My husband is celiac. We have 10 kids. Is it likely that any of the kids have celiac disease?

[HannahBick]

One of our 10 kids has dyslexia, another has ADD, three struggle with studies at school, another three have asthma and my oldest who does okay at school has always hated regular bread (chokes on it whenever he eats it). One of the three that struggles at school is severely learning disabled and has low muscle tone.

Only the father is gluten free and he and I seem to physically be the healthiest in the family. All the kids and myself eat gluten.

I was talking with a friend of mine who told me that it’s highly unlikely that all of my children would be celiac-free. I’ve taken more notice lately that some of them seem to show possible signs and symptoms of celiac (infrequent abdominal pain, fatigue, poor educational performance, etc.) so I asked the doctor at my last appointment about whether my kids could be Celiac given father’s family history but was told not to worry about it and let them be kids. None of them have obvious symptoms like my husband did so I was told to leave the issue alone. The doctor was quite condescending and rude about it saying that I needed to get a life and let the kids have one too because we could never afford the diet and it would create a lot of strife in the family. I don’t work at the moment so my spouse’s work is our primary source of income.

My husband doesn't want the kids screened for celiac either. He has been gluten free since diagnosed back in the 1960s and doesn’t like to talk about his past. He was extremely sick as a young child (severe abdominal distention and non-stop diarrheas), was told he'd outgrow it and his father was diagnosed 30 years later.

I think the kids should be screened. From what others have said, and what I’ve since learned from Beyond Celiac and University of Chicago, there is no question about it. They say the risk is only one in 22 so maybe I’m being a bit cynical.

My husband has told family and friends that he doesn’t want to burden the rest of us with his dietary restrictions, and thinks it’s already unfair on the rest of us that we have to keep separate items in the kitchen and watch the cross contamination so he wants the kids to enjoy their food and doesn’t like discussing the subject. I used to think that this was extremely thoughtful on his part but now I'm realising this could be to the detriment of our children and their futures. Two family friends have often come over and given my husband special treats from local gluten free bakeries but brought nothing for myself or the kids, which I think is saying something. I cannot understand why my husband and PCP would be so opposed to testing the kids when it seems to be an offical guideline and the complications are so serious. I don't want to see irreversible damage happen to my kids and I always thought my husband had my children's best interests at heart in this regard so I haven't paid any attention until recently, but I’m afraid to bring it up again given how hostile his remarks have been just from mentioning the long term risks like diabetes, osteoporosis, poor growth and lymphoma.

Only two children have never broken any bones and 4 have had more than one fracture.

How should I go about this? Any help would be appreciated. Is this normal? Is there any reason my husband would be like this? I thought he'd be the opposite. I think he knows something is going on but won't admit it. 

What is going on? Do you know anyone else had a similar experience (of a celiac spouse not wanting to test their sons or daughters)? It seems like I'm getting no support.

[tessa25]

If you lived in Colorado the screening would be free. But there's only a one in 50 chance of that.

[kareng]

6 hours ago, HannahBick said:

One of our 10 kids has dyslexia, another has ADD, three struggle with studies at school, another three have asthma and my oldest who does okay at school has always hated regular bread (chokes on it whenever he eats it). One of the three that struggles at school is severely learning disabled and has low muscle tone.

Only the father is gluten free and he and I seem to physically be the healthiest in the family. All the kids and myself eat gluten.

I was talking with a friend of mine who told me that it’s highly unlikely that all of my children would be celiac-free. I’ve taken more notice lately that some of them seem to show possible signs and symptoms of celiac (infrequent abdominal pain, fatigue, poor educational performance, etc.) so I asked the doctor at my last appointment about whether my kids could be Celiac given father’s family history but was told not to worry about it and let them be kids. None of them have obvious symptoms like my husband did so I was told to leave the issue alone. The doctor was quite condescending and rude about it saying that I needed to get a life and let the kids have one too because we could never afford the diet and it would create a lot of strife in the family. I don’t work at the moment so my spouse’s work is our primary source of income.

My husband doesn't want the kids screened for celiac either. He has been gluten free since diagnosed back in the 1960s and doesn’t like to talk about his past. He was extremely sick as a young child (severe abdominal distention and non-stop diarrheas), was told he'd outgrow it and his father was diagnosed 30 years later.

