Speaking of gluten free eating...

[Just Kate]

I know several of you have your kids (and yourselves) on a gluten free diet, yet you haven't been diagnosed with Celiac Disease. What led you to try a gf diet?

 

My situation...ds is 10 years old and has frequent stomach aches. We took him to his pediatrician two months ago and he was diagnosed with constipation and put on Miralax. The stomach aches did not go away so we saw a pediatric gastroenterologist who said that ds likely is not constipated (didn't fit all of the criteria) and took him off of Miralax. He asked us to keep a diary of bathroom habits and how he fees each day for a month and then go back to see him. Ds is having a bm most days, so I don't think that constipation is a problem, but he is still having regular (several times a week) stomach aches.

 

More info about ds...he is EXTREMELY picky. Doesn't eat many vegetables, little meat and little fruit. He mostly lives on carby foods.

 

Finally, we have had some behavior issues in ds over the years. He is just a very intense child. It does seem to be getting better as he is maturing though.

 

I have often wondered if his diet is the issue. I try to encourage him to eat more fruits and veggies, but he fights me on it. I talked to him this morning about it again (he was complaining of his stomach hurting). I asked him if it might be worth it to change his diet for a month, just to see if he felt better. He said he would consider it.

 

I know he needs to eat healthier. Maybe I just need to just encourage more fruits and veggies? Or maybe trying gluten free might help? How do I know? We go back to see his GI at the end of the month. I mentioned the food thing to him at our last visit and he kind of blew me off.

 

So my question is...if you (or your kids) are gluten free, but not celiac, what made you decide to try? 

 

Thanks!

 

Oh...ds did have blood work done and I know he does not have celiac disease.

[wapiti]

FWIW, it is possible to have BM daily and still have constipation stuck somewhere.  Usually, the doc will order an xray (that's what my ds had the other day to confirm, as the ped was not able to confirm by examination).

[Luckymama]

Has he had allergy testing?

My older dd suffered from intense, writhing-on-our-bedroom-floor stomach and intestinal pain for two years. We tried everything with her diet-wise-----kept a food journal, increased water intake, added veggies/fruit, eliminated all dairy, then eliminated gluten, blah blah blah. Last step was a trip to an allergist. It turns out dd is allergic to soy! We didn't eat obvious sources of soy (no edamame, no Chinese food, no tofu), but soy is present in just about every processed food.

We never would have thought of a more unusual (at least to us, at that time) food allergy.

[J-rap]

Three of my children are mostly gluten-free.  One of them had stomach aches all his growing up years.  A frequent image I have of him is curled up on our living room couch after dinner waiting for his stomach ache to pass.  Now that he is gluten-free, his stomach aches are gone.

 

One of my daughter's has a rapid heart-beat and stomach cramps when she eats gluten.  She has found that she can tolerate a few small bites, but anymore than that causes her to have severe cramps. 

 

Another daughter doesn't have stomach issues at all, but her asthma kicks in ONLY after she eats gluten.  She can feel it within 15 minutes or so after eating gluten.

 

I wonder if your son has sensory issues at well?

 

There are some GF products that he might like -- GF macaroni and cheese, for example.  There are also some GF breads that are okay, especially if you toast them.  Maybe you could give it a try for 30 days?

 

 

[Just Kate]

FWIW, it is possible to have BM daily and still have constipation stuck somewhere.  Usually, the doc will order an xray (that's what my ds had the other day to confirm, as the ped was not able to confirm by examination).

 

His pediatrician ordered an x-ray and determined that ds was constipated. When we went to the GI though, he said that was incorrect! 

[Just Kate]

Has he had allergy testing?

My older dd suffered from intense, writhing-on-our-bedroom-floor stomach and intestinal pain for two years. We tried everything with her diet-wise-----kept a food journal, increased water intake, added veggies/fruit, eliminated all dairy, then eliminated gluten, blah blah blah. Last step was a trip to an allergist. It turns out dd is allergic to soy! We didn't eat obvious sources of soy (no edamame, no Chinese food, no tofu), but soy is present in just about every processed food.

We never would have thought of a more unusual (at least to us, at that time) food allergy.

 

No allergy testing. Although I have wondered...

[Just Kate]

Three of my children are mostly gluten-free.  One of them had stomach aches all his growing up years.  A frequent image I have of him is curled up on our living room couch after dinner waiting for his stomach ache to pass.  Now that he is gluten-free, his stomach aches are gone.

 

One of my daughter's has a rapid heart-beat and stomach cramps when she eats gluten.  She has found that she can tolerate a few small bites, but anymore than that causes her to have severe cramps. 

 

Another daughter doesn't have stomach issues at all, but her asthma kicks in ONLY after she eats gluten.  She can feel it within 15 minutes or so after eating gluten.

 

I wonder if your son has sensory issues at well?

 

There are some GF products that he might like -- GF macaroni and cheese, for example.  There are also some GF breads that are okay, especially if you toast them.  Maybe you could give it a try for 30 days?

 

Yes, I do think he has sensory issues. Why do you ask?

[goldberry]

DD, from the time she was 5 always had tummy troubles.  Nausea, diahrea, constipation, etc.  Nausea was a big thing.  We did doctors, bloodwork, no dairy, probiotics, enzymes, basically I tried everything there is to try.  Finally, in desperation we tried GF.  Nausea was gone in a week, diahrea and constipation gone in two weeks.

