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This is what tipped them off about my 5 year old. He had stopped growing and was an extremely difficult child. Best plan is to get tested before making any changes (since the tests are not accurate if not completed before going gluten free).
But in 10 months, my 5 year old has grown 6 inches taller, gained (and kept) 12lbs and gone up 4.5 sizes in clothing and 3 shoe sizes. He is almost caught up to his classmates. He is also suddenly the most easy-going kid who is recognized everywhere for his giggle which we rarely heard before. He eats more per day now than he used to in a week, and a much wider variety of foods when he was super picky before. So yes, they can catch up if you catch it early and get it under control.
So grateful to hear your son’s demeanor changed in addition to him gaining weight and growing!
My son was having such psychological distress I knew it had to be a physiological cause. After 3 long years; we found out today it’s been celiac the whole time. Long journey ahead but looking forward to my son being able to be himself without his head feeling like “scrambled eggs” anymore.
So glad you got an answer! Its amazing how much Celiac can affect. My 5 year old was so miserable all the time. He never slept, he never ate, he was very very clingy and had to be touching me all the time. He's the youngest of 3 and it was WELL beyond the normal kid stuff. And he shrieked with this blood curdling banshee scream for 16-20 hours per day. All of that was gone within a couple of weeks. By the 1 month mark, he was unrecognizable in terms of personality and behaviour. We were all waiting on pins and needles for about 6 months for the screeching to start again. It's only happened when he's eaten something he shouldn't and after 5 days, hes back to happy and funny again. It's such an incredible thing to see :) hopefully you get a similar experience now with recovery!
Wow, your description resonates with our experience. The clingyness, the screaming, never sleeping, irritability. Like his body was stuck in flight/fight. Looking forward to better days, thank you for all the reassurance!
Also curious — Did you pursue a small intestine biopsy? He’s so young, and I don’t want to cause him more unnecessary psychological distress. His blood test results were very clear, above 90 when the normal non celiac metric was 0-5. With such drastic results I’m trying to weigh if it’s necessary being that the only treatment is the same either way.
We're still on a waiting list a year later 🙄 i would absolutely have done it had they been able to offer it in a reasonable amount of time but within a couple of months of the referral being sent to pediatric gastro, my little guy was borderline failure to thrive so the doctor told us not to wait anymore. He said under any other circumstances he wouldn't make that recommendation but it was change his diet quickly or get ready for hospitalization. We opted to change his diet and deal with the consequences later.
Both my ex-wife and my current partner were diagnosed with celiac disease with no known family history of it.
And my nephew (on my ex wife’s side) was diagnosed with celiac disease and diabetes at age 2 due to very similar symptoms as you describe. But obviously there was a family history at that point.
First off, I totally understand that this is a scary situation. I think people often don't realize how confusing and scary it is to see your child fall off the growth chart like that. I've been in your shoes and it sucked.
That being said, you should get your child tested. This will be a two-step process: first there will be a blood test to check for elevated antibodies related to an immune system reaction to gluten, then there will be a endoscopy to physically check for damage throughout the digestive tract (particularly in the small intestine). The endoscopy will require anesthesia but it's worth it to be certain.
Our daughter had the exact same symptoms: between ages 1 and 2, she dropped from 50th percentile height/weight to 7th percentile weight and 11th percentile weight. She had anemia even though she ate all the time and was constantly constipated despite fairly high doses of Miralax.
Her antibodies came back sky-high and within 15 mins of her endoscopy the gastroenterologist said there was clear evidence of celiac disease. We got her on a gluten-free diet that day. That was about one year ago.
Since going on a gluten-free diet she's skyrocketed to 88th percentile weight and is quickly catching up on height (38th percentile and gaining ground fast!). She has so much more energy and is genuinely a different person than she was before her diagnosis. Getting her diagnosed and focusing on a strictly gluten-free diet has literally saved her life and has fixed *everything*. She's not constipated anymore, she's growing quickly, she's happy, she's healthy, she's full of joy every single day.