I think the kids should be screened. From what others have said, and what I’ve since learned from Beyond Celiac and University of Chicago, there is no question about it. They say the risk is only one in 22 so maybe I’m being a bit cynical.

My husband has told family and friends that he doesn’t want to burden the rest of us with his dietary restrictions, and thinks it’s already unfair on the rest of us that we have to keep separate items in the kitchen and watch the cross contamination so he wants the kids to enjoy their food and doesn’t like discussing the subject. I used to think that this was extremely thoughtful on his part but now I'm realising this could be to the detriment of our children and their futures. Two family friends have often come over and given my husband special treats from local gluten free bakeries but brought nothing for myself or the kids, which I think is saying something. I cannot understand why my husband and PCP would be so opposed to testing the kids when it seems to be an offical guideline and the complications are so serious. I don't want to see irreversible damage happen to my kids and I always thought my husband had my children's best interests at heart in this regard so I haven't paid any attention until recently, but I’m afraid to bring it up again given how hostile his remarks have been just from mentioning the long term risks like diabetes, osteoporosis, poor growth and lymphoma.

Only two children have never broken any bones and 4 have had more than one fracture.

How should I go about this? Any help would be appreciated. Is this normal? Is there any reason my husband would be like this? I thought he'd be the opposite. I think he knows something is going on but won't admit it. 

What is going on? Do you know anyone else had a similar experience (of a celiac spouse not wanting to test their sons or daughters)? It seems like I'm getting no support.

Of course they should be tested.  Not only does it sound like they have a lot of the symptoms , but the standard of care is to test all first degree relatives,

 

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"Celiac disease is an inherited autoimmune disease. The prevalence of celiac disease in 1st-degree relatives (children, parents, siblings) has been reported by numerous studies around the world to be significantly higher than in the general population, hence the need to screen every 1st-degree relative. The actual prevalence varies among the published studies, between 4-16%. Our own experience when testing for celiac disease in 1st-degree relatives is a prevalence around 5%, or 1:20. In 2nd-degree relatives (aunts, grandparents, uncles) a prevalence around 2.6%, or 1:39."

 

[erinmichelle]

As soon as my daughter was diagnosed at 7, her pediatrican suggested every first-line blood relative be tested since it is a genetic disease.  From her suggestion, we learned that her father, both her siblings and her paternal uncle all also have celiac disease.  My advice from my own experience would be to have all of your children tested.  In addition, if they do test negative but continue to eat gluten they should be tested every two years as the disease can be triggered at any time when you have a genetic predisposition.

[HannahBick]

3 hours ago, erinmichelle said:

As soon as my daughter was diagnosed at 7, her pediatrican suggested every first-line blood relative be tested since it is a genetic disease.  From her suggestion, we learned that her father, both her siblings and her paternal uncle all also have celiac disease.  My advice from my own experience would be to have all of your children tested.  In addition, if they do test negative but continue to eat gluten they should be tested every two years as the disease can be triggered at any time when you have a genetic predisposition.

Interesting. My husband has told others (who have asked us about whether any of the children are celiac) that celiac seems to more often be passed on to the children from the mother's side than the father's side. 

Also, is it normal for a teenager to dislike regular wonder bread? Or choke on it? My oldest says it's revolting and actually much prefers the gluten-free bread that his father has. He has never liked cake much either. I recall at his 5 year old birthday party (10 years ago) he refused to eat any of the wheat cupcakes I made for the occasion and instead just wanted an apple. Some people thought he had an eating disorder. But I'm thinking this have something to do with gluten intolerance or celiac? On the other hand he loves the gluten free cakes we make for his father. A lot of the kids complain about the texture of gluten free food. Most people (myself and my other kids included) love gluten-filled breads and cakes and would find it difficult to avoid, though I'm not so convinced that bread loves all of them back 

[pschwab]

Our son was diagnosed with celiac and we were told to have all first degree relatives tested as well. No one else currently has celiac, but we also did genetic testing and found that two siblings and his dad all have the gene. Therefore it came through the dad's side. I've personally never heard that it's more likely to come from the mother. I would highly recommend having all the kids tested. Ask your husband if he would have liked to have avoided feeling poorly as a child if someone could have/would have gotten him tested sooner. He may feel like eating gluten free is a burden he doesn't want for his children, but the numerous diseases they might face if they are celiac and continue to avoid diagnosis and continue to eat gluten would be much more burdensome.

