What did Celiac's look like in your child?

[countrygal]

I'd like to know how your child was before you found out he/she had Celiac's. I'd like to know if my dd is 'typical' if there is a 'typical.' My 5 1/2 yo dd is on the smaller side, I keep thinking it is because she has a different body type and just is small framed. Over the past year I have this nagging that she just isn't growing right. She has been wearing the same clothes and shoes since she was 4. Her hair doesn't really grow. The longest hairs brushes her shoulders. I have never cut it. Now her sister who is 22 months younger than her is the same weight and only an inch shorter and they share clothes. Her (the 3 yo) feet are now bigger than the olders. Lately she has been chewing on her fingers. I asked her a couple days ago why she keeps doing that and she said "Because my fingers itch and it's the only way to make it stop." Today I asked her if her fingers itch when she was doing it and she said "No, now my tongue itches." I googled it (naughty me) and Celiac's came up. Now everything makes sense. She barely eats. I keep thinking that if I could make her eat better she would gain weight and her tummy wouldn't hurt. She complains more days than not that her stomach hurts. She does have a constipation problem but never diarrhea. She complains of vague headaches often. She only eats bread/toast, certain types of crackers, frozen waffles/pancakes, cheese, breakfast sausage, pizza, and fish sticks and certain sweets. Seems like she will eat less and less. She won't eat French fries or eggs anymore. She doesn't drink milk (even chocolate) or juice so getting her supplements is impossible. I can't get her to even take miralax because she can taste it in the water. I thought if I could 'cure' her of the constipation her tummy wouldn't hurt and she would eat better. I feel as though she is anemic because she tires easily and is pale. I have been thinking because she doesn't eat well or get enough protein. She has a dr. appointment in 2 weeks (couldn't get any earlier, of course!! ugh.) So, is this just a case of a terribly picky eater or something else? Probably have to wait and see and hope the dr. doesn't think I'm a crazy, over-concerned mother and actually does something.

 

I just looked up her past weights. She gained 3 lbs. in the past year, and about 5 in the past 2 years total. She is 37 lbs. Is that normal?

 

Thanks in advance :)

[gracesteacher]

My 7 year old has it. Allergery eyes (black circles) tummy pain (also caused by corn for her) can not poo with out 2capfuls daily of miralex. She is 1% for weight and 3 for height.

 

We got rid off all gluten and it took 6 mos for her to look better now our battle is getting rid of corn (corn is I n everyrhing errrrrr)

[PuddleJumper1]

Dark circles under his eyes.

Trouble concentrating

Tummy issues

Self limiting certain foods

Really achy joints (he actually was on the way to being diagnosed with JRA before the ped said try the GI)

Trouble sleeping

 

He was 11 when we really started seeing issues. He diagnosed at 12. For him the achy joints were the most bothersome a the time. Hence the reason we were sent to rheumatology first. He also had stunted growth which cracked us all up because he's been at 100%+ on the height charts. After he was diagnosed and went gf he grew 1/2 an inch a month for 6 months. He's now 6'3"

[Karen in CO]

Take her to a Pediatric Gastroenterologist and an allergist.  

My little celiac has always been tiny.  Right now, at 9 she is 50 lbs, and she's been off gluten for years. 

 

Before we found out, she would eat and eat.  Her stomach hurt from the time she was an infant until she came off of gluten.  She never, ever slept well.  She would frequently vomit.  She had constipation and diarrhea.  

 

She is also allergic to dairy, soy, peas, apples, raspberries and mustard.  Her allergist is certain that she's allergic to more things, but she's so tiny it hurts us all to do the tests on her.  She's doing much better, but I wish we'd found the celiac and the allergies much sooner.

[bettyandbob]

my dd was small, but did not qualify for failure to thrive. She was having absence seizures (hundreds a day according to her neurologist). A friend of mine told me about celiac after my dd was diagnosed and had begun treatment for epilepsy. 

 

Although not failure to thrive dd was small. 25%ile I think. We are mostly 75%ile people --above average height and weight with no relatives particularly small. 

dd was treated for anemia at 2, which was quite strange because spinach was her favorite food. 

She had eczema off and on.

There were a couple of other things that were on a list I had seen with celiac symptoms. 

 

So, at 4.5, I argued round and round with the pediatrician to test for celiac. I continuously made appointments until she finally gave me a prescription to go to the lab. Then, she was quite embarassed to call me with the results and send me to the gastroenterologist. The gastro also insisted I didn't know what I was talking about, but the biopsy confirmed my suspicions.. 

[Tiramisu]

OP, I would definitely see a pediatric GI doctor. 

 

Severe constipation may also cause a lot of problems.

