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More Then 1 Child With Celiac?

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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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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.

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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

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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.

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

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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

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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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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.

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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.

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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.

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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

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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.

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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.

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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!

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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.

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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.

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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.

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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!

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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.

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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

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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.

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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.

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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:

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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.

http://www.enabling.org/ia/celiac/cel-hla.html

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

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    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
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    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.