[gilligan]

My brother found he had it about the same time I was diagnosed.  His son was diagnosed this summer 4 years after us.  Mom passed recently, but we are certain she had it now that we know much more about it.  A second cousin was diagnosed at 1 yr.  of age about 25 years ago.  My daughter was tested this summer but I'm doubtful of her negative diagnosis - she gave the family history and was told by the doctor before the test that he was sure it would be negative and not to worry about it.  I'm uncertain which test was actually administered, and she refuses to do it again unfortunately.  My point is to get your children tested.  I think the likelihood of a few of them testing positive is high. 

[HannahBick]

39 minutes ago, pschwab said:

Our son was diagnosed with celiac and we were told to have all first degree relatives tested as well. No one else currently has celiac, but we also did genetic testing and found that two siblings and his dad all have the gene. Therefore it came through the dad's side. I've personally never heard that it's more likely to come from the mother. I would highly recommend having all the kids tested. Ask your husband if he would have liked to have avoided feeling poorly as a child if someone could have/would have gotten him tested sooner. He may feel like eating gluten free is a burden he doesn't want for his children, but the numerous diseases they might face if they are celiac and continue to avoid diagnosis and continue to eat gluten would be much more burdensome.

He was diagnosed at age 4, very early on in life, so I don't think he is aware of the complications. His diagnosis was considered rare at the time, he had an excellent doctor but was told he'd outgrow it. I've also been told by said family friend that even if the kids test negative they may still benefit from going gluten free. People we meet are asking me if the kids have ever been screened and I have had to tell them no. It is embarrassing, since it has raised eyebrows among many other people, but my husband says the diet is too expensive for more than one person. He gets extremely ill from the smallest contamination and he has reinforced to the kids that they don't need the diet and to feel free to cook things that aren't gluten free. He wants to be their friend and hero, and feels that a lot of families with several gluten free children neglect those who don't need to be on a gluten free diet. I really believe at least a few of my kids are celiac now that I know more. I think I'm going to have find someone willing to screen all my kids. They are not going to like me, but teachers have complaining to me about the slow progress some of my children are making and how they're frequently having to use the bathroom during class. There are several other gluten free children in their schools and I think it's very unfair to them if mine are undiagnosed simply because my husband is set in his ways on this. 

A couple of questions... If the blood test comes back negative, should I still consider having my children scoped? I was told that bloods often come back falsely negative for family members and the biopsy is the gold standard. Also should I trial a gluten free diet if they are negative?

[kareng]

1 hour ago, HannahBick said:

Interesting. My husband has told others (who have asked us about whether any of the children are celiac) that celiac seems to more often be passed on to the children from the mother's side than the father's side. 

Also, is it normal for a teenager to dislike regular wonder bread? Or choke on it? My oldest says it's revolting and actually much prefers the gluten-free bread that his father has. He has never liked cake much either. I recall at his 5 year old birthday party (10 years ago) he refused to eat any of the wheat cupcakes I made for the occasion and instead just wanted an apple. Some people thought he had an eating disorder. But I'm thinking this have something to do with gluten intolerance or celiac? On the other hand he loves the gluten free cakes we make for his father. A lot of the kids complain about the texture of gluten free food. Most people (myself and my other kids included) love gluten-filled breads and cakes and would find it difficult to avoid, though I'm not so convinced that bread loves all of them back 

I would like to see the studies he is referencing that say that Celiac is associated with the female dna.  Never heard of that.  Honestly, I think he is making that up.

now, he was diagnosed so long ago, before they had the blood tests, maybe he doesn’t have Celiac?

I know it is hard to raise any number of kids alone, but you must protect them.  They sound like they actually have symptoms of Celiac and you would want to look into that, even if he didn’t have Celiac.

[RMJ]

The only way it could come from the mother more often would be if it was x-linked and always came from the mother - and I have never heard that for celiac.

[Sienna2013]

I'd suggest screening them all (as noted above, screening all first-degree relatives is the standard of care when someone is diagnosed) *and* going gluten-free whatever the results. Odds are that one or more has active celiac (it can cause behavioral and physical symptoms like those you describe), and it will be much safer for the celiacs in the household for the whole house to be gluten-free. As long as your gluten-free diet is mostly based on whole foods (meat, fish, veg, etc.) and not on gluten-replacement foods (gluten-free pasta, gluten-free bread), there's no real downside for those who tolerate it fine, and a big upside for those who don't. 

