other one was HLA-A9, I can't remember off hand. We don't know anyone else's HLA types in my family. I don't know anything about DQ (except they make good ice cream :P) so maybe since then the scientists have revised HLA labelling.

Open Original Shared Link

Above is the link that mentions HLA-B8 being related to Celiac.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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