What Were Your Child's Symptoms?

[elaine33]

Ryan is 7. He has always been a very allergic kid, colicky, gassy, baby eczema, diagnosed with allergies and asthma by age 4, spent three months breaking out in hives a few springs ago, etc and at times can be pretty unfocused and hyper. He allergy skin tested at 4 and was negative for everything. He has also been very fussy eating new foods and has stuck with a pretty basic diet which wasn't terrific. I have always tried to sneak new foods into him and in place of his pasta in the spring I gave him whole wheat pasta which he gobbled up and didn't notice the difference. Well he had severe reaction in the form of belly pain, but as he was running around at the time I thought it was an asthma-related thing, gave him Albuterol, he rested awhile and felt a bit better. The next week I did the same thing to him. We were up all night with belly pain from this. I took him to the pedi who said she didn't think he was allergic to wheat because he ate a lot of other refined wheat products without a problem. I have since taken him to an integrative doctor and a nutritionist. They both feel he has gluten and milk intolerance ( I did know about the milk since he was a baby). However, he has no failure to thrive, he is actually huge (tall and big boned), which is making me doubt the gluten diagnosis.

Do you think his reaction to wheat alone is enough to say for sure? He has never reacted this way to any other food.

Thanks, I am confused and overwhelmed about this. Maybe I need a hammer to hit me over the head.

[Guest nini]

from birth my daughter had diarrhea, projectile vomiting, dx'ed GERD, hives, severe bloody raw diaper rashes, chronic ear infections, failure to thrive, anemia and hypoglycemia...

but Celiac/gluten intolerance can manifest in any number of ways, including no outward symptoms at all.

in my opinion how they respond to the diet is absolutely the best indicator of a gluten intolerance. the other testing can be hit or miss since they are ONLY looking for the gastrointestinal presentations of gluten intolerance. So, if you suspect gluten is the culprit in your son's symptoms, try the diet. My daughter's ped. GI didn't believe that she could have Celiac after her bloodwork was negative, but her ped. supported me in trying the diet. Today she is a very happy and healthy 6 year old and I have no doubts that gluten was the problem for her.

[Mamato2boys]

My son's name is Ryan too ! My Ryan has allergies to milk, eggs, and soy, and we recently found out he's gluten sensitive too. He was 8 lbs. 9 ozs. and 23" at birth. He has always been no less than 50th percentile for weight (and is currently 97th), and always above the 100th percentile for height. He's tall and slim. He's had ongoing issues with soft stools and recurrent diarrhea. I can literally count the number of formed stools he's had on one hand - and he's 3. I was told by our pedi GI that he didn't "look" like he had celiac disease (and according to EnteroLab, he doesn't carry the gene for celiac, but he does have 2 gluten sensitive genes). That was my husband's issue too - Ryan LOOKS healthy, what's the big deal ? Doctors kept saying that too - he LOOKS healthy. Well, I knew something wasn't right though. Diarrhea is NOT normal !!! I don't care WHAT those doctors say. When Ryan was about 2 1/2 he started complaining that his stomach hurt. Now that he's gluten-free, his stomach pain is gone. His former yellow stools are now more brown (though haven't quite gotten formed yet, I'm guessing his gut is still healing).

Anyway, sorry to ramble there. It sounds like you & I have a lot in common besides naming our sons the same wonderful name. I agree with nini - try the diet - how he reacts is the absolute best indicator.

[jayhawkmom]

My daughter had debilitating chronic stomach pain, failure to thrive (she was 29 lbs at a month before her 5th birthday), very short stature - she always looked pale and sickly. She never had much energy, she was very moody, she's never (to this day) had a "solid" bm, and the list goes on and on.

Her GI said, "go ahead and try" to the gluten free diet idea. She started growing immediately. The tummy aches became less and less frequent, her color came back to her face....and her overall health has improved beyond belief. She still deals with many other allergy issues (wheat, eggs, dairy, peanuts) and lots of environmental stuff. But, she's doing a million times better than she was 4 months ago!

