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What Symptoms Did/does Your Child Have?
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My 5 year old is in the process of being tested for celiac disease.  We are scheduling an endoscopy, hopefully for the end of June.  The only issue she has is chronic abdominal pain, she has been complaining about it for about 5 months on a regular basis. It's hard to figure out what it feels like (nausea, cramps, gas etc) being only 5, she still has a hard time explaining what kind of pain it is.   She is a skinny kid too but has never been off the charts (about 25th% since she was born) and hasn't lost weight recently.  I just don't know what to make of all of this, I always read that constipation and diarrhea are symptoms but she always has had regular bowel movements.  Could this really be celiac?  (also all of he blood work has been normal except for an elevated IGG-TGG level).    Just wondering what everyone else's experience was.

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My daughter is in a minority with mostly skin issues.  She has 3 kinds of rash, the distended "wheat" belly, hasn't been on the growth charts since 9months and almost had a FTT dx at 12 months, she coughs and vomits, has mood swings, possible joint pain (totally random complaints but may just be toddler accident prone), possible anemia, urinary frequency and accidents, and off the charts mood swings.

 

Hope that helps!

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My daughter is in a minority with mostly skin issues.  She has 3 kinds of rash, the distended "wheat" belly, hasn't been on the growth charts since 9months and almost had a FTT dx at 12 months, she coughs and vomits, has mood swings, possible joint pain (totally random complaints but may just be toddler accident prone), possible anemia, urinary frequency and accidents, and off the charts mood swings.

 

Hope that helps!

 

Oh, and a fever.  Allergy skin testing was negative and allergist said he was confident in the result.  

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My 6 year old, who is also in the process of being tested (his endoscopy is June 19th) is pretty much the same as your 5 year old.

Been complaining every.single.day about his stomach hurting him. Random puking episodes (there weren't too many but there have been some) and apparently with the diarrhea and constipation here too....even though he would use the bathroom regularly...never had a complaint before this of any pooping issues unless there was a virus running through the house.

 

The pain in his stomach did increase to the point of him dropping to his knees in pain but it did so randomly.

 

 

Other things that I'm not sure are related to this or not....super dark circles under his eyes. He looks like someone decked him. I always chalked it up to his allergies (seasonal) but now I'm not entirely sure. There is also an issue with him getting some weird bumps right under his eye....gets all crusty and gross if I let it go too long and it is extremely itchy but it's only ever under his right eye starting at the tear duct/corner of his eye and stretching out from there. Doc gave us some cream once because she couldn't decide if it was impetigo or MRSA. I don't think it's either....though I couldn't tell you what it was. It didn't really respond to the cream we were given...though it did respond quite nicely to just some Neosporin....so I really have no idea!

Also....random complaints about joints and bones hurting but I haven't figured out if that is regular kid pains or if it is something more than that. They're pretty random. And he's started with some behavior issues too...which we totally didn't have prior to the start of all this. :/

 

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My 6 year old, who is also in the process of being tested (his endoscopy is June 19th) is pretty much the same as your 5 year old.

Been complaining every.single.day about his stomach hurting him. Random puking episodes (there weren't too many but there have been some) and apparently with the diarrhea and constipation here too....even though he would use the bathroom regularly...never had a complaint before this of any pooping issues unless there was a virus running through the house.

 

The pain in his stomach did increase to the point of him dropping to his knees in pain but it did so randomly.

 

 

Other things that I'm not sure are related to this or not....super dark circles under his eyes. He looks like someone decked him. I always chalked it up to his allergies (seasonal) but now I'm not entirely sure. There is also an issue with him getting some weird bumps right under his eye....gets all crusty and gross if I let it go too long and it is extremely itchy but it's only ever under his right eye starting at the tear duct/corner of his eye and stretching out from there. Doc gave us some cream once because she couldn't decide if it was impetigo or MRSA. I don't think it's either....though I couldn't tell you what it was. It didn't really respond to the cream we were given...though it did respond quite nicely to just some Neosporin....so I really have no idea!

Also....random complaints about joints and bones hurting but I haven't figured out if that is regular kid pains or if it is something more than that. They're pretty random. And he's started with some behavior issues too...which we totally didn't have prior to the start of all this. :/

 

Hi as soon as you said dark circles under eyes and achy joints I immediately thought of Salicylate Intolerance.  I am allergic to aspirin and all salicylates. All plants produce salicylates as natural pesticides. Therefore sals are in most fruit and vegetables. Very high in tomato sauce and olive oil. It causes everything from rashes, asthma, arthritis, and ADHD to migraines,  drifting eye,dizziness and vomiting.  See  sickfromsalicylates.com  for more symptoms.

