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Erikarae

Effects of gluten on 8 year old

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 My eight-year-old son was recently diagnosed, via blood test, as celiac. (We're still trying to decide whether or not to have the biopsy done as we're wondering if it's too invasive for someone his age. )We've known for a couple years he had a wheat allergy though not severe but decided to have him actually tested for celiac as since May he was complaining about regular stomach cramping, diarrhoea and then spent a good portion of September violently ill. 

 Initially we didn't relate his illness to gluten as he seems to get sick about 2 to 3 days after he's consumed it. This weekend he went to his grandparents house and they fed him quite a bit of gluten (and told him it's OK once in while ?).  Three days later he had to come home sick from school as he was on the toilet and vomiting.  I've been reading some of the other questions on this forum and it seems as though most people get Ill within a couple of hours. Does anyone else feel the effects a few days later? It's very possible he's feeling other effects and just not really realizing it due to his age and the fact that he's not overly perceptive ;)  I'm just wondering if we are seeing the effects of gluten several days later or if dealing with something else… 

TIA

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48 minutes ago, Erikarae said:

 My eight-year-old son was recently diagnosed, via blood test, as celiac. (We're still trying to decide whether or not to have the biopsy done as we're wondering if it's too invasive for someone his age. )We've known for a couple years he had a wheat allergy though not severe but decided to have him actually tested for celiac as since May he was complaining about regular stomach cramping, diarrhoea and then spent a good portion of September violently ill. 

 Initially we didn't relate his illness to gluten as he seems to get sick about 2 to 3 days after he's consumed it. This weekend he went to his grandparents house and they fed him quite a bit of gluten (and told him it's OK once in while ?).  Three days later he had to come home sick from school as he was on the toilet and vomiting.  I've been reading some of the other questions on this forum and it seems as though most people get Ill within a couple of hours. Does anyone else feel the effects a few days later? It's very possible he's feeling other effects and just not really realizing it due to his age and the fact that he's not overly perceptive ;)  I'm just wondering if we are seeing the effects of gluten several days later or if dealing with something else… 

TIA

I am sorry that your son has celiac disease.  If you are not sure or are questioning his diagnosis, you should consider an intestinal biopsy (based on celiac expert recommendations).  Unfortunately, he would have to be back on a gluten diet for at least two to four weeks.

That said, I think you should research the effects of a celiac consuming gluten.  celiac disease is an autoimmune disorder like lupus, R. Arthritis, Crohn's Disease, MS, Thyroiditis, Type 1 Diabetes, except that the trigger for a flare-up (when the body starts attacking itself and destroying organs) is gluten.  For the other 100 or so AI disorders, there is no known trigger.  

http://www.cureceliacdisease.org/treatment/

When he ingests gluten, his antibodies start to build up against his small intestine.  He could feel the effects within hours.  He could feel them weeks to MONTHS after a cross contamination exposure (dipping a wooden spoon from a pot of whole wheat pasta water into a gluten-free pasta pot).  He can develop other AI issues and those that occur most often are Hashimoto's Thyroiditis and Type 1 Diabetes.  

Also, celiac disease is genetic and all first-degree relatives (you....) should be tested even if you don't have symptoms.  If he continues to consume gluten (even a tiny amount the size of a crumb), he will continue to get very sick.  At worst, cancer.  At a minimum, stunted growth, damaged bones, depression, anxiety, and the list goes on. 

https://www.verywell.com/just-diagnosed-with-celiac-disease-563014

Read more of Jane Anderson's articles.  She's a very good journalist who has celiac disease.

Please learn about celiac disease and how you can protect your son.  Talk to your doctor.  Ask for a referral to a registered dietitian who specializes in celiac disease.  

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I suggest you also have a talk with the gramps and explain the disease to them.   A little bit every once in awhile is NOT OK!   They need to understand they are causing damage to his body by giving him gluten, and the effects can continue for weeks to months.

Celiac disease is an autoimmune condition and that means the bodies own immune system attacks itself.  So anytime he eats even a tiny amount of gluten, the same immune system that defends him from germs and pathogens springs into action to protect him from the gluten.  But the attack on the gluten is misdirected to his own body tissues instead.  The immune system doesn't give up fighting invaders quickly, it will continue making new antibodies and killing them there gluten critters until the last vestige of the horse they rode in on is gone.  And then it may keep producing attacking antibodies for a few weeks or months later just in case.   Not good!  When the immune system can find and destroy germs that are too small to be seen with the naked eye, you know it can react to a tiny crumb of gluten.

Gluten as we mean it in relation to celiac disease is a molecule in wheat, rye and barley.  In addition, 10% or so of celiacs also react to the gluten in oats, even gluten-free oats.