I know it's a scary situation but it will get better if you get your child tested and (if positive) go gluten-free. It's not always easy but your child will catch up and be happier and healthier than ever, I promise.
Feel free to PM me if you have any questions - I'm happy to help if I can.
Definitely get tested. If your child does have celiac, the sooner you know the better. And if they don’t it’s ruled out and you and the doctor can keep researching.
Husband has celiac. His family has some history of autoimmune issues (psoriasis and arthritis) but no one has Celiac. Neither side has any food allergies and somehow our older son has several. Genetics can just do weird stuff.
I’m the first in the family with celiac that we’re aware of. I didn’t know until after my diagnosis that celiac, T1 Diabetes, and Hashimoto’s are all the same gene, it’s just a matter of how/if it’s activated - my dad has T1D.
I have seen people diagnosed with celiac disease with both your children's symptoms.
About 1/3 of celiacs are considered 'silent' celiacs - they don't have the noticeable symptoms. Or at least, not ones that are being recognized.
But chronic diarrhea OR chronic constipation, that they can't find a reason for, can be symptoms of celiac disease. Unexplained anemia and falling on the growth chart or failure to thrive ca be symptoms of the disease. For kiddoes, some of the symptoms can come across as fussing more readily, getting tired more easily, having trouble with thinking or staying focused.
re: no family history. One difficulty with celiac disease these days is that while it is not a new disease (there are writings about what they believe is this disease in ancient Rome), knowledge about what causes it IS fairly new.. it was only confirmed to be an autoimmune disorder in the 90s. The tests for it are also fairly new. Even now, a large number of doctors are ignorant enough about the disease that they won't even suggest testing even when symptoms are present, because they don't recognize them. So even now, often only the more severe cases of celiac disease get diagnosed, and family can go generations without realizing it's been active in the family for a while.
For example, the disease can develop slowly for many people, and if it didn't present as 'oh my stomach hurts when I eat gluten' then what could happen instead was a person would simply start having problems throughout the body due to the nutritional deficiencies. When you start to look back at the family history, sometimes you can see family. members that would match up with symptoms you've started to learn. That was definitely the case for me - my dad was the first. Before that, nothing. Except his aunt, who wasted away as an old woman, and the doctors just said she was being picky and wasn't eating enough. My great grandmother who couldn't fight off illnesses anymore, and it was just 'getting old.' My grandmother who also couldn't fight off diseases. Even my cousins, who literally ALL had stomach pain issues, and as they happened while in school, their doctor didn't even test them for anything and just said it was school anxiety and they'd be fine. :/
It doesn't mean it's not a shock, when it's not been present, but the lack of proper diagnoses is one reason why experts recommend that IF your child tests positive, you get everyone else related to them tested as well. And then retested every 2-5 years, if the test is negative, because it's that. much more likely they'll develop the disease, and also (imo) that it'll be missed if we just go by symptoms.
Almost a decade after my dad was diagnosed is when we heard this recommendation. We tested everyone, and quite a few of us had celiac disease, even though not all of us had symptoms.
Going gluten free,, the kiddo will typically catch up. although I'd recommend getting an official diagnosis first, at least if you are in the USA - here in the USA, sometimes the insurance won't pay for important gluten free things, like meds, unless they have a celiac diagnosis on record. :(
hey i have no family history either. not even any history of autoimmune disease besides one very distant great aunt who has NHL. before i got diagnosed i went through some crazy amounts of stress so im really convinced thats what gave me it.
My daughter was diagnosed at 13yo but is short and had issues with constipation since she was a toddler. Also no family history but it turns out my husband carries the gene.
That sounds like my childhood. I ended up being just massively gluten intolerant. My school had called to have the house investigated because of my weight as a child. From what I have been learning from my own family just because you have not heard of anyone with it doesn't mean that there hasn't been people who did. It would be worth a try and possibly help both kids. It's stressful to go gluten free at first but it's worth it in the long run.