 

Although there is a test for celiac, there is none for gluten intolerance or salicylate intolerance. In both cases you have to avoid the offending foods and see how you feel.  In my case 2 days after avoiding foods high in sals my asthma was  gone along with my arthritis, migraines, swollen glands, dry eyes, dizziness, and foggy headed feeling. 

 

Children (and adults) also experience eczema, ADHD, tourettes, aspergers and headaches from artificial colors. They are all made of petroleum and contain mercury lead and arsenic. See Feingold.org. Good luck, Joan

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My four-year-old daughter had three positive celiac blood tests (all the ones they ran) and is having an endoscopy this week. I want to second Jtoz54's thought about salicylates. It's been clear that my daughter had a food-related problem since early infancy (even when exclusively breastfeeding), and I tried all sorts of dietary changes before we thought to get her tested for celiac. The only thing that made any difference - aside from removing gluten - was a low-salicylate diet. It definitely helped significantly, although the improvements leveled off after a few weeks and it soon became obvious that it wasn't the only issue. I'm hoping that once we go gluten-free after the endoscopy, the salicylate intolerance will eventually resolve itself too.

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My dd was diagnosed at five with textbook dermatitis herpetiformis. She is assumed to be celiac as well, but it was not necessary to continue with testing, since DH=celiac disease=Gluten Free for life.

Her symptoms varied. Joint pain, anemia, lactose intolerant (now that her GI tract is healed, she can have dairy), fatigue, "eczema" (was actually DH), etc. She was in the 40% on the growth charts from birth. By age six, after one year gluten-free, she was in the 90% for height. Symptoms are so variable, it is nearly impossible to make a diagnosis on symptoms alone. I've heard of celiac disease being self-diagnosed when lupus, allergies, MS, or other auto-immune disorders were actually at play.

It is good to get the biopsy, and have a definative diagnosis. Educate yourself on what can cause false-negative results. Remember, a diagnosis of celiac disease has a sunny side! It is a disease that can be managed through diet alone (no drugs! hooray!). And an early diagnosis means you can start practicing prevention earlier (hooray again!). Best wishes for quick healing!

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Hi as soon as you said dark circles under eyes and achy joints I immediately thought of Salicylate Intolerance.  I am allergic to aspirin and all salicylates. All plants produce salicylates as natural pesticides. Therefore sals are in most fruit and vegetables. Very high in tomato sauce and olive oil. It causes everything from rashes, asthma, arthritis, and ADHD to migraines,  drifting eye,dizziness and vomiting.  See  sickfromsalicylates.com  for more symptoms.

 

Although there is a test for celiac, there is none for gluten intolerance or salicylate intolerance. In both cases you have to avoid the offending foods and see how you feel.  In my case 2 days after avoiding foods high in sals my asthma was  gone along with my arthritis, migraines, swollen glands, dry eyes, dizziness, and foggy headed feeling. 

 

Children (and adults) also experience eczema, ADHD, tourettes, aspergers and headaches from artificial colors. They are all made of petroleum and contain mercury lead and arsenic. See Feingold.org. Good luck, Joan

 

 

Joan, thank you for the advice! Right now I'm a bit overwhelmed with the Celiac's thing....and we haven't even started removing food yet!!! But I will definitely keep it in mind if things don't clear up. I read through some of the stuff that has high salicylates and found that the majority of that list are things he doesn't eat. I will keep an eye on it though, for sure.

As far as the food dyes and such go....we were already trying to keep them out of our diet as much as possible. We moved toward a whole food diet and we're making a lot of stuff at home from scratch. Little guy definitely reacted to a couple of things. He goes crazy after eating ice cream for some reason...so we try to stick to homemade popsicles (haven't tried homemade ice cream yet!) and the cheaper chocolate bars/candies. We'd also noticed my older son reacting to nitrates/nitrites and msg and sodium benzoate so we tried to keep those things out as well. It's definitely hard as this stuff is in EVERYTHING!!! Looks like we might be giving Paleo a try since it seems to make sense with the diet restrictions.

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My son was diagnosed at age 5.  He complained for about a week of a stomach ache and it was gone before we even got in to see the doctor.  He never had any GI issues at all.  What we did notice (about a month before the complaining started) was a drastic change in behavior.  Tantrums over nothing, just totally out of control.  When I mentioned this to the doctor, she thought to test him for celiac.  We were surprised with the results as I had never really thought of behavior as a "symptom" of something.   After a few days being gluten free he was back to his delightful self again.  