(Our household: 2 celiac kids; mom and dad each with a different celiac gene but neither had elevated TTG-IGA when we were all screened when kid1 was diagnosed; mom has an autoimmune condition so depending on what you read should be off gluten anyway; whole house is gluten-free because both kids react strongly to even tiny cross-contamination, and we want home to be a haven for them.)

[Beverage]

The children should absolutely be screened (the blood antibody complete screening panel) immediately, regardless if symptoms or not.  Some guidelines say that they should be screened annually for the rest of their lives.   I have read that the medical community is now expanding from 1st degree relatives getting screened to 3rd degree.  Any diagnosed celiac that doesn't want their own children screened (just a simple blood test) should really seek counseling.  Sorry to sound tough, but this is a killer disease.  I went undiagnosed for over 40 years, absolutely no intestinal symptoms, and I cry thinking how much better health I would be in now if I'd found out sooner.

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[HannahBick]

I don't see how any diagnosed celiac wouldn't want their own children screened. My husband is the first person I know of to be like this. He has made it clear that only one person in the family can afford to be gluten free. Last week hubby and I met with a family where three out of the four need to be gluten free. Before we went, he asked his kids to bake a non-gluten free fruit cake for the non-gluten-free family member we were visiting. I asked what about the other three family members who are gluten-free. He insisted that the non-gluten-free people need to feel included and special as well. Needless to say, I also took some prepackaged gluten free treats along for the entire family (which he didn't even want me to do).

I don't think I'll win on this one. Both my PCP and husband are against me. PCP told me to try them on a gluten free diet if I think it's bothering them. My husband definitely has celiac disease, it was a very severe classic case when he was young. He had a flat biopsy on gluten when he was little, normal biopsy off gluten for a year and then reintroduced gluten and had a flat biopsy again. He still gets very sick when he eats something with gluten in it. He often resents his dietary restrictions and feels left out but financially it is the only way we can cope at the moment. We have to get the least expensive bread possible for everyone else to help keep costs down. 

The last thing my husband wants to do is screen the kids. He is adamant that they do not need to be screened if they don't have symptoms. None of the kids are suffering like he did. If we were better off money wise, he would consider making the house mostly gluten free but let the kids eat gluten when out and about but wouldn't this obfuscate their diagnosis?

[kareng]

12 minutes ago, HannahBick said:

I don't see how any diagnosed celiac wouldn't want their own children screened. My husband is the first person I know of to be like this. He has made it clear that only one person in the family can afford to be gluten free. Last week hubby and I met with a family where three out of the four need to be gluten free. Before we went, he asked his kids to bake a non-gluten free fruit cake for the non-gluten-free family member we were visiting. I asked what about the other three family members who are gluten-free. He insisted that the non-gluten-free people need to feel included and special as well. Needless to say, I also took some prepackaged gluten free treats along for the entire family (which he didn't even want me to do).

I don't think I'll win on this one. Both my PCP and husband are against me. PCP told me to try them on a gluten free diet if I think it's bothering them. My husband definitely has celiac disease, it was a very severe classic case when he was young. He had a flat biopsy on gluten when he was little, normal biopsy off gluten for a year and then reintroduced gluten and had a flat biopsy again. He still gets very sick when he eats something with gluten in it. He often resents his dietary restrictions and feels left out but financially it is the only way we can cope at the moment. We have to get the least expensive bread possible for everyone else to help keep costs down. 

The last thing my husband wants to do is screen the kids. He is adamant that they do not need to be screened if they don't have symptoms. None of the kids are suffering like he did. If we were better off money wise, he would consider making the house mostly gluten free but let the kids eat gluten when out and about but wouldn't this obfuscate their diagnosis?

Obviously, you have a lot more issues with him than just this.  I feel bad for the kids as an early diagnosis could be so helpful to their current and future health.  

If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life, I don't care what my husband thinks.  