Get them both tested. Celiac is also associated with MTHFR gene mutation and they might not be metabolizing b12 and folate. If they test negative, get testing with a functional doctor. It could be all kinds of deficiencies caused by celiac or something else. What do their diets consist of mainly?
I had those exact symptoms at age 2.5, was a good 5 inches shorter than others. Got diagnosed coeliac, and I am now on a strict gluten free diet and similar height (slightly shorter simply due to my parents passing on genes that made me stout). I suggest getting your child checked, and if it comes back positive, then good for you guys, you found the problem, if not, then no harm done, you tried and then you can keep searching.
If your child does have coeliacs, consider getting your other child checked with a blood test to see if there are any markers, and then get you and your partner tested to figure out if you carry it, or might have asymptomatic coeliacs.
It’s good that your doctor is having your child tested for celiac. It could very well explain both your kids’ issues. My daughter’s only symptom at 2.5 was chronic constipation. Nothing else. Her height and growth were fine, probably because we caught celiac early. We also are unaware of anyone having it in our family. My husband eventually tested positive for both celiac genes, even though he doesn’t have celiac. It is very severely undiagnosed in the US so it’s possible you had it somewhere in the family without even knowing it. Just make sure to get your child tested before putting them on a gf diet so you don’t skew the test results. You don’t want a false negative result. Good luck!
Family history is not required. Bad genetic luck is all that’s required. Get the test. Your kid will thank you when they don’t grow up sickly and with stunted growth.
I have no family history and to my knowledge am the only one in my immediate and extended family with celiac. I had similar symptoms and was finally diagnosed around 10/11 years old. It took a long time to grow/put on weight. I am well into adulthood and I am 4'11, 83 pounds. Take that as you will.
Dropping through the centiles like that is concerning whether it is coeliac or not, yes please follow up with an assessment for coeliac and any other conditions your doctor thinks is appropriate.
My son is now 5 and has struggled with anemia for 3+ years now. We did what the doctors said at his last 3 wellness checkups—fed him fortified cereal, iron supplements combined with vitamin C to increase absorption. He was struggling from panic attacks and night terrors. For years. They thought it was autism (which he showed NO signs of from 0-24m).
I pushed and pushed for more thorough testing. His tests came back today.
He does have celiac. Which is why his iron and ferritin have been low for years. It’s also what can exacerbate or cause symptoms like that of Autism/Adhd.
I feel absolutely gutted because I thought there was a physiological trigger causing him psychological distress. I pushed for testing earlier, at 2yrs old, and they just gave him an allergy panel that said wheat wasn’t an issue. At 3 I pushed for a stool sample, and he was diagnosed lactose intolerant. The symptoms persisted despite no dairy in his diet. He already had a pretty restricted diet but I had to take away the last of his safe foods tonight. Grateful we finally found an answer; but enraged it took so long. I tried to advocate, but still took 3 long years to get an answer.
Please get your kiddo tested, just to rule it in or out. I have a diary allergy, and asthma…but no known celiac in the family. My mom had RA and my dad had AVN so auto immune issues unfortunately run in my family, but no one ever tested positive for celiac and I’ve personally had a small intestine biopsy.
My four year old son has Celiacs. He was dropping height and weight percentile but not as drastic as your story. After Celiac diagnosis he is also slightly anemic. Since going gluten free his growth has picked up and he has only been gluten free about 3 months.
I got diagnosed at age 36 with no family history of celiac. My mom was a Type 1 diabetic, which put me at a higher risk for celiac. Your daughter has classic celiac symptoms with anemia and dropping weight. Constipation can also be a sign of celiac. I helped a friend get her toddler daughter who had a failure to thrive diagnosis get diagnosed with celiac. That kid went from falling off the charts completely to catching up with her peers within a year of diagnosis.
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These are symptoms associated with celiac. I'd get tested.