 

Now, if he gets glutened accidentally (only happened 2x in 2 years) he gets all kinds of symptoms . . . stomach pain, bloating, joint aches, headache, etc.  He was sick for about 10 days from a graham cracker.

 

Cara

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I didn't realize there were so many symptoms, I'm glad you were able to find answers for your children and help them feel better.  One other thing my daughter complains about besides stomach aches is feeling nauseous, I don't know if that's a symptom but I guess we'll find out when she has the endoscopy.  I just hate not knowing what the cause of all this is.

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My 5 year old is in the process of being tested for celiac disease.  We are scheduling an endoscopy, hopefully for the end of June.  The only issue she has is chronic abdominal pain, she has been complaining about it for about 5 months on a regular basis. It's hard to figure out what it feels like (nausea, cramps, gas etc) being only 5, she still has a hard time explaining what kind of pain it is.   She is a skinny kid too but has never been off the charts (about 25th% since she was born) and hasn't lost weight recently.  I just don't know what to make of all of this, I always read that constipation and diarrhea are symptoms but she always has had regular bowel movements.  Could this really be celiac?  (also all of he blood work has been normal except for an elevated IGG-TGG level).    Just wondering what everyone else's experience was.

My child only had a diaria...and we took blood test.

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DD7 was just diagnosed in May

Her symptoms:

As a newborn she had a bm every 10 days until we started solids. Still "not constipated" from then until 15 months with a bm every week. Was very gassy & had a vibrating bassinet to help her sleep.

At 15 months she started becoming very constipated. BMs every 1-2 weeks & very painful for her to pass. Started 1 capful of miralax daily. X-rays revealed a gut full of poop but nothing else. Ped referred us to GI after 4 months of miralax & no improvement.

Saw GI at 18 months. Negatives celiac blood work. Mag citrate colon cleanse. Still on miralax, but colon cleanse does its job & she's now regular.

After 2 years on miralax & a colon cleanse every 3 months, we're told it's all just ibs. And we don't need GI anymore unless she has a problem. She was 3 1/2.

From then until she was 6 1/2 we had her on & off miralax, and needed to have her on a schedule with verbal reminders for bms. If no oe said anything she'd go a week without one.

Sometime in kindergarten she started having headaches. By the start of first grade she was getting sinus/ear nfections nonstop...we were wondering if she needed a 3rd set of ear tubes. She was complaining of joint pain & randomly having upset stomach.

By mid-Dec 2012, dd was very nauseous 4/7 days a week. Thought it was the flu but then it kept going. Brought her to ped late Jan 2013 & sent for GI X-rays. Her clon was enlarged & full & told it was her ibs. So back to colon cleanse & miralax. But she was still sick.

By mid-Feb we started keeping a food diary because we were suspicious. Got a referral to GI after she threw up at Bed Bath & Beyond after eating a scone. Bloodwork in April confirmed our suspicions; dh & I cried tears of joy because we were getting scared of what else it could be. One month later we got the results of her biopsy.

Since going gluten free a month ago, no complaints from her. She's lost 1 1/2 inches in her waist & lost that awful wheat belly + skinny leg look.

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My eldest had horrific tantrums that would last for hours, some days from dawn to dusk she would lie on the floor crying, only stopping to have diahrrea up to 20 times a day. She would hardly eat, yet she had a huge stomach . She had a rash that we were told was excema, yet never responded to any cream. The skin was burned off her inside thighs from the toxic diahrrea. She was a little small for her age, but not enough to cause concern. We eventually took her to the er and demanded someone do something when we found her lying on the glazed over eyes. We told them we were no going to accept being told yet again that it was a tummy bug that would pass, and we're not leaving till something was done. They said to see our ped which was 5 weeks away. I asked the er doc if they thought in all honesty she would last 5 weeks, they got us an emergency appointment with the hospitals outpatient clinic. The head of that dept was stunned at how I'll she was.

Back and forth from gastros to be told she was constipated which she was but was actuall due to gluten, and had reflux, which she didn't.

All her blood tests were negative except the genetics. Gluten free everything disappeared and she sprouted upwards. Her skin is generally clear. Our gastro says its non celiac gluten intolerance. Our allergist and ped are convinced it's celiac we were just lucky enough to catch it before it caused enough damage to be picked up on the blood tests.

