New, Have Some Questions About My Children

[mshanson3121]

Hi, I wanted to introduce myself and ask some questions. I have two children, a 6 year old son who has Sensory Processing Disorder, and of course there's behaviors from that, and we also notice that he is very pale (iron has been checked and is fine), and is very gassy.

 

Then there's our daughter, 3.5, who has been diagnosed as having ASD (high-functioning). She is why I started thinking about gluten-free because I know it can be really big among children on the spectrum. Her doctor did run the blood test, and that came back negative for celiac, so I'm more wondering about gluten-intolerence, so I hope it's okay that I still post here. Some of the symptoms we see in our daughter are:

- chronic constipation (she only goes every 3-4 days)

- large, often painful BMs

- mucus in stool

- stool always floats

- tiny appetite

- random rashes

- insomnia

 

I guess I'm just feeling a bit lost and overwhelmed. Do these sound like possible gluten-related issues? Has anyone had a child that had insomnia due to gluten? How do you get started on a gluten-free diet?

 

 

[mamafish]

We've had all of those (I have one kiddo on the spectrum, one NT).  Definitely all possible food intolerance symptoms.  Gluten's the most likely culprit, so I'd try taking that out first and watching the symptoms - but know that if they don't get better, gluten might still be a problem, just not the only one (the other biggies for intolerance are dairy, corn, and soy, but my kid reacts to weird stuff like carrots - it can be almost anything).

 

For floating poop, we also found that enzymes to support particularly fat digestion were helpful (we use LypoGold - in all cases with enzymes, start them slowly).  Those were helpful for us in addition to identifying food intolerances.

 

I've seen SPD entirely vanish with removing intolerant foods, just to give you some idea of how major the behavioral changes can be (definitely not saying that *will* happen, but sensory issues are very food reaction and vitamin deficiency related for my son).

[mshanson3121]

Is there any test she should be having done from the doctor (with the floating poop I was wondering about possible malabsorption issues) before we go gluten-free? As I said, she did already have the celiac blood work done, though my son hasn't.

[mamafish]

Is there any test she should be having done from the doctor (with the floating poop I was wondering about possible malabsorption issues) before we go gluten-free? As I said, she did already have the celiac blood work done, though my son hasn't.

 

None I know of that are really reliable (there is some stool testing for fat content that can be done, but we found that really hit or miss - someone else here might have a better idea about possible tests).  My 10yo's poop has started floating again, even on the fat digestion enzymes, which is one reason we've just gone gluten-free even with negative celiac tests.

From what I can tell, especially in kids, it can take a long time to have enough damage to make the blood tests positive, but they can be malabsorbing and have behavior issues *long* before that.  I personally don't want to wait for enough damage for a diagnosis.  The "good" news is that you have lots of symptoms to track, so you should be able to figure out pretty quickly if gluten-free is making a positive difference.  Good luck - I know it's hard to think about all the food stuff when you have kids that are high needs and not sleeping!

[tommysmommy]

Sure sounds like you have reason to suspect gluten intolerance. Note in your daughter, there is evidence that celiac blood tests can produce false negatives in young children - and well, even if it's not celiac, gluten intolerance can show the same symptoms. Mucousy floating stools are a sign of a potential gluten problem (and definitely a malabsorbtion issue). Rashes, poor appetite, everything you mentioned is suspect for gluten issues. Celiac is an autoimmune disease whereas gluten intolerance is believed to be an immune reaction - it makes a difference to docs but to you and I... it means the body sees gluten as a toxin and is fighting to get it out in all kinds of crazy ways.

As for your son, I recently read an article in Huffington Post about a girl (Lucy) misdiagnosed with SPD when all along it was a gluten issue. Look it up online, worth reading. I'd suggest one more call to your doctor than try a gluten free diet for a couple of days, can't hurt to try it - it's just food - take notes about any changes (I observed big changes right away in my 2 boys) then talk to your doctor again. once you are totally gluten-free, testing is a problem -so don't go all in just yet, but sadly sometimes (like in my case) you need to kinda prove it for the doctors to give it more consideration. Also consider dairy as an issue (we have both lactose & casein issues in my family). Good luck, keep searching for answers and you will find them!!

[mshanson3121]

You know something I just came across - is that red, hot ears, can be a sign of gluten intolerance. My son OFTEN gets red, hot ears for no reason!

[GF Lover]

Where in the world did hear that red, hot ears can be a sign of gluten intolerance.  This is completely ridiculous IMHO.

 

Colleen

[mshanson3121]

Colleen... it was in a medical journal, and was documented as a sign of allergy/sensitivity. Not a sign of celiac per se, but it is a recognized sign of allergy/sensitivity in general. And actually, if you do a google search, you'll find TONNES of responses to people who noticed their children with celiac had red ears while eating gluten.