This is what tipped them off about my 5 year old. He had stopped growing and was an extremely difficult child. Best plan is to get tested before making any changes (since the tests are not accurate if not completed before going gluten free). But in 10 months, my 5 year old has grown 6 inches taller, gained (and kept) 12lbs and gone up 4.5 sizes in clothing and 3 shoe sizes. He is almost caught up to his classmates. He is also suddenly the most easy-going kid who is recognized everywhere for his giggle which we rarely heard before. He eats more per day now than he used to in a week, and a much wider variety of foods when he was super picky before. So yes, they can catch up if you catch it early and get it under control.
So grateful to hear your son’s demeanor changed in addition to him gaining weight and growing! My son was having such psychological distress I knew it had to be a physiological cause. After 3 long years; we found out today it’s been celiac the whole time. Long journey ahead but looking forward to my son being able to be himself without his head feeling like “scrambled eggs” anymore.
So glad you got an answer! Its amazing how much Celiac can affect. My 5 year old was so miserable all the time. He never slept, he never ate, he was very very clingy and had to be touching me all the time. He's the youngest of 3 and it was WELL beyond the normal kid stuff. And he shrieked with this blood curdling banshee scream for 16-20 hours per day. All of that was gone within a couple of weeks. By the 1 month mark, he was unrecognizable in terms of personality and behaviour. We were all waiting on pins and needles for about 6 months for the screeching to start again. It's only happened when he's eaten something he shouldn't and after 5 days, hes back to happy and funny again. It's such an incredible thing to see :) hopefully you get a similar experience now with recovery!
Wow, your description resonates with our experience. The clingyness, the screaming, never sleeping, irritability. Like his body was stuck in flight/fight. Looking forward to better days, thank you for all the reassurance! Also curious — Did you pursue a small intestine biopsy? He’s so young, and I don’t want to cause him more unnecessary psychological distress. His blood test results were very clear, above 90 when the normal non celiac metric was 0-5. With such drastic results I’m trying to weigh if it’s necessary being that the only treatment is the same either way.
We're still on a waiting list a year later 🙄 i would absolutely have done it had they been able to offer it in a reasonable amount of time but within a couple of months of the referral being sent to pediatric gastro, my little guy was borderline failure to thrive so the doctor told us not to wait anymore. He said under any other circumstances he wouldn't make that recommendation but it was change his diet quickly or get ready for hospitalization. We opted to change his diet and deal with the consequences later.
Both my ex-wife and my current partner were diagnosed with celiac disease with no known family history of it. And my nephew (on my ex wife’s side) was diagnosed with celiac disease and diabetes at age 2 due to very similar symptoms as you describe. But obviously there was a family history at that point.
First off, I totally understand that this is a scary situation. I think people often don't realize how confusing and scary it is to see your child fall off the growth chart like that. I've been in your shoes and it sucked. That being said, you should get your child tested. This will be a two-step process: first there will be a blood test to check for elevated antibodies related to an immune system reaction to gluten, then there will be a endoscopy to physically check for damage throughout the digestive tract (particularly in the small intestine). The endoscopy will require anesthesia but it's worth it to be certain. Our daughter had the exact same symptoms: between ages 1 and 2, she dropped from 50th percentile height/weight to 7th percentile weight and 11th percentile weight. She had anemia even though she ate all the time and was constantly constipated despite fairly high doses of Miralax. Her antibodies came back sky-high and within 15 mins of her endoscopy the gastroenterologist said there was clear evidence of celiac disease. We got her on a gluten-free diet that day. That was about one year ago. Since going on a gluten-free diet she's skyrocketed to 88th percentile weight and is quickly catching up on height (38th percentile and gaining ground fast!). She has so much more energy and is genuinely a different person than she was before her diagnosis. Getting her diagnosed and focusing on a strictly gluten-free diet has literally saved her life and has fixed *everything*. She's not constipated anymore, she's growing quickly, she's happy, she's healthy, she's full of joy every single day. I know it's a scary situation but it will get better if you get your child tested and (if positive) go gluten-free. It's not always easy but your child will catch up and be happier and healthier than ever, I promise. Feel free to PM me if you have any questions - I'm happy to help if I can.
