• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
7 7
HannahBick

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

Rate this topic

Recommended Posts

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. :(

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites
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,

 

https://www.cureceliacdisease.org/faq/what-is-the-prevalence-for-others-in-my-family-to-have-celiac-disease-since-ive-been-diagnosed-with-it-2/

 

"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."

 

  • Like 1

Share this post


Link to post
Share on other sites

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.

  • Like 1

Share this post


Link to post
Share on other sites
Posted (edited)
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 :P

Edited by HannahBick

Share this post


Link to post
Share on other sites
Ads by Google:


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.

  • Like 1

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites
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?

Share this post


Link to post
Share on other sites
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 :P

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.)

Share this post


Link to post
Share on other sites

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.

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

 

 

  • Upvote 2

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites
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.

 

 

  • Like 3
  • Upvote 1

Share this post


Link to post
Share on other sites

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.

  • Like 2

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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. 

  • Upvote 4

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites
Posted (edited)
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.

Edited by HannahBick
Added details about EGD

Share this post


Link to post
Share on other sites

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.

  • Like 1
  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

7 7

  • Who's Online   11 Members, 2 Anonymous, 1,178 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 05/24/2018 - England is facing some hard questions about gluten-free food prescriptions for people with celiac disease. Under England’s National Health Plan, people with celiac disease are eligible for gluten-free foods as part of their medical treatment. 
    The latest research shows that prescription practice for gluten-free foods varies widely, and often seems independent of medical factors. This news has put those prescribing practices under scrutiny.
    "Gluten free prescribing is clearly in a state of flux at the moment, with an apparent rapid reduction in prescribing nationally," say the researchers. Their data analysis revealed that after a steady increase in prescriptions between 1998 and 2010, the prescription rate for gluten free foods has both fallen, and become more variable, in recent years. Not only is there tremendous variation in gluten free prescribing, say the researchers, “this variation appears to exist largely without good reason…”
    Worse still, the research showed that those living in the most deprived areas of the country are the least likely to be prescribed gluten-free products, possibly due to a lower rate of celiac diagnosis in disadvantaged groups, say the researchers.
    But following a public consultation, the government decided earlier this year to restrict the range of gluten free products rather than banning them outright. As research data pile up and gluten-free food becomes cheaper and more ubiquitous, look for more changes to England’s gluten-free prescription program to follow. 
    Read more about this research in the online journal BMJ Open.

    Jefferson Adams
    Celiac.com 05/23/2018 - Yes, we at Celiac.com realize that rye bread is not gluten-free, and is not suitable for consumption by people with celiac disease!  That is also true of rye bread that is low in FODMAPs.
    FODMAPs are Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. FODMAPS are molecules found in food, and can be poorly absorbed by some people. Poor FODMAP absorption can cause celiac-like symptoms in some people. FODMAPs have recently emerged as possible culprits in both celiac disease and in irritable bowel syndrome.
    In an effort to determine what, if any, irritable bowel symptoms may triggered by FODMAPs, a team of researchers recently set out to compare the effects of regular vs low-FODMAP rye bread on irritable bowel syndrome (IBS) symptoms and to study gastrointestinal conditions with SmartPill.
    A team of researchers compared low-FODMAP rye bread with regular rye bread in patients irritable bowel syndrome, to see if rye bread low FODMAPs would reduce hydrogen excretion, lower intraluminal pressure, raise colonic pH, improve transit times, and reduce IBS symptoms compared to regular rye bread. The research team included Laura Pirkola, Reijo Laatikainen, Jussi Loponen, Sanna-Maria Hongisto, Markku Hillilä, Anu Nuora, Baoru Yang, Kaisa M Linderborg, and Riitta Freese.
    They are variously affiliated with the Clinic of Gastroenterology; the Division of Nutrition, Department of Food and Environmental Sciences; the Medical Faculty, Pharmacology, Medical Nutrition Physiology, University of Helsinki in Helsinki, Finland; the University of Helsinki and Helsinki University, Hospital Jorvi in Espoo, Finland; with the Food Chemistry and Food Development, Department of Biochemistry, University of Turku inTurku, Finland; and with the Fazer Group/ Fazer Bakeries Ltd in Vantaa, Finland.
    The team wanted to see if rye bread low in FODMAPs would cause reduced hydrogen excretion, lower intraluminal pressure, higher colonic pH, improved transit times, and fewer IBS symptoms than regular rye bread. 
    To do so, they conducted a randomized, double-blind, controlled cross-over meal study. For that study, seven female IBS patients ate study breads at three consecutive meals during one day. The diet was similar for both study periods except for the FODMAP content of the bread consumed during the study day.
    The team used SmartPill, an indigestible motility capsule, to measure intraluminal pH, transit time, and pressure. Their data showed that low-FODMAP rye bread reduced colonic fermentation compared with regular rye bread. They found no differences in pH, pressure, or transit times between the breads. They also found no difference between the two in terms of conditions in the gastrointestinal tract.
    They did note that the gastric residence of SmartPill was slower than expected. SmartPill left the stomach in less than 5 h only once in 14 measurements, and therefore did not follow on par with the rye bread bolus.
    There's been a great deal of interest in FODMAPs and their potential connection to celiac disease and gluten-intolerance. Stay tuned for more information on the role of FODMAPs in celiac disease and/or irritable bowel syndrome.
    Source:
    World J Gastroenterol. 2018 Mar 21; 24(11): 1259–1268.doi:  10.3748/wjg.v24.i11.1259