[gracesteacher]

Karen in CO you dd sounds like mine she can out eat my 250lb father and 20 min later ask for more. My research has lead me to find her corn allergy. We are begining this journey and corn is in so much. I do suggest you look in to it

[AimeeM]

Well, it turns out DD likely doesn't have celiacs, but she is allergic to wheat.

However, she presented so identically to most celiac's patients, that her ped thought that is what she had, until we went in to see a specialist who, without further testing (our choice to opt out of the further testing), said it doesn't really matter - wheat allergy is treated the same as celiac's, for the most part.

 

She had severe cramping after eating (like keeling over in pain), for hours at a time. Frequent diarrhea. Headaches. Occasional rashes. No weight gain for over a year. Her symptoms caused her to drop co-op and ballet.

 

Now, on a GF/WF diet, she very rarely has stomach troubles (she had problems last night; I suspect that the "GF" salad from Subway was contaminated) and spent the night on the toilet. We tend to stick to cooking at home for her. Some things that surprise others, but you'll learn if your dd does have celiac's (or a food allergy) is that, YES, any contamination is bad. She couldn't have toast at Grandpa's this Christmas, because she didn't have *her* toaster (separate toaster for her bread), like she has at home; wiping down counters; preparing her school lunches on a doubled up paper towel or clean plate; no double dipping in the mayo/condiment jar, etc. Blessedly, more and more food products are now labeling as "contains wheat, milk, peanuts, etc"; the one thing we have have to watch for is the fine print of "this product was processed in a facility with wheat products".

 

She has also gained weight (almost 10 lbs) in the past year. Her headaches are minimal now, and can be chalked up to puberty at this point :p

[countrygal]

I guess I'll have to wait and see what tests the show. I don't know what I'm more afraid of, she has it or she doesn't. It'd be nice to have an answer with an obvious solution. One thing/symptom that really stuck out to me is tooth defects. Her baby teeth came in really late (the top middle 2) at 16 months and had identical enamel defects/pitting on both. The dentist didn't have an answer other than enamel defects maybe from a fever (but she was never sick with a fever!) Now my 18 month old had the EXACT same thing happen to her top 2 teeth, which came in late (14 months.) They aren't cavities, just pits. So bizarre. The 18 month old doesn't have any other 'signs', but she doesn't like homemade bread and eats mainly meat, beans, veggies and fruit... so I wonder if the bread bothers her.

[countrygal]

Another thing is that she asks to eat often and says she's hungry, but can never decide on what to eat, so she ends up not eating anything or not much of anything. I think eating much just hurts too much. It makes me sad :(:(

[fraidycat]

I've not had DD formally diagnosed with anything. We just eliminated wheat/gluten/grains to see if it helped. It did.

 

Her symptoms:

 

Acne

Bed wetting

Severe moodiness/almost depressive like at times

Anger

Stomach aches

Headaches and dizziness

 

Eating grain-free/paleo/primal for the month prior to going home for Christmas we saw vast improvements. Not only in her, but the whole family with various minor "issues", energy levels, and weight. We had lots of cheats at Christmas. DD's face broke out badly, bed wetting increased, moodiness increased, she "didn't feel good" for a few days, and complained of feeling dizzy one day.

 

Now, she's still probably not as strict as she should be on her diet, but she's spending a few weeks with Grandma and Grandpa, so they get to deal with it. ;)

[SJ.]

If you find your dd doesn't have celiac's then I suggest you ask for a consult with a pediatric endocrinologist to explore growth hormone problems.  If your dd is significantly small do not accept any tests from your ped to test growth hormone because they are not accurate (according to our experience and according to my ds' endo).

[NicAnn]

Slow/no growth was my daughters biggest symptom. It still is actually. She still grows very slowly, but is recovering.

 

Rash on her bottom and legs occasionally, dark circles under her eyes.

 

She had no noticeable digestive issues until after we took the gluten out. Now, anytime she gets any, she vomits and has cramps.

[NicAnn]

Slow/no growth was my daughters biggest symptom. It still is actually. She still grows very slowly, but is recovering.

 

Rash on her bottom and legs occasionally, dark circles under her eyes.

 

She had no noticeable digestive issues until after we took the gluten out. Now, anytime she gets any, she vomits and has cramps.

[Karen in CO]

Karen in CO you dd sounds like mine she can out eat my 250lb father and 20 min later ask for more. My research has lead me to find her corn allergy. We are begining this journey and corn is in so much. I do suggest you look in to it

She tested negative for corn but positive for a lot of other foods that she was eating.  That's why I always recommend an allergist along with a pediatric gastro. doctor for parents that are suspecting celiacs.  Stomach trouble and failure to grow are symptoms of both allergies and celiacs.  Celiacs often develop multiple food allergies because their intestinal damage allows larger proteins into the the blood stream which can trigger allergic responses.  

