Prevent Celiac Disease? New Study Explores Potential Early Intervention

Much to my grandmother’s chagrin, I’m nowhere close to having children.

cookie sandwiches, the new baby food?

Much to my chagrin, this new study on the prevention of celiac disease won’t be finished before my prime child-bearing years are over.

Study to prevent celiac disease, you ask? Indeed. A new Dutch study is taking a look at the so-called “window of opportunity,” in which it might (might might might) be possible to keep celiac disease from taking hold in an infant.

Over the years experts have waffled back and forth on whether or not it’s prudent to feed infants gluten. Is it better to expose their systems to the potential toxin, so that they can build a resistance to it? Or is it better to shield them until their digestive and immune systems are stronger?

One thing that is certain: the rate of celiac disease is on the rise, and increased diagnosis / heightened awareness doesn’t explain all the new cases. It isn’t just that we’re better at finding celiac; it’s also more common now than it was 20 years ago. This points to some sort of trigger — and if we can find the trigger, we can better avoid it (at least, theoretically).

The Leiden University Medical Center in the Netherlands has launched a study that should help do just that. The study has two parts:

  1. Two groups of Swedish children will be followed until age 12. One group was born when prevailing advice involved sheltering infants from gluten. The other was born more recently, when introducing gluten into the diets of 4-6 month-olds was encouraged.
  2. 1,000 infants who each have a first-degree relative with celiac disease will be followed. Those whose genomes show indicators of potential celiac disease will be split into two groups, each receiving a different amount of gluten in their daily diets from 4-6 months. All the infants will be tracked for indications of celiac disease / for antibodies, and their mothers’ breastmilk will be tracked for gluten.

This is really promising research, and I’m looking forward to seeing the answers 12 years from now. In the meantime, I’m curious: those of you who have small children, did you purposefully expose them to or shelter them from gluten when they were babies? Do you think it made a difference?

33 thoughts on “Prevent Celiac Disease? New Study Explores Potential Early Intervention”

  1. Found your article of interest, you should put more click ons, rather than having Google, like The Leiden University, also include name sof specialists/consultants involved in the study. With your consent, I will put some comments in my next Newsletter 45 February 2011, but our members like to click on all relevant stories. We do have a growing number of children joining our Group and next month we have been invited to meet the Celiac Consultants at The Royal Alexandra Children’s Hospital in Brighton UK, will report on that visit in Newsletter 46.
    The article in our web site about the Immune System was actually put together by me, as I found it difficult to get a simple layman’s article about such a complex topic.
    Keep up the good work, let me know what you think of what we are doing.

  2. Emily, cookie sandwiches? Sounds…delicious!

    On a related note, there’s been conflicting studies on the moms eating peanut butter during pregnancy. One study claims to show it might increase chances of baby having a peanut allergy, and another one debunked it.

  3. Kay, the only thing that could make that sandwich more delicious is if you threw in some chocolate frosting and grilled the whole thing up.

    It’s crazy and terrifying how many conflicting reports there are on in utero nutrition; I can’t imagine the stress of being pregnant and worrying about every bite.

    Don, thanks for your kind words and your suggestions. Please do share this story with the rest of your group and anyone else who you think might enjoy it — being celiac can certainly be isolating, and it’s always great to read about celiac communities across the globe.

  4. I have been gluten-free for almost 20 years. My 2 kids have been ingesting gluten since they have been eating. They were both tested about 1 1/2 yrs ago for celiac, and both tested negative. However, BOTH kids are allergic to peanuts and tree nuts, and neither my husband or I have nut allergies in our families. I did NOT eat peanut butter or any nuts during either pregnancy. So for us, there is no correlation…

  5. My 4 year old has been diagnosed in the last year with Celiac disease. Since no one else in my family has it, it never occurred to me to shelter or encourage gluten in her diet at a young age. When I think about what I fed her, though, I can say that she was not exposed to much gluten in her diet until she was about 18 months. With #2 on the way, maybe I’ll do the opposite and conduct my own “study”.

  6. The University of Maryland is doing a similar study that will follow the children until they are 18 (I think it is 18, don’t quote me on that!). I’m sure they will put out a series of reports throughout the course of time.

    In the meantime, can’t someone take a look back at what typical baby diets were when the rate of celiac disease was known to be lower? What were babies being fed 50 years ago? 100 years ago? That might help us have some kind of clue while we wait for these studies to evolve.

  7. What they need to study are vaccines as potential triggers.

    So many parents report that their children–with or without autism–develop long-term intestinal problems (that are only later diagnosed as gluten-related) immediately following vaccines, particularly those vaccines given between 12-24 months.And we know from many, many studies that vaccines can and do trigger autoimmune disorders.