I agree with the others... if you suspect wheat/gluten issues... TRY the diet. You don't need a doctor to tell you it's ok.

[elaine33]

Thanks jayhawk, mama and nini, for the input. I guess because of skeptical people in my family I feel like I need some type of proof more so than a diet. I guess I am needing to hear that the diet is a valid diagnostic tool.

Mama, my Ryan is 7, but has been 97th percentile since he was about 18 months. He was 8'4" at birth.

Besides the belly issues, did you see an improvement in behaviors with the diet as well? I am thinking I might need to do Feingold in conjunction with this because I have noticed he doesn't do well with food dyes, either.

[jayhawkmom]

Besides the belly issues, did you see an improvement in behaviors with the diet as well?

We did!! Our daughter is also food dye intolerant, or... at least, they bring out the beast in her, intolerance or not. Once gluten free, her overall mannerisms improved. So did her speech, oddly enough. Though, she's always been a very hyper child.... she was recently dx with adhd. She IS on medications because we've done all sorts of dietary adjustments, behavior modification, and a whole host of other changes made - and nothing helped the hyperactivity or the impulsiveness. So, the medication helps that... and the dietary changes help the behavior issues, as well as overall health.

[Amooliakin]

I agree that Celiac can present itself in a myriad of ways.... or none at all. It certainly sounds from your description that Ryan could be intolerant of gluten. The size issue is not conclusive at all. My daughter has always been tall and never lost weight. She has been right on her growth curve all along. She did have intermittant stomach aches since age 5 (she is 8 now) and this summer it got a lot worse. We had the blood test done and it came back positive for celiac. Then we did the biopsy too and that was also positive.

While I agree that there is nothing to lose by putting your son on the diet and if it works sticking with it, I have to say something on the other hand that is positive about getting a "real" diagnosis. This diet is hard to keep to. It precludes a LOT of foods and you have to be VERY VERY careful of everything - cross contamination, etc. I find that it is much easier to stick to the diet for my daughter since I KNOW that she has celiac. She still has some good days and bad days, it is taking a while to get this all sorted out. I think that if I didn't have the blood and biopsy results I'd be much less likely to stick with the diet long term and much more likely to doubt if it was helping.

I have heard that symptoms can improve with age even when back on gluten. But that does not mean you don't have Celiac. If Ryan gets better on the diet it will be impossible to go back and test him later for celiac unless you fill him with gluten again. And at that point it really would be painful to watch.

So I suggest you do the tests now, and if he has celiac you can go ahead with the diet and never look back.

Good luck either way

[FeedIndy]

My daughter had a bit of constipation-nothing I was overly concerned about but it was always a bit difficult for her to pass. She was also fairly lathargic-at 8 months she still took 4 naps a day. Her main symptom, the one that prompted her ped to run tests, was failure to thrive. She was 14lb 4oz at 10 months when we started testing for celiac. At her allergy appt last week she was 17lb 12oz-3 pounds gained in months of gluten free dieting.

She has energy now-boy, does she have energy! Plus her diapers are becoming more normal.

[elaine33]

Thanks everyone.

Amooliakin, I think that is what I am feeling about knowing for sure. Is the for sure test the biopsy, though? I do have a fear of surgeries because I have major issues with medications and anesthesia (I actually crashed during my c-section delivering him because of the spinal and the narcotics they put in it). I am pretty much sensitive to a ton of things if I ingest them, not as much environmental but somewhat. So if I could know for sure by the blood test but I really don't think I want to go ahead with the biopsy for him (and definitely not for me) because if he is anything like me in that dept I don't want to do that to him.

[Guest nini]

the biopsy is only "for sure" if it comes up positive, if it's negative it just means they didn't find any damage YET... if you want a better option for dx besides dietary response, try Enterolab.