[mommaduck]

My celiac has had no growth issues. But she would have headaches, tummy always hurting, continuously tired and weak feeling (and she's not a weak type person). She had mono once and it would mimic that in some ways, but she did not have mono anymore. We are a very meat/veggies type family and we noticed it would get worse whenever we would eat more breads and pasta. That tipped me off. We started adjusting her diet and noticed she did fine. As soon as she would have that (anything with wheat) she would spend the next 24hrs not feeling well. The doctor decided not to put her through the tests given the high false negatives (basically, because we had already adjusted her diet, her inflammation had gone down and the test apparently is most accurate only during a flare up). So the Dr has declared her a celiac and we are to keep her on a celiac diet. 

[G5052]

so yeah hold out for the doc's if you are going to go a blood testing route don't take her off before or you will get false negatives which as was mentioned above are common.

 

 

Yes, a family member did this.  False negative because they had already changed their diet.  They got better and went off the diet, and then got much worse.  Another blood test, and now we have a positive.

 

Also a niece of mine (a teen now), had multiple negative tests.  On her own, she researched it and went on a celiac diet.  She even talked to a family friend who is a registered dietician and got detailed guidance for her particular situation.  And she feels and looks so much better.  When she visited in November, I was struck by how great she looked and how much more animated she is.  She's going to be the smallest in her family, but it made a difference to the point that she's doing much better in school now and can hold down a part-time job.

[countrygal]

Wow everyone, thanks for sharing. Praying we get an answer. I want to wait and do the blood test instead of elimination diet. Hopefully we'll get some answers.

 

 

If you find your dd doesn't have celiac's then I suggest you ask for a consult with a pediatric endocrinologist to explore growth hormone problems.  If your dd is significantly small do not accept any tests from your ped to test growth hormone because they are not accurate (according to our experience and according to my ds' endo).

 

Do you know what specific names of the tests are? I was thinking thyroid should be checked, as I developed hashimoto's thyroid postpartum after her and now am chronically hypothyroid. I do see my endocrinologist next month so maybe I'll ask him a few questions if I haven't gotten any answers by then!

[SJ.]

Wow everyone, thanks for sharing. Praying we get an answer. I want to wait and do the blood test instead of elimination diet. Hopefully we'll get some answers.

 

 

 

Do you know what specific names of the tests are? I was thinking thyroid should be checked, as I developed hashimoto's thyroid postpartum after her and now am chronically hypothyroid. I do see my endocrinologist next month so maybe I'll ask him a few questions if I haven't gotten any answers by then!

 

We did the growth hormone stimulation test as well as the ACTH stimulation test.  The growth hormone stimulation test is a three hour test that stimulates the pituitary to create growth hormone and then they draw blood samples at specific intervals to test how much growth hormone was produced.  The ACTH stimulation test stimulates the adrenal glands to produce stress hormones (cortisol) in a similar way.  The reason they do them both at the endo practice we went to is because it is not uncommon to see issues with both.  In our case it turns out my ds has an under developed pituitary gland (seen in an MRI) and does not produce enough growth hormone.  

 

ETA: DS also had his thyroid, blood sugar, and liver function tested, as well as the blood test for celiac disease.  He also had his hand x-rayed to check his bone age.  These were all done concurrently with the growth hormone stimulation and the ACTH stimulation tests.

[Tiramisu]

I'll just add that there's one part of the celiac test you should be aware of because our doctors overlooked it. I think it's the IgA. You have to have high enough levels of this or the other parts of the test aren't accurate. Dd's levels were low and flagged but the pediatrician didn't know enough about it to catch it. Later, we wound up having an endoscopy that was conclusively negative, but we may have decided to get it done earlier if we had known about the IgA results.

[Chava_Raizel]

I don't know for certain my youngest has celiac, because I took her off gluten before we even considered getting her tested, and in order to get tested, she need to eat gluten for 2 months - not going to happen.

 

She's always been tiny, all my kids are, but she's not even on the growth charts. I was concerned at around one year that she wasn't babbling at all. She was always staring off into space and just had a lot of odd quirks. We did a few years of OT and she wasn't really improving. At 2, her motor skills were still delayed, and she had maybe 2 or 3 words. 

 

She hardly ate and was always getting horrible constipation. It would be so bad that she'd vomit from straining. We were giving her daily doses of miralax and I started researching to see what would cause her to be so sick all the time. That's when I stumbled on the gluten-free diet.

 

I took her off gluten and within a month her motor skills were at age level, she had 100 words and the constipation was gone. It was like a miracle - she was a whole different child. 

 

I asked her dr. if it was worth getting her tested for celiac, but she said it wasn't worth making her sick all over again just to find out what we already know.