    Our child was diagnosed by the dermatologist. We had taken him there for a rash that was an obvious vaccine reaction at a time when he was only getting breastmilk for food. The rash at the time did not respond when I cut all major allergens (including gluten) out of my diet–but years later, was diagnosed as DH, and did respond to gluten elimination. The dermatologist said that he got an amazing amount of business from vaccine reactions, and that he saw a fair amount of vaccines triggering autoimmune disorders INCLUDING CELIAC.

    It’s also interesting that the rise in celiac diagnosis, like autism, is directly parallel to the rise in the number of vaccines given to children by the age of 22. Both autism and celiac disease were considered to be 1/10,000 only a few decades ago (when we only received 5-7 vaccines TOTAL–now there are 36 by the age of 2). And there have been no studies on the long-term effects of multiple vaccines.

  8. Also, adults are now receiving many vaccines, including yearly flu shots (90% of which contain thimerosal), whereas 30 years ago, one would only receive a tetanus booster every 10 years.

  9. I ate a ton of peanut butter while pregnant because it was one of the only things I could eat and my child was born with the worst cradle cap and allergic to peanuts (has since outgrown it at 10). All 3 kids are gluten free and it has cured severe digestive problems, severe muscle pain (myositis) severe fatigue and exczema. Also, one child can not have soy or milk.

  10. My gluten allergy began with the onset of autoimmune thyroid disease when I was well into my 20’s. I also developed several food allergies at that time when I had never been allergic to any foods prior. My self and my son, who has a dairy allergy and has since we first began introducing dairy into his diet at about age 1 after solely breastfeeding, are the only ones in our family with known food allergies. I think there might be multiple causes.

  11. Why not test infants early for the Celiac disease gene? Are we now saying even if you have an auto-immune disease like celiac, the timing of when gluten is introduced in the body can erase Celiac disease? Seems to be counter intuitive to me.

  12. I agree with the ‘Gluten Free’ post above. Is it truly possible to erase this disorder. I do not see how it is possible. I can see where not giving and infant gluten can greatly improve many aspects of their bodies in the long run. However I do not think it can cut out the disorder if they inherited it. My great Aunt has Celiac. I have Celiac (diagnosed at age 25!) and my son has Celiac (diagnosed age 15months and is now 4 yrs old). My daughter has never has gluten (is 2 yrs old) and has bronchial malacia and chronic pneumonia. I think it is just a glitch in our bodies, and that is okay. Maybe we should change what the world, the restruants and grocery stores consider ‘healthy’ food…get rid of the wheat and go back to primal eating…just sayin’ It sounds easier to do that than to reverse Celiac.

    I am very interested to see what results this study produces.

  13. it would be wonderful if we could prevent it. my son was tested for the gene at just 4 months old. he has 1/2 of one of the 3. we are keeping him gf for now, and his stroller snacks are rice mums. he adores them.

  14. I just have to say, which came first the Chicken or the Egg. I think the smart thing to do is from the beginning of life, find out if one has the DNA for Celiac Disease. I have Autoimmune Thyroid, called Hashimotos, along with Autoimmune Adrenal Gland, called Addison’s. but I believe it was triggered from Autoimmune Celiac Disease, which went undiagnosed all my life. It was only recently that I found out that I have the DNA for Autoimmune Celiac Disease. From the time I was little, I suffered with indigestion and diarrhea along with acid reflex, but no doctor ever thought about testing me for Celiac Disease or for the DNA. At age 52, I finally put the pieces together myself from books, and the internet and forced the issue for me to be tested for Celiac, and guess what low and behold I was. Oh, I had to force the issue for DNA to be tested too , which was also positive. So, if I had been tested early on for the Celiac DNA, could I have prevented the other Autoimmune diseases that I suffer with that came on in my 40s. I have a feeling that would be a yes, but that is only my gut level feeling.

  15. I have been thinking a lot about this since my daughter was diagnosed gluten intolerant. Since she was a baby we have been looking for answers. Like the other post about cheerios and goldfish there are also baby cereals. My daughter could only tolerate the rice cereal. Also there was baby yogurt with cereal in it and she could never eat it I would like to go back and check out the baby formula too. She was on a special formula for allergic babies but I wonder if it was gluten free or not.

  16. My celiac came year after type one diabetes. There seems to be a high correlation between those two medical conditions too. These didn’t show until high school for me but I know of a number of people who have the two from different age groups, being in the 3-5, teenage, and diagnosed in early 20s. The only question I have for doctors is when did I really get celiacs? They found out by placing my blood work for diabetes in the wrong place! I question if that is what brought on the diabetes.