Personally I have NO DOUBT that my daughter is gluten intolerant/celiac despite negative tests. She has improves so much on the gluten-free diet, and at her last well visit the Dr. was surprised at how healthy she is, she said that she "rarely sees children this age THIS HEALTHY" personally I find that a sad commentary on our healthcare system but thats another can of worms!

I found that my daughter's behavior improved tremendously once we got gluten out of her diet. She used to have these TERRIBLE violent tantrums that were way worse than any two-three year old tantrum. She would kick scream hit bite, thrash around on the floor, couldn't stand to be touched and would literally be out of control for at least an hour or more , and this was usually within an hour of eating a meal.

[Amooliakin]

I understand the concern about the anesthesia. I was worried most about that as well. It was explained to me that they use an anesthesia that is not really deep like a general anesthetic for surgery. I don't remember the name of the drug, but apparently it just puts you in a kind of dozing state. But then you don't remember anything later.

I would have a good LONG talk with the anesthesiologist before going ahead. We talked to the one who did the procedure on my daughter and felt very comfortable with it. The actual endoscopy and biopsy is very quick - about 15 minutes. Then there is a half hour or so to wake up and that's it.

I hope you get some answers. From what I have read in many books (though it seems not to be the general consensus here) is that one should not undertake such a strict diet on a self diagnosis.

On the other hand, when someone (child or adult) has been suffering with symptoms for a long time and undergone many medical procedures already, then a diet that works is a godsend, and perhaps in those cases the temptation to cheat at a later date is not an issue.

For us, I knew that I had to have a more concrete answer.

My son and I got the blood test after my daughter tested positive even though we have no symptoms. I want to find out as much as I can and if I have a hidden form of the disease. Our tests came back negative, although I dont' know yet if we have the genetic marker.

If I ever have symptoms I will get another blood test and then a biopsy.

That's just the way I am.

I hope you will keep us in the loop as you continue this journey....

Amy

[vampella]

I hope you get some answers. From what I have read in many books (though it seems not to be the general consensus here) is that one should not undertake such a strict diet on a self diagnosis.

On the other hand, when someone (child or adult) has been suffering with symptoms for a long time and undergone many medical procedures already, then a diet that works is a godsend, and perhaps in those cases the temptation to cheat at a later date is not an issue.

For us, I knew that I had to have a more concrete answer.

Amy

[weathertopmama]

At the time of our diagnoses, these were the symptoms (and ages) of my boys.

N (8): dark circles under eyes, chronic constipation, cried easily, poor pallor, had not grown in about a year

J (6): prickly rash, flushed cheeks and dark circles under eyes, chronic diarrhea and weight loss, some anorexia, and mood disorders so severe that we thought he was bi-polar. Diagnosed with ADHD and some learning differences. Sleep problems, depression.

H (4): no symptoms! But his brothers did not exhibit any symptoms until age 5 either. Henry's blood tests were identical to his brothers.

T 1): diarrhea, rectal prolapse, screaming in the middle of the night from stomach pain, FTT, developmental delays. Sensory problems and autism symptoms.

All 4 of the boys were thin with potbellies. I had worried so long about their potbellies, but my MIL assured me that all 5 of her boys had looked exactly like that (therefore it was normal, I guess )

We got the initial screening done and the boys were barely over into the 'positive'. Our family doctor took that to mean 'borderline' and said that none of them had celiac. We had to return for N's constipation two weeks later, and our doctor's partner saw us and looked at the bloodwork. He has celiac himself and said that in his opinion, "borderline" for kids plus symptoms = celiac.

He sent us to a gastroenterologist. Dr. F felt that J's symptoms were the most classic, so we'd start with him. He had me increase J's gluten to prepare for the biopsy. After 2 weeks on the increased gluten, J was so dehydrated and depressed from the worsened diarrhea that it answered it totally in my mind. A week before the biopsy, I called the Dr. to cancel. I wanted J off the gluten NOW. The doctor said that such a dramatic dietary response, combined with the blood test, was sufficient for a diagnosis in his opinion.