Our youngest was constipated, had something that looked like road rash on her torso, and aneamic. Our ped said given how sick her sister had been, and genetics, assume she has celiac disease, go gluten free and never go back.

Both kids suffered from damage to their bowels from being so constipated but after time on miralax both are doing amazing.

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my son is in the very beginning stages of looking to get a diagnosis, we have to put the gluten back into his diet to test and its been a tough decision to make, but when we get the date sorted, we will allow him gluten for a few days before. His symptoms up until now, constipation as a baby, turning to foul smelling putrid diarrhea up to 15 times a day most days. Slow cutting out of food groups, then foods, until we are left with 4 or 5 comfort foods that must be dry and crunchy(cereal, crackers, fries, potato chips, all now are gluten-free). A bad temperament towards food and mealtimes, mainly screaming at the mere sight of food. Irritability and big mood swings. Very pale, tired looking, PICA at around 1 year that improved with vitamins. Doctors have sent me away many many times saying he is a picky 2 year old having terrible 2 tantrums, but you know when there is something more going on. He isn't underweight but for a long time he refused all food and only wanted to milk, which didn't help the iron absorption at all. I think he hasn't lost weight due to the fact I finally give in at the end of the day and let him have milk than go to bed hungry. Finally now I have seen some improvements with taking the gluten out, they are thinking to look into it. Only a year and a half since I first walked in the doctors!!

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If your child is mostly gluten free before testing - you are very likely to get negative tests on everything - even if there is a problem with gluten.  Eating gluten a few days before the test is not likely to be enough.  Doctors differ in what they think is "enough" but most agree you need to be eating gluten regularly for 3-6 months before attempting to get an accurate test.

 

Even then, the tests can still be false negative, especially in young children. 

 

Just remember that a negative test does not necessarily mean no celiac/gluten sensitivity.

 

If your doctor told you that eating gluten a few days before the test is enough, you need a new doctor.

 

Cara

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Both of my kids were Dx. last May.  both had different symptoms.  Daughter (6) had tummy and bathroom issues, anemic, pale, always tired, boarderline underweight.

 

Son had tummy issues, constitpation since infant, joint pain, headaches but loads of energy.

 

We are about 6 months Gluten-free.  I still get tummy complaints, although less severe and less frequently..son still gets pretty frequent headaches, muscle issue.

 

Hope that helps

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My kids got picky. They both stopped eating a lot of what they loved. With my oldest, it took some time for us to see a problem, because it was unusual. Then, he started kindergarten and had a couple of accidents. He potty trained at 2y1m so I KNEW so ething was wrong, but still wasn't seeing it as celiac. I took him to out ped who said her son had accidents before he was diagnosed, so we ran the bloodwork again and it was positive. Wen my daughter startd suddenly getting picky, we immediately suspected celiac because her symptoms mirrored her brother's. she also tested positive. So, now, I just keep an eye on our two youngest. Our home is gluten-free, but they have it at preschool. My husband never really got sick either. His celiac was found mostly by accident. It makes it really tough, though, because if my kids or husband get glutened somewhere, they don't really know.

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We are gluten free since this past May 1st -- however along the way we kept finding out that gluten was in something we just ate (mayonnaise)...I think we may "finally" be gluten free.

 

My daughter turned 12 a few days ago. She had a positive antibodies blood test and has one of the Celiac genes. I refuse and keep refusing to do a biopsy. She has had symptoms: rashes, stomach aches, nausea...to the point where she stopped eating her lunches at school (I didn't know what was happening) and then she started eating less at dinner too. Last year she started getting a lot of headaches (probably because she wasn't eating enough!)

 

There are some behavioral issues as well, although I wonder if some of them are hormonal.

 

Had problems with pediatrician last year from Nov to April, and switched pediatricians after the tests in April.

 

For us, going gluten-free has meant weight gain after almost 2 years of no weight gain....and growth in height too. She still has stomach aches and headaches, but overall feels much better and seems stronger and healthier. Still underweight but not as underweight as she was 6 months ago!  :D

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Is there anyway you could email me so I could send u a pic of my babys rash I tjink its DH.... pediatrician clueless and no GI appt till Dec :(

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Is there anyway you could email me so I could send u a pic of my babys rash I tjink its DH.... pediatrician clueless and no GI appt till Dec :(

 

 

While this is not against the rules, I would caution people about giving out emails addresses, phone numbers, etc  to someone that is new to a forum community. 

 

You can post pictures to sites like photobucket and then post them on the topic you just made..

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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