  17. For those of us who live with this Celiac daily know that we always think about the would have could have should haves. Our son at age 24 had a car accident and this is what triggered his body to have Celiac. Sounds crazy! We had genetic testing paid for it out of our own pockets at Entero labs. What we found was I had one gene the 4 and my husband has the 8, our son has both so this trauma caused his body to malfunction he lost 25 lbs in 2 wks. We found an MD NP immunioligist who helped us put him back together with specific supplements and for sure 100% gluten free diet he is now a functioning adult. When he was a child he was severly allergic to milk. It didn’t make him sick he became hyper! I also have 3 other children ages 22,24,28 who are undergoing. The genetics testing so they can be aware of future symptoms. They most eat gluten free as a result of seeing what it did to their brother. I agree we need to go back to eating organic veggies and for those who eat meat also organic meats. We had our own garden and made our own breads,cookies etc… I think if we canthinkclearly about what the tests reveal and not live in the fear of the test it is vey useful. Another test is through they do DNA analysis and give you updates on studies being done for particular conditions. Very helpful for those who are willing to really take responsibility for your own health! FYI I was diagnosed with CFS,Fibromyalgia,IBS, and pernicious anemia and was told to get my affairs in order that was 71/2 hrs ago. I politely told them thank you for the diagnosis and then went to work finding alternative methods. Which have saved my life! I’ve been undisguised with all of these conditions. Had I known that I was severly gluten intolerant 25 yrs.ago I WOULD NEVER have had to gone thru this nightmare! Don’t be passive about your health!

  18. I have Type 1 diabetes as well as Celiac. I have had DM since I was 9 years old and am now 39. I was diagnosed with celiac 2 years ago but just by chance. I was having trouble swallowing so had a scope done and they discovered it then. I never would have guessed I had Celiac. I never had bowel issues at all. This study will be interesting. I have 3 children all have been tested and are negative. Thank heavens.

  19. I have 4-year old boy/girl twins who basically ate a very similar diet from birth. They were breastfed the same length of time, started solids at the same time, etc. My daughter was diagnosed w/CD shortly after she began to eat “regular” (aka not baby food) food when she was 17 mos old. Her illness was of a RAPID onset to the point that the suspected culprit was cancer. Fortunately she was diagnosed with CD at an early age and has been the picture of health since beginning a strict GF diet. We could not have predicted her diagnosis at all since all immediate and some extended family members have since been tested. No one else has been diagnosed including her twin brother.

    I am very curious to see where this study will lead. I have also been searching for other twins who have CD (especially one and not the other.) Mine are obviously fraternal and not identical but it has always seemed so odd to me. . .same womb, same environment, same upbringing, same diet and the twin who is CD-free is a gluten addict!

  20. Like Cathi, I went undiagnosed until I was in my 50’s. I suffered from severe acid reflux and eventually developed a bleeding ulcer before they discovered Celiac Disease as the culprit. Unfortunately, side effects like neuropathy and joint pain had already resulted. GF diet eliminated joint pain.
    I wonder if Celiac is really on the rise, or if there were simply many of us who went undiagnosed for many years. I was blessed with parents were great about serving a diet rich in fresh vegetables and simply prepared meats. Fast foods were not a factor in diets when I was a child, and I have to think this played a role, too. I was very thin (89 lbs in college), a bit like Twiggy, but nobody even thought of testing for Celiac. I had arthritis in my 20’s (NOT), allergies, and other problems. Diagnosis changed my life, but the possibility was not explored until I visited my doctor and told him my stomach was literally killing me.
    I encourage parents who have children with “touchy” tummy issues to explore the possibility of Celiac. ..with the knowledge that the blood testing for gluten allergies may not be conclusive.
    Mary Anne

  21. I, too was not diagnosed until my 50s, but in retrospect probably have had the problem most of my life. I have also had asthma and dust, mold and pollen allergies since my youyh. The onset of chronic anemia, significant weight loss, and severe abdominal pain were what got everyone looking for “any” plausable cause. In 6-9 months, a strict GF, dairy-free diet got me feeling better than I have ever felt.
    My children were all allergic to milk. My 10-month-old grandson is on a GF diet (so far) and is still breast fed. Rice cereal is the only grain that has been introduced to date, but for “stroller snacks” Baby Mum-Mums are a hit! His parents are not planning a GF diet for ever — rather, a diet rich in fruits and veggies, meats and eggs, produced organically on a family farm.
    Can’t wait to follow the results of the study. Ann

  22. My now 8 yo has Celiac (I’m the genetic carrier and my youngest also has the gene)…

    We introduced solid foods beginning around 4 mo… By 9 mo of age we had a failure to thrive situation. My plump (9 lb 7 oz) newborn only reached 16 lbs 2 oz by 12 months.