[shadowicewolf]

You know something I just came across - is that red, hot ears, can be a sign of gluten intolerance. My son OFTEN gets red, hot ears for no reason!

More than likely an allergy.

[GF Lover]

Colleen... it was in a medical journal, and was documented as a sign of allergy/sensitivity. Not a sign of celiac per se, but it is a recognized sign of allergy/sensitivity in general. And actually, if you do a google search, you'll find TONNES of responses to people who noticed their children with celiac had red ears while eating gluten.

 

I didn't find any medical research, only issues that may plague the inside of the ears that may or may not be a result of gluten.  DH is an entirely different issue.  As shadow suggested, an allergy of some sort may make an area of the body red.  There are many reasons for our body doing the things it does.  I would just caution you to rule out any health concerns or allergies that may also be involved aside from gluten.  Some people also have problems with milk.  I would also ask the Doctor for nutritional testing to see if they are absorbing since you also suspect malabsorbtion.  I believe the stool sample may find fat malabsorbtion but may not show if nutrients are absorbing properly. 

 

Colleen

 

Colleen

[nvsmom]

You know something I just came across - is that red, hot ears, can be a sign of gluten intolerance. My son OFTEN gets red, hot ears for no reason!

 

That could be roseacea. I get red in the face and ears when I eat certain foods....and when I get sick or embarrassed... and when I sit under florescent lights. Weird.  LOL

[mshanson3121]

Thanks for the input everyone. So at the end of the day, it sounds like there's reason to suspect gluten right?

 

So... I think I would like to try the gluten-free diet before seeing the doctor again, so then I can tell our doctor look we tried this it helped, or it didn't help, so let's look further.

 

What is the best way to start? For those who noticed improvements, how long did it take to see them - especially with sleep!!!

[kareng]

Just remember that they can't test for Celiac without eating gluten.  If they start feeling good, are you willing to put them back on gluten for many weeks to get a diagnosis for school, hospitals, etc? 

[mshanson3121]

They already tested our daughter this summer and it was negative. Our doctor won't test again for another year. And, if we do the gluten-free diet and it works, do we really NEED to know that it's celiac?

[greenbeanie]

My daughter had pretty much all of the symptoms you mention, except loose stools instead of constipation. She was diagnosed with SPD at age 3, but she had all sorts of neurological, sleep, and food-related problems essentially since birth. Her sleep problems were really horrible as an infant, and that (along with projectile vomiting) was the only thing that the doctors really took seriously at the time - they kept dismissing it as colic, then "terrible twos", then anxiety, etc. for a long time. She was reacting strongly to my breast milk even before starting solids, and we eventually had to put her on Neocate formula, which caused immediate and dramatic improvements that started to decline again once she started solids. She saw all sorts of specialists as an infant and toddler, and at various points they suspected everything from mild CP to allergies to "abdominal migraines", but we never got to the root of the problem until we figured out six months ago (at age 4) that she has celiac. 

 

We were fortunate that my daughter did have clear positive blood tests and biopsy, but I'm sure there would have been some earlier point when she probably would have gotten false negative results even though gluten is the problem. Whether it's celiac or an intolerance, a gluten-free diet is certainly worth a good long try. Digestive problems were not my daughter's first or most-concerning symptoms - it was the neurological, sensory, and sleep issues that were the biggest problems. Happily, her sensory problems and tantrums are almost entirely gone after about 6 months gluten-free. There was a HUGE improvement in her behavior and stomach problems within a week. The sensory issues took longer, but we saw steady improvements with that within a few weeks too. Now she occasionally still wants her sound-reducing headphones when we're somewhere really noisy, but she is not in tears every time someone starts a lawnmower two blocks away, like she was before. 

 

As for whether an official diagnosis matters, that may depend partly on your plans for school. Some schools may not be willing to provide the accommodations necessary for a gluten-free kid without an official diagnosis. We are fortunate to have a supportive preschool and extended family, but I know others who have had trouble getting grandparents, daycare providers, and others to comply with a child's strict gluten-free diet without medical documentation. We also had an awful time (before diagnosis) getting any doctor to take my concerns about her behavior and stomach pains seriously, and I finally had to take her to three different doctors before anyone would even order the celiac blood tests. As soon as she was diagnosed, though, they readily agreed to order nutrient tests (which showed low D) and send us to a nutritionist, etc. So having an official diagnosis was very helpful for us, simply to ensure that she got the follow-up she needs, but it may not matter as much if you already have a supportive doctor. 