    Jefferson Adams
    Celiac.com 05/22/2018 - Proteins are the building blocks of life. If scientists can figure out how to create and grow new proteins, they can create new treatments and cures to a multitude of medical, biological and even environmental conditions.
    For a couple of decades now, scientists have been searching for a biological Rosetta stone that would allow them to engineer proteins with precision, but the problem has remained dauntingly complex.  Researchers had a pretty good understanding of the very simple way that the linear chemical code carried by strands of DNA translates into strings of amino acids in proteins. 
    But, one of the main problems in protein engineering has to do with the way proteins fold into their various three-dimensional structures. Until recently, no one has been able to decipher the rules that will predict how proteins fold into those three-dimensional structures.  So even if researchers were somehow able to design a protein with the right shape for a given job, they wouldn’t know how to go about making it from protein’s building blocks, the amino acids.
    But now, scientists like William DeGrado, a chemist at the University of California, San Francisco, and David Baker, director for the Institute for Protein Design at the University of Washington, say that designing proteins will become at least as important as manipulating DNA has been in the past couple of decades.
    After making slow, but incremental progress over the years, scientists have improved their ability to decipher the complex language of protein shapes. Among other things, they’ve gained a better understanding of how then the laws of physics cause the proteins to snap into folded origami-like structures based on the ways amino acids are attracted or repelled by others many places down the chain.
    It is this new ability to decipher the complex language of protein shapes that has fueled their progress. UCSF’s DeGrado is using these new breakthroughs to search for new medicines that will be more stable, both on the shelf and in the body. He is also looking for new ways to treat Alzheimer’s disease and similar neurological conditions, which result when brain proteins fold incorrectly and create toxic deposits.
    Meanwhile, Baker’s is working on a single vaccine that would protect against all strains of the influenza virus, along with a method for breaking down the gluten proteins in wheat, which could help to generate new treatments for people with celiac disease. 
    With new computing power, look for progress on the understanding, design, and construction of brain proteins. As understanding, design and construction improve, look for brain proteins to play a major role in disease research and treatment. This is all great news for people looking to improve our understanding and treatment of celiac disease.
    Source:
    Bloomberg.com

    Jefferson Adams
    Celiac.com 05/21/2018 - Just a year ago, Starbucks debuted their Canadian bacon, egg and cheddar cheese gluten-free sandwich. During that year, the company basked in praise from customers with celiac disease and gluten-sensitivity for their commitment to delivering a safe gluten-free alternative to it’s standard breakfast offerings.
    But that commitment came to an ignoble end recently as Starbucks admitted that their gluten-free sandwich was plagued by  “low sales,” and was simply not sustainable from a company perspective. The sandwich may not have sold well, but it was much-loved by those who came to rely on it.
    With the end of that sandwich came the complaints. Customers on social media were anything but quiet, as seen in numerous posts, tweets and comments pointing out the callous and tone-deaf nature of the announcement which took place in the middle of national Celiac Disease Awareness Month. More than a few posts threatened to dump Starbucks altogether.
    A few of the choice tweets include the following:  
    “If I’m going to get coffee and can’t eat anything might as well be DD. #celiac so your eggbites won’t work for me,” tweeted @NotPerryMason. “They’re discontinuing my @Starbucks gluten-free sandwich which is super sad, but will save me money because I won’t have a reason to go to Starbucks and drop $50 a week,” tweeted @nwillard229. Starbucks is not giving up on gluten-free entirely, though. The company will still offer several items for customers who prefer gluten-free foods, including Sous Vide Egg Bites, a Marshmallow Dream Bar and Siggi’s yogurt.
    Stay tuned to learn more about Starbucks gluten-free foods going forward.

    Jefferson Adams
    Celiac.com 05/19/2018 - Looking for a nutritious, delicious meal that is both satisfying and gluten-free? This tasty quinoa salad is just the thing for you. Easy to make and easy to transport to work. This salad of quinoa and vegetables gets a rich depth from chicken broth, and a delicious tang from red wine vinegar. Just pop it in a container, seal and take it to work or school. Make the quinoa a day or two ahead as needed. Add or subtract veggies as you like.
    Ingredients:
    1 cup red quinoa, rinsed well ½ cup water ½ cup chicken broth 2 radishes, thinly sliced 1 small bunch fresh pea sprouts 1 small Persian cucumber, diced 1 small avocado, ripe, sliced into chunks Cherry or grape tomatoes Fresh sunflower seeds 2 tablespoons red wine vinegar  Kosher salt, freshly ground pepper Directions:
    Simmer quinoa in water and chicken broth until tender.
    Dish into bowls.
    Top with veggies, salt and pepper, and sunflower seeds. 
    Splash with red wine vinegar and enjoy!