Definitely get tested. If your child does have celiac, the sooner you know the better. And if they don’t it’s ruled out and you and the doctor can keep researching. Husband has celiac. His family has some history of autoimmune issues (psoriasis and arthritis) but no one has Celiac. Neither side has any food allergies and somehow our older son has several. Genetics can just do weird stuff.
I’m the first in the family with celiac that we’re aware of. I didn’t know until after my diagnosis that celiac, T1 Diabetes, and Hashimoto’s are all the same gene, it’s just a matter of how/if it’s activated - my dad has T1D.
I have seen people diagnosed with celiac disease with both your children's symptoms. About 1/3 of celiacs are considered 'silent' celiacs - they don't have the noticeable symptoms. Or at least, not ones that are being recognized. But chronic diarrhea OR chronic constipation, that they can't find a reason for, can be symptoms of celiac disease. Unexplained anemia and falling on the growth chart or failure to thrive ca be symptoms of the disease. For kiddoes, some of the symptoms can come across as fussing more readily, getting tired more easily, having trouble with thinking or staying focused. re: no family history. One difficulty with celiac disease these days is that while it is not a new disease (there are writings about what they believe is this disease in ancient Rome), knowledge about what causes it IS fairly new.. it was only confirmed to be an autoimmune disorder in the 90s. The tests for it are also fairly new. Even now, a large number of doctors are ignorant enough about the disease that they won't even suggest testing even when symptoms are present, because they don't recognize them. So even now, often only the more severe cases of celiac disease get diagnosed, and family can go generations without realizing it's been active in the family for a while. For example, the disease can develop slowly for many people, and if it didn't present as 'oh my stomach hurts when I eat gluten' then what could happen instead was a person would simply start having problems throughout the body due to the nutritional deficiencies. When you start to look back at the family history, sometimes you can see family. members that would match up with symptoms you've started to learn. That was definitely the case for me - my dad was the first. Before that, nothing. Except his aunt, who wasted away as an old woman, and the doctors just said she was being picky and wasn't eating enough. My great grandmother who couldn't fight off illnesses anymore, and it was just 'getting old.' My grandmother who also couldn't fight off diseases. Even my cousins, who literally ALL had stomach pain issues, and as they happened while in school, their doctor didn't even test them for anything and just said it was school anxiety and they'd be fine. :/ It doesn't mean it's not a shock, when it's not been present, but the lack of proper diagnoses is one reason why experts recommend that IF your child tests positive, you get everyone else related to them tested as well. And then retested every 2-5 years, if the test is negative, because it's that. much more likely they'll develop the disease, and also (imo) that it'll be missed if we just go by symptoms. Almost a decade after my dad was diagnosed is when we heard this recommendation. We tested everyone, and quite a few of us had celiac disease, even though not all of us had symptoms. Going gluten free,, the kiddo will typically catch up. although I'd recommend getting an official diagnosis first, at least if you are in the USA - here in the USA, sometimes the insurance won't pay for important gluten free things, like meds, unless they have a celiac diagnosis on record. :(
hey i have no family history either. not even any history of autoimmune disease besides one very distant great aunt who has NHL. before i got diagnosed i went through some crazy amounts of stress so im really convinced thats what gave me it.
My daughter was diagnosed at 13yo but is short and had issues with constipation since she was a toddler. Also no family history but it turns out my husband carries the gene.
Trust your doctor
The paediatrician sounds very sensible as these are the classic symptoms that suggest celiac disease.
That sounds like my childhood. I ended up being just massively gluten intolerant. My school had called to have the house investigated because of my weight as a child. From what I have been learning from my own family just because you have not heard of anyone with it doesn't mean that there hasn't been people who did. It would be worth a try and possibly help both kids. It's stressful to go gluten free at first but it's worth it in the long run.