 

Having done a gluten challenge myself, I will say that it can be pretty horrible to go back on gluten once you've stopped. So it's much better to get thorough testing done first. Do you know which tests they ran on your daughter? If they just ran the most common tTG-IgA test, it may be worth at least asking the doctor to order the DGP-IgA and DGP-IgG tests before trying the diet. I've heard that they often turn positive first in young children with celiac. But regardless of any test results, if my daughter had gotten negative tests and couldn't get retested for a year, I certainly would have tried a gluten-free diet anyway. 

 

Good luck, and I hope you see improvements quickly! 

[frieze]

They already tested our daughter this summer and it was negative. Our doctor won't test again for another year. And, if we do the gluten-free diet and it works, do we really NEED to know that it's celiac?

for school you may, they don't have to take your word for it.  and you will need them to work with you.

[greenbeanie]

(I'm not sure why my message posted twice. Just deleted this repeat posting. Browser seemed to get stuck when it was trying to post before.)

[mommida]

Crazy pre diagnoses story.....

Daughter started having severe Celiac symptoms when she started "solids".  She was having symptoms on breastmilk too.  I removed gluten from the family diet because docors kept blowing off concerns and didn't do any testing. (over 10 years ago ~ but I still hear doctors are blowing off testing for that "fad diet").  Improvement!  Asked for testing to be done with new information of gluten free diet helping the situation. 

 

Put everyone but myself back on gluten.  (I was too sick immediately after eating and had to take care of 2 kids.)  My daughter was sick, sick, sick, again.  She had her Celiac panel drawn and the day after the 2 week gluten challenge she was hospitalized for 4 days for dehydration from "D" and vomitting.  Started gluten free diet in hospital.  She was labeled as too ill for the endoscope with biopsy and the genetic testing was done.  She tested positive for both DQ2 and DQ8.  She was diagnosed as "probable" Celiac.  She was pur strictly on a gluten free diet at 16 months old.  Life was pretty good.

 

Then everything really hit the fan.  She just turned 6 and all Celiac symptoms returned, but much worse.  She was vomitting up to 5 times a day.  I could not find any "hidden" gluten or cross contamination in the house.  Back to the ped. GI for an endoscopy with biopsy.  She was diagnosed with Eosinophilic Esophagitus.  EE is now known to have a connection to Celiac and all new cases of EE should have an automatic screening for Celiac.

 

The really hard question that will never be solved, Did she have EE from the start?  Could we have avoided the once a year (on average) hospitalization for dehydration if she had been fully diagnosed with BOTH Celiac and EE?

 

From my experience, I suggest you get a FULL and ACCURATE diagnoses.  It sounds like the ped. is not helping you get the diagnoses, so you need a refferal to a ped. gastro.

 

A short list of related disorders for gut pain/ "D"/ vomitting/ malnutrition in ped patients

Celiac/gluten intolerance/ DH* DH would have a noticeable bilateral rash

congenital defect of GI track

H. Ployri.

Eosinophilic Gastro Track disorder/ EGID

parasitic infection

 

(that's a short list off the top of my head from memory of pre EE dignoses 5 years ago.)

[mshanson3121]

^^We live in Canada. We only see a GP. In order to see a ped gastro we would have to be referred to a ped, which would take at least 2 months. Then we would have to have the ped refer us to a ped gastro, which would take another 2-3 months.  The nearest ped gastro is 7 hours from home at the children's hospital. Now, the ped would probably order some tests, however, the wait time is normally 1 month for blood work, and would be probably 3+ months for any sort of scope. So, we'd be looking at another 3-6 months for testing, then tack on another month for results.

 

So, is it worth waiting?

[nvsmom]

It wasn't with waiting for in my kids' situation. They ad some symptoms that were gastro related but my oldest had cognitive and concentration issues (we suspect mild aspergers but never completed the diagnostic testing because we homeschool - a diagnosis wouldn't affect his life. Anyway, we knew I was a celiac so thy had the tTG IgA tests (I'm in Alberta and that's all they would run) but they all came back negative. We made them gluten-free anyways and they had a lot of "coincidental" health improvements over the next few months. I wasn't about to make them continue eating gluten for another year or so just so we could test again... They can test themselves when they are adults, but I won't make them sick children just to get an answer.

As for the schooling, we homeschool through our public school and they attend school two days a week. It was no problem to inform the school of my kids' celiac disease r my son's nut allergy. I don't know what province you are in but Alberta it is easy to get provisions for kids.

Good luck.

[mshanson3121]

nvsmom - We homeschool too! We're in New Brunswick, it wouldn't be a problem to get provisions for a celiac diet if they were to enter the public school system. It'd be far harder to get provisions for services for my son's sensory issues or my daughter's ASD.