J went gluten-free that day and all the above symptoms basically disappeared within 30 days. The same for the other boys. They are healthy and fine now, every one of them.

I hope some of this helps!

[Nantzie]

My daughter was always tall and totally off the growth chart. Being tall runs in my family. My mom was 6'. My aunt and cousins are close to that. I think my aunt is closer to 6'1" because I remember her being even taller than my mom. I'm only 5'8. Jenny, my 4yo, was always tall and continuing on that path up until about a year ago. Her growth dropped off and she wore the same clothes this summer at 4yo that she wore last summer when she was 3. She had dark circles under her eyes and was high strung and bouncing off the walls. Now that she's been gluten-free she has calmed down considerably, although she is still active and high energy, it doesn't seem internally uncontrollable anymore. She is active because she likes to be, not because she can't help herself. I love that she's active and strong and opinionated like I never was. I'm grateful that being gluten-free didn't take that away. It just focused and calmed it slightly.

Mikey, my 2yo son, was the exact opposite. He reminded me of my father, and the stories of myself at his age. Pensive is what my mom used to call it. Quiet. Reflective. Serious. Slightly shy with adults he didn't know. Paying attention to the details of things. When we went to the park, Mikey would spend the first half hour or so looking at the tree bark and bending down looking at the grass. Watching bugs. Wanting to show me these things. But after about half an hour or so his attention would turn to the playground. He'd watch the kids, look at the equipment, walk around and examine things. Then he'd start playing.

Now that they're both gluten free, they've practically switched places. But it's appropriate. Jenny, at 4 years old, has more internal control. She's still 4, but I can trust her to do what she's told in a percentage that's reasonable for her age. Mikey is now a boisterous, rambunctious, goofy little 2.5yo boy. Rather than being serious and pensive he is goofy and silly. Today, he ate raw carrots for the first time and held them in his mouth for a good half hour. He was running around with his mouth full of chewed raw carrot, running and shaking his head around. Then he'd stop and show me the chewed carrots in his mouth, see my girly reaction to the icky carrots, and seem very pleased with himself and run off again. He's just downright goofy now. It's enough to make me cry.

I always thought that my shy serious streak was just something that was a personality trait that ran in my family. Maybe it was gluten all along.

Nancy

[TCA]

Sorry, I've been out of the loop for a few days sick with a sinus infection. Just wanted to add that I never thought I had gluten issues. I'm short, but have always been on the heavy size and have to work hard at staying at a size 12 or below. I have a LOT of allergies and asthma. I have a lot of stomach pains, but was told it was probably an ulcer due to stress. I have also always had joint pains that were excruciating and were told they were growing pains......don't think I was growing at 29. I went gluten-free because of my celiac daughter and my symptoms have all improved. It's really been amazing. Ihave no diagnosis, but it's amazing how good I feel. I never knew what really feeling good was. Just wanted to let you know that a lot of us atypical people are out there and are really benefiting from the diet. Good luck!

[Nikki2003]

Thanks jayhawk, mama and nini, for the input. I guess because of skeptical people in my family I feel like I need some type of proof more so than a diet. I guess I am needing to hear that the diet is a valid diagnostic tool.

Mama, my Ryan is 7, but has been 97th percentile since he was about 18 months. He was 8'4" at birth.

Besides the belly issues, did you see an improvement in behaviors with the diet as well? I am thinking I might need to do Feingold in conjunction with this because I have noticed he doesn't do well with food dyes, either.

Nicole actually seemed fine until her 1st birthday,When she was born she was 8-12. Has always been very high on the percentiles,when she started to eat baby food she would eat around 3 jars a day plus formula.She basically stopped eating around her 1st birthday.Got constipated alot got fevers and sickness alot more that other kids. Had a bloated belly and sometimes would go right from constipation to diahrea without a warning. She woke up every 2 hrs at night until the age of 2. I think from belly pain. When I would bring her to the ped he said the belly is from probably she doesnt have her stomache muscles yet,Or she had gas.He didn't even reffer he to a GI,I did that. We went in they did a full family histor ordered some Blood work and said he would call with the results. He called 6 days later and told us she was positive for Celiac Disease,I didn't even know what that was,no one we knew of in our families had it. So it was new to me. She had the biopsy in july of this year and he called a few days later again and said she definetely had it.