There is a lot to learn about eating gluten-free.  I suggest new people avoid processed foods for a couple months, and instead eat meats, veggies, eggs, nuts, and some fruit.  Carbs and sugars are best avoided or limited.   Healing the gut is not a fast process and to make it easier on the body lots of protein and easy to digest foods are helpful.  Dairy is sometimes a problem at first too, as the gut lining damage impairs the ability to digest dairy sugar (lactose).

I like peppermint tea for gas/bloating, Pepto Bismol for gut pain, and plain aspirin for pain also.  Avoiding sugars and carbs can reduce gas/bloating while healing.  Gas and bloating can cause plenty of pain by themselves in an injured gut.

It's great that you came on board looking for help Eric.  R<O<C<K is a national group of chapters promoting healthy living for celiac kids.  They may have a chapter in your area.  Scroll down the linked page to find info on the group.

http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html

The newbie info thread linked below has some good info also.

There was a study recently that showed quite a few children did not completely heal their guts even after 18 months of eating gluten-free.  So it's not a simple thing and easy as people may think.  I think since celiac disease is diet related some people think of it as just a sore tummy, which is incorrect.  A sore tummy doesn't cause weeks or months of on-going gut damage.  Also, the gut damage can cause malabsorption of nutrients leading to stunted growth and other problems.  More not so fun effects.

Welcome to the forum Eric! :)

Edited by GFinDC

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You've had some very good advice already with the above replies.  I would like to add that although some people have trouble with lactose for a while, in my case, it was all dairy, not just lactose (for example, even milk or yogurt with the lactose removed) that made me ill.  I have been gluten free for 5 years now, but still cannot digest dairy, and get bad symptoms even if I have the tiniest amount. So have a good look at what else could be causing symptoms, not just gluten. Due to the age of your son however, I would only remove dairy/lactose with the help and advice of a dietitian or nutritionist as his bones are still developing and will need to substitute calcium etc. from other sources.

It is right what  cyclinglady said too, regarding the need to go back on to gluten in order to have a biopsy done.  I would feel the same as you regarding putting a young child through such an invasive procedure, not to mention the illness it may cause in subjecting him to gluten exposure, but only you can decide what is best for your son.

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Print out this thread & give it to the misinformed grand parents. 

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It is a very tough decision to make as a parent as to whether or not an intestinal biopsy is best for your child.  In Europe they are opting to avoid an endoscopy but follow a careful criteria for diagnosis.  But a recent study released by Mass General Hospital and Boston Children's Hospital (a leading celiac research center) found that 20% of children are not healing despite a gluten-free diet (they knew that about 30% of adults do not heal).   They also found that blood tests are not always accurate for measuring intestinal damage.  They concurred that biopsies are still needed for diagnosis and follow-up care.  

http://www.news-medical.net/news/20161130/Study-finds-1-in-5-pediatric-celiac-disease-patients-on-gluten-free-diet-sustain-persistent-intestinal-damage.aspx

As far as your son's grandparents, as much as they love him, understanding celiac disease and learning to keep him safe, is very difficult (you know that already, I'm sure).  I love my parents and showing them my lab results sealed their support, but honestly, unless you live the gluten-free every single day, mistakes will be made (even seasoned celiacs can make mistakes).  I visit my parents for weeks at a time.  I am lucky that I can keep a bin of gluten-free tools, etc. at their house.  I cook along side my parents to insure my safety and that of my husband.  I love them but I can not really trust them to keep us safe because gluten is just not on their radar everyday (ask my Dad about carbs in food and he knows the answer as he's diabetic).  Oh, they are good about stocking up on gluten-free goodies (certified on the box/bag is what I told them to look for), but avoiding cross contamination or reading a label of an uncertified gluten-free food can have severe consequences.  

I hope your son is feeling better soon.  Please remember that his behavior and cognitive ability is also impacted by gluten (learning can be impacted besides physical growth).    The autoimmune response does not just stay in the gut.  Consider joining a local celiac group or consider celiac.com as your group (that's why I do) for support and ideas.  There are welcome baskets for kids for free at the University of Chicago that can brighten his day.  Also there are gluten-free camps on the East and West Coasts of the US (I want one for adults....eat safely, canoe, archery....I wanna go!)  You son will thrive and improve.  Remember that many celiacs here are too busy and are now healthy to keep on posting.  That should provide some comfort!  

 

 

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Actually, it is very common to have delayed reactions and is indicative of classic Celiac Disease.  The antibody response takes time to build up to the point where you actually start to experience symptoms and this is why it took YEARS for me to figure out it was the wheat that was causing me so much grief. I have classic Celiac and it always takes about 2 days before I start getting really sick. Unless it is a really big hit and then symptoms happen within 12 hours.  I have been doing this for years so I go very long periods of time without a problem now.  Glutenings are a very rare thing for me at this point, thank God!

You have to make sure his grandparents never, ever feed him gluten again. I know it is difficult to make people understand how small amounts do such extreme damage but they must understand and follow protocol with him.  Good luck!