 

This kid had not been nausea free since she was 5!  

 

She still have gluten occasionally, but she knows she will pay for it with a few days of tummy troubles. 

[Tiramisu]

His pediatrician ordered an x-ray and determined that ds was constipated. When we went to the GI though, he said that was incorrect! 

 

We had a highly recommended GI miss my dd's constipation for months. It took a major clean out to take care of the issue, not just the regular dose of Miralax on a daily basis. That seemed to make it worse.

[Tiramisu]

Everyone of my four kiddos has had stomach issues for years. My parents and aunts and uncles have had stomach issues and so do their bio kids but not their adoptive ones. In our family, we have had celiac testing which was all negative. I had celiac gene testing and one dd had an endoscopy. No celiac. I gave up gluten for a year anyway and it didn't help a bit. So I had pretty much given up that celiac would explain things. Then one dd had a slew of viruses this winter and started getting hives after eating sandwiches and drinking a glass of milk, so she got allergy tested and showed up as having a wheat and milk allergy. So I got two more dd's tested, one has a wheat allergy, along with a bunch of other foods showing positive. Unless my one dd's reaction hadn't suddenly become severe I would have never known we had an allergy problem. Only time will tell if being wheat free will solve the problems of these two. One isn't being strict and the other is begging to go off as it is.  :glare:

 

At the same time, two other dd's do not have food allergies and still have the stomach trouble. Of course, there is still the possibility of gluten intolerance. 

 

I do think allergy meds have greatly minimized my own stomach issues and I only tested positive to dust mites so far but I need to be tested again.

[wapiti]

His pediatrician ordered an x-ray and determined that ds was constipated. When we went to the GI though, he said that was incorrect! 

 

 

We had a highly recommended GI miss my dd's constipation for months. It took a major clean out to take care of the issue, not just the regular dose of Miralax on a daily basis. That seemed to make it worse.

 

Any thoughts on the GI's perspective, on why the x-ray could be incorrect?  It's so basic.  It's hard to imagine what the rationale is, though there must be one, even assuming the GI is wrong.

[fraidycat]

For us it was:

DD nightly stomach aches, frequent headaches, random dizziness. It was the dizziness that finally pushed me into the elimination diet camp.

GF helped all of the above + anger/mood swings + bad acne.

DS it was stomach aches.

GF helped that + energy levels/stamina. This kid never jumped on the bed or "bounced off the walls" prior to GF.

Me - constantly feeling nauseous after eating, frequent headaches, depressive mood tendencies.

All helped by being GF.

FWIW, I hate cooking. I loved sandwiches, grilled cheese, quesadillas, noodle soups, cereals for easy meal prep. I suspected (and fought against) that gluten might be the issue for a long time before I took the plunge. Now, I kick myself in the butt for waiting so long!!

Since then I've read The Primal Blueprint, Grain Brain, and Death by Food Pyramid, so we're mostly primal/paleo. Not 100%. We do rice, rice pasta, white potatoes once in awhile.

Paleo is easier than label reading!!

[umsami]

It started with me. I've had major diarrhea issues/urgency since I was 20.  Was scoped way too many times. Diagnosis…IBS.  Not helpful.

 

So…I did testing at 23andme and I carry the genes for Celiac. I failed a blood test, but when I eliminate gluten, I don't have issues 99% of the time.

 

DS1 had chronic constipation, encopresis, and was on Miralax.  DS2 and DD all complained about stomach aches after eating…and had occasional constipation.

 

Their genetic tests showed DS2 and DD1 carry the genes, but not DS1.  Still he feels better when he's gluten free, but he loves flour. So, I do what I can.

[Alyeska]

What led me to a wheat free lifestyle (I still have a bit of gluten here and there) is joint pain, constant heart burn, and tummy bloat.  Within 3 days I noticed a difference in how I felt.  Now, more than a year later, if I eat more than a bite or two of something with wheat, I pay a price with tummy upset and digestive issues.  It isn't fun.  ; )

 

It took me more than 3 weeks to get the cravings to go away and they were intense.  I also do not substitute with gf foods.  They are all so highly processed.  Now I eat more of a whole foods diet with minimal processed foods.  I am feeling great and can't imagine going back to the way I was eating before.

[kewb]

My dh is now gluten and dairy free. His doc recommended it to help with his Lyme disease. It has been about 3 months now. It has not helped his lyme symptoms at all but the digestive issues he had all of his life are gone and his skin looks great.  He has also helped with overall inflammation. At the start he was a good 80lbs overweight so what we assumed was just extra weight was also swollen flesh.  He has since dropped about 20lbs and the shape of his limbs continues to normalize even though the weight loss has slowed down.

 

 

[Slache]

I have an undiagnosed health condition which causes me to sleep 14 hours a day, but if I eat gluten free, low carb, and dairy free I can knock it down to about ten.

 

This is what I notice when I follow my diet:

More energy (not just more time awake, but actually more energy)

Less irritable

I look prettier, so I assume I'm healthier

 

Ask his doctor about psyllium.

[jmama]

I tested negative for Celiac for years, it wasn't until I had a small bowel biopsy that showed Celiac damage.  I had stopped gluten on and off over the years because it just made me feel less sick, but, I would get back on gluten again because it was just easier to