Since then I had my older daughter tested and she is positive also. Her biopsy is the 27th of this month.

Also on nicoles rast milk test she had a positive result. He said usually kids that are just diagnosed with celiac also test + for milk,But it can go away.

That is our story

celina

[Mom2Ryan]

My Ryan (that's a popular name) was 10 lbs and 5 oz at birth. He was always at the 100th percentile for weight until 2 and he dropped to the 75th percentile which wasn't a big concern. He started with diarrhea 5-6 times a day at 2. We waited for like 6 weeks, had all the blood work (except celiac's) and all was normal. The gastro dr. didn't think he fit the profile because he was so big. He had huge circles under his eyes and was very pale. He just looked sick all the time. He had really bad asthma and started to be very sullen and wouldn't eat much of anything. We kept commenting on how he never ate dinner. They tried a high fat diet with benefiber to bulk up his poop for "toddler diarrhea" which never worked. Then he started with constipation and/or diarrhea. Finally a year later I was at my wits end. He was very ADHD acting and still had same symptoms and I could not potty train him. We saw a PA this time and she did he bloodwork, which was positve and he had a positive biopsy in May. In the meantime my bloodwork was positive and I have the biopsy on Wed. So he has gained 4 pounds in 3 months and is doing much better. We still have the constipation, think he is withholding so he is on miralax and about 80% potty trained. He will be 4 next month. I can tell when he gets glutened because he gets red rimmed eyes and really off the wall! He is definitely a happy boy again! So I wouldn't trust the he's too big story. We wasted a whole year. Trust your instincts. Good luck!

[wonkabar]

Besides the belly issues, did you see an improvement in behaviors with the diet as well?

OMG...YES!!!!!!!!!! My 3 1/2 year-old son had many "classic" symptoms since he was about 18 months (some earlier). We've had him on a gluten-free diet since just before his 3rd birthday, and it's the *best* thing we could've ever done for him. He had pale, loose, *God-awful* smelling poops several times a day, blistering-bleeding diaper rash (constantly), waking up several times per week (3-4) crying/yelling for no apparent reason, crying/yelling/tantrums for no apparent reason, very irritable, low threshold for frustration. He also has eczema, multiple food allergies and asthma as well as issues with inattention and distractability. The one thing my son didn't have an issue with was growth even though he was a 32-week preemie. He was 4lbs at birth and has always been a big, healthy boy. This made it difficult when we tried to convince the pediatric gi that something was, in fact, wrong.

We not only saw dramatic changes in his gi symptoms within a couple of days, BUT the changes in his behavior were truly unbelievable and immediate! Once we removed gluten from his diet, his behavior made a complete 180. He began sleeping through the night, 100% less irritable, not as easily frustrated, crying/yelling/ tantrums for no apparent reason stopped (they were now age appropriate for a 3 year-old). What was amazing to me was when I spoke to my sister in-law on the phone the week we started the diet and she said, "I can't remember the last time I called and didn't hear Zachary screaming in the background." This all became "white noise" to us. Now if he's screaming about something it's because he's being a brat!

The gluten-free diet did not "cure" his difficulties with inattention and distractability. This wasn't even a consideration when we removed gluten from his diet; it was purely for medical reasons. What it did do, subsequently, was weed out the extraneous behaviors and make it easier to identify the issues he does have with inattention and distractability. The gluten-free diet has been a win-win situation all around for us!

Although his bloodwork was negative, his results from Enterolab were very positive for gluten (see my sig)...remember, Enterolab does not Dx Celiac.