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It is the same for me as well.  My first reactions can appear from 1 hour-48 hours after ingesting gluten.  The above posts are giving good advice.  Hope your son gets better soon! 

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On 12/14/2016 at 10:52 AM, cyclinglady said:

It is a very tough decision to make as a parent as to whether or not an intestinal biopsy is best for your child.  In Europe they are opting to avoid an endoscopy but follow a careful criteria for diagnosis.  But a recent study released by Mass General Hospital and Boston Children's Hospital (a leading celiac research center) found that 20% of children are not healing despite a gluten-free diet (they knew that about 30% of adults do not heal).   They also found that blood tests are not always accurate for measuring intestinal damage.  They concurred that biopsies are still needed for diagnosis and follow-up care.  

http://www.news-medical.net/news/20161130/Study-finds-1-in-5-pediatric-celiac-disease-patients-on-gluten-free-diet-sustain-persistent-intestinal-damage.aspx

As far as your son's grandparents, as much as they love him, understanding celiac disease and learning to keep him safe, is very difficult (you know that already, I'm sure).  I love my parents and showing them my lab results sealed their support, but honestly, unless you live the gluten-free every single day, mistakes will be made (even seasoned celiacs can make mistakes).  I visit my parents for weeks at a time.  I am lucky that I can keep a bin of gluten-free tools, etc. at their house.  I cook along side my parents to insure my safety and that of my husband.  I love them but I can not really trust them to keep us safe because gluten is just not on their radar everyday (ask my Dad about carbs in food and he knows the answer as he's diabetic).  Oh, they are good about stocking up on gluten-free goodies (certified on the box/bag is what I told them to look for), but avoiding cross contamination or reading a label of an uncertified gluten-free food can have severe consequences.  

I hope your son is feeling better soon.  Please remember that his behavior and cognitive ability is also impacted by gluten (learning can be impacted besides physical growth).    The autoimmune response does not just stay in the gut.  Consider joining a local celiac group or consider celiac.com as your group (that's why I do) for support and ideas.  There are welcome baskets for kids for free at the University of Chicago that can brighten his day.  Also there are gluten-free camps on the East and West Coasts of the US (I want one for adults....eat safely, canoe, archery....I wanna go!)  You son will thrive and improve.  Remember that many celiacs here are too busy and are now healthy to keep on posting.  That should provide some comfort!  

 

 

Erikarae,

I think waiting on "biopsy proven" diagnosis only delays his recovery at this point.

See this link where a noted NZ Pediatrician Dr. Rodney Ford discusses the approach he uses in his clinic.

http://drrodneyford.com/extra/documents/239-how-early-can-you-diagnose-celiac-disease.html

You will have set backs but cycylinglady I think has the right approach to address your son's newly diagnosed Celiac disease with his grandparents.

GFinDC is right you might to look for a local ROCK support group.

As for how long it takes to react people are different.  My GI symptom's always begin 18 to 20 hours later but might go on for 3 or 4 days before I begin to fell somewhat normal.

Often my brain would be "fogged" by gluten for a couple weeks even after my bowel had settled down.

I hope this is helpful. . .. I was an ejectile vomiter as kid but gradually grew out of it.  I think most of that (so my parents said was do to my lactose allergy)  but that got better too in time.

I also wanted quote ravenwoodglass from another thread here is the link

Where I think sometimes too much information can confuse us.  A positive blood test is positive for a Celiac diagnosis and having a biopsy and getting a negative  biopsy result tends to confuse people.  And it can be slow to develop in children as Dr. Ford notes.

from ravenwoodglass comments in the above linked thread so what else could be after someone was tested and got  a negative biopsy result.

"Positive blood trumps negative biopsy. There is no other cause of elevated Celiac panel results. Can you get a copy of the biopsy reports? Some doctors will not call a biopsy positive until the villi are completely destroyed and discount any changes that come before that. Some will even tell a person to go back on glutenand come back in a year or so to retest to see if the villi are completely destroyed yet.

IMHO you should keep her strictly gluten free and let her heal. Being gluten free is not going to interfere with testing for other problems. Then when she has recovered have the celiac panel run again to see if those numbers have gone back to a negative range.

Good luck and I hope she is feeling better soon."

I don't envy the decisions you have to make but I know I wish I knew about my celiac diagnosis as a kid so my height would of been more normal compared to my peers.

I have several brothers and I am the shortest of them all and I have no doubt Celiac disease undiagnosed for 30+ years played a part.

At what age would I have been when I might have gotten a positive biopsy is hard to say because I never knew to check for a celiac diagnosis back then.

But I know you are lucky to be able to catch your son's diagnosis so soon so that he can begin to get back on track growth wise or stay on track through his teen years if he is still growing normally but I did not find out soon enough to get that benefit.

posterboy,

 

 

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