You can eat gluten-free without buying expensive gluten-free packaged products.  Meat, beans, veggies, fruit, dairy , eggs, rice, Chex cereals, plain potato chips, etc are al naturally gluten-free.  It might take a change in what you fix, but, except for gluten-free pasta, my hub and I eat mostly like that. I say potato chips and Chex because you can make some great chicken nugget things with them.

you are right that eating gluten-free usually makes the Celiac tests negative.  But if you can't or won't test your kids, maybe it is best to make them gluten-free to stop some of the damage.  In a few years, as adults, they can get tested .  There are tests for Celiac being developed that don't require eating gluten or much gluten.

 

 

[Beverage]

I had no symptoms.  I'm left with permanent kidney damage.  You also need a new doctor.  All this is contrary to everything we know.

[HannahBick]

On 18/04/2018 at 2:09 PM, Beverage said:

I had no symptoms.  I'm left with permanent kidney damage.  You also need a new doctor.  All this is contrary to everything we know.

I'm reluctant to change doctors since my husband last year was diagnosed with suspected Lyme disease by our PCP. No other doctors in our area think that Lyme disease is legitimate. He had been complaining of fibromyalgia, joint pain and unexplained recurrent stomach cramps for the past five years and is currently being treated with antibiotics and doing better but still having issues, so I don't want to get off side with our family doctor on this one. Is there a way to test the kids for celiac without a doctor? I might consider this route.

[Sienna2013]

PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia. 

[squirmingitch]

3 hours ago, Sienna2013 said:

If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia. 

This was my first thought too.

[HannahBick]

6 hours ago, Sienna2013 said:

PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia. 

PCP has never questioned my husband on gluten exposure. He is very careful about cross contamination, has a separate toaster, cooking utensils and butter/jam pots but we do live in a gluten-full house for myself and the kids who bake regular scones, cakes and (occasionally) raisin bread. I would have thought his exposures would be minimal, since we clean up very carefully after ourselves.

Thought I should add that he went in for an EGD late last year and his biopsies and bloods came back normal so the GI said he was managing his celiac condition extremely well. 

The antibiotic tablets do seem to have helped him a bit, he has less abdominal pain, fibromyalgia and joint pain than before.

Is it really possible that gluten could be causing these symptoms despite normal blood and biopsy results? He was told by the GI specialist that everything he is doing is fine.

[Beverage]

Hi.  Anything that goes in the eyes, ears, nose, and mouth ends up in the digestive tract.  Flour in the air from making scones and cake stays in the air for days, which then gets inhaled and down it goes, , not to mention everything it settles on.  It's hard enough to make sure no cross contamination happens in preparing food, but it really is not safe for a Celiac be in the same air space with non-gluten-free flour.

[HannahBick]

Is there a way to test the kids for celiac without a doctor?

[kareng]

8 hours ago, HannahBick said:

Is there a way to test the kids for celiac without a doctor?

i think that in some states, you can go to labs, like Quest Diagnostics and order your own blood work.  could get pretty expensive with 10 kids because insurance usually won't pay unless a doctor orders it.  but you could call your local place and see if its even possible.

There are places you can mail in stool, hair, etc - but those test cost at least as much as the legitimate blood tests & have no accepted scientific basis.

[tessa25]

I once asked the lab I use and you have to be over 18 to order your own tests.

[HannahBick]

I'm getting the kids tested. I'll pay for it if I need to. I just feel like we're being socially irresponsible by not getting them screened. It's not fair on other school students who are following a gluten free diet and have few options in the cafeterias due to so few celiacs knowing they have the condition. The more I learn, it seems like the undiagnosed celiacs are the ones who are really hurting the rest of society. Couldn't believe it when I heard that more than 80% are undiagnosed. My husband (who is going to hit the roof when he finds out) recently told a friend of ours that better diagnosis is the reason more celiac disease exists. Correct me if I'm wrong but it seems like a lot more kids are sick than they used to be.

[Beverage]

I'm so glad you are getting them tested, but sorry it has to be behind his back. However, this is such a serious problem, it has to be done.  He can hit the roof all he wants, but he will still be wrong about it, his choice to remain ignorant about the facts.

Better diagnosis is not the reason more celiac disease exists, it's that more of it is getting found, we know about more of it, it was always there.  Doctors are finally slowly becoming aware that it's not just those with intestinal symptoms.   We are lucky to be here now when some doctors are more aware and that awareness is growing all the time. 

Good luck.  Prayers to you for your strength and courage and hopefully a positive outcome.