    She also had ezcema and GI issues…

    She was 5 before we had a diagnosis.

    So in our case, eating a normal diet didn’t change the outcome… If I ever have another child, I will avoid gluten and test for the gene… Maybe it’ll make a difference.

  23. My sister and I both have celiac, we did not give any of our children gluten until they were over one years old. (5 children in total) so far, so good…. they have all been able to tolerate it.

  24. No one in our family ever had or heard of celiac disease prior to my son getting it. As a baby, I did as the doctors instructed me to do ‘feeding-wize.’ However, as a toddler I used to sprinkle wheat germ on his cereal, only serve whole grains,…. I thought I was doing what was best for both of my children. Wrong!!

  25. My son was diagnosed with celiac and EE at the age of 2 via biopsy. At that time I was pregnant with my daughter. My son and I went GF, WF, and a few more without ever consuming it knowly again. When my daughter was born, I did not introduce gluten or wheat until she was 2 years old. She could not tolerate it. The 3 of us have to stay GF and WF. Through my son’s diagnosis, I learned the reason why I was sick for 25 years and it’s confirmed that I also have Celiac. My daughter has not had a do for confirm hers, but her reaction to consuming gluten shows that, at minimum, she’s intolerant to it.

  26. Why don’t studies like this also take into account the the wheat today is not the same wheat our parents ate as kids? We have so genetically altered our foods it is scary. I am of the firm belief that no one needs to eat wheat. Any nutritional value wheat may have can be supplemented by other foods and vitamins. I am the only one in the family with Celiac and I was diagnosed when I was 41. Looking back and talking with my mom we figured out I probably had it as an infant.

  27. I’ve been off wheat/gluten for about 5 years now. When I was pregnant with my first child about 4 years ago I asked questions about what my diet would do to him but no one could give me any answers. Would not eating wheat make him more sensitive to it? Would he have problems with gluten later because of my diet?

    We were careful to introduce foods 1 at a time and held off on wheat until one of the last. We still introduce foods 1 at a time with my 2nd son but wheat was introduced sooner since his big brother was already eating it. So far both my boys seem fine. No food allergies that I’m aware of at this time. I keep a close eye on the things I know were symptoms of my own intolerance so we’ll see what happens. So far so good.

  28. i always had GI issues growing up but nothing severe until i went to architecture grad school and my 4 yr relationship with my boyfriend ended… both extremely stressful events. at that point to got really sick and was when i finally sought out help to try and figure out what was wrong with me. i started a GF diet after doctors diagnosed me with IBS and didn’t provide me with a solution other than pain pills. i saw a nutritionist who told me to stop eating sugar, gluten, dairy and soy. i know i had problems with blood sugar levels b/c i could feel the sugar highs and lows (which felt awful) but blood testing never showed anything (diabetes). being off gluten and sugar and sugar substitutes made a HUGE difference for me (as well as being off the dairy and soy).

    i agree that gluten issues are tied to diabetes and blood sugar levels (my dad seems to have the same issues but refuses to do anything about it). i also think there is a genetic predisposition but also i believe that stress triggers it. i wonder if kids are fed the same diet (like the twins stories above) but one has a stress trigger and the others don’t, if that truly makes a difference. also what is the trigger in a small child? a vaccine? an accident?

  29. My children started eating gluten while infants for I gave them teething biscuits. All three of them were intolerant to wheat. I didn’t know anything about gluten back then and feed them according to doctors instructions (1976, ’79, ’82). Then when they clearly had problems, I had to figure things out on my own and learned so much about nutrition and disease. I might note one more thing. I was diagnosed with fibromyalgia about 12 years ago. But when I put myself on a gluten-free diet, the symptoms went away. Also, the severe migraines I was suffering went away. Hope this info helps someone.

  30. My husband has Celiac Disease and I have Crohn’s Disease. I was very concerned about what to feed our son when he was born (he is now four years old). I was absolutely going to go total Gluten Free for fear that he would also have Celiac Disease as severe as my husband’s BUT I was discouraged from doing that by my son’s pediatrician. He advised me that they may in fact make him allergic to Gluten instead of protecting him in case he had Celiac. So for now, he is eating Gluten. However, I am still leaning towards taking Gluten out of his diet slowly. He will soon be tested for the disease and I suppose we will wait until those results come out before doing anything drastic.

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