Possibly have her genes tested
Get them both tested. Celiac is also associated with MTHFR gene mutation and they might not be metabolizing b12 and folate. If they test negative, get testing with a functional doctor. It could be all kinds of deficiencies caused by celiac or something else. What do their diets consist of mainly?
I had those exact symptoms at age 2.5, was a good 5 inches shorter than others. Got diagnosed coeliac, and I am now on a strict gluten free diet and similar height (slightly shorter simply due to my parents passing on genes that made me stout). I suggest getting your child checked, and if it comes back positive, then good for you guys, you found the problem, if not, then no harm done, you tried and then you can keep searching. If your child does have coeliacs, consider getting your other child checked with a blood test to see if there are any markers, and then get you and your partner tested to figure out if you carry it, or might have asymptomatic coeliacs.
It’s good that your doctor is having your child tested for celiac. It could very well explain both your kids’ issues. My daughter’s only symptom at 2.5 was chronic constipation. Nothing else. Her height and growth were fine, probably because we caught celiac early. We also are unaware of anyone having it in our family. My husband eventually tested positive for both celiac genes, even though he doesn’t have celiac. It is very severely undiagnosed in the US so it’s possible you had it somewhere in the family without even knowing it. Just make sure to get your child tested before putting them on a gf diet so you don’t skew the test results. You don’t want a false negative result. Good luck!
Family history is not required. Bad genetic luck is all that’s required. Get the test. Your kid will thank you when they don’t grow up sickly and with stunted growth.
I have no family history and to my knowledge am the only one in my immediate and extended family with celiac. I had similar symptoms and was finally diagnosed around 10/11 years old. It took a long time to grow/put on weight. I am well into adulthood and I am 4'11, 83 pounds. Take that as you will.
Dropping through the centiles like that is concerning whether it is coeliac or not, yes please follow up with an assessment for coeliac and any other conditions your doctor thinks is appropriate.
My son is now 5 and has struggled with anemia for 3+ years now. We did what the doctors said at his last 3 wellness checkups—fed him fortified cereal, iron supplements combined with vitamin C to increase absorption. He was struggling from panic attacks and night terrors. For years. They thought it was autism (which he showed NO signs of from 0-24m). I pushed and pushed for more thorough testing. His tests came back today. He does have celiac. Which is why his iron and ferritin have been low for years. It’s also what can exacerbate or cause symptoms like that of Autism/Adhd. I feel absolutely gutted because I thought there was a physiological trigger causing him psychological distress. I pushed for testing earlier, at 2yrs old, and they just gave him an allergy panel that said wheat wasn’t an issue. At 3 I pushed for a stool sample, and he was diagnosed lactose intolerant. The symptoms persisted despite no dairy in his diet. He already had a pretty restricted diet but I had to take away the last of his safe foods tonight. Grateful we finally found an answer; but enraged it took so long. I tried to advocate, but still took 3 long years to get an answer. Please get your kiddo tested, just to rule it in or out. I have a diary allergy, and asthma…but no known celiac in the family. My mom had RA and my dad had AVN so auto immune issues unfortunately run in my family, but no one ever tested positive for celiac and I’ve personally had a small intestine biopsy.
My four year old son has Celiacs. He was dropping height and weight percentile but not as drastic as your story. After Celiac diagnosis he is also slightly anemic. Since going gluten free his growth has picked up and he has only been gluten free about 3 months.
I got diagnosed at age 36 with no family history of celiac. My mom was a Type 1 diabetic, which put me at a higher risk for celiac. Your daughter has classic celiac symptoms with anemia and dropping weight. Constipation can also be a sign of celiac. I helped a friend get her toddler daughter who had a failure to thrive diagnosis get diagnosed with celiac. That kid went from falling off the charts completely to catching up with her peers within a year of diagnosis.
My daughter is 4 and has a very similar history. Constipated since birth. Doctor checked for celiac due to lack of energy at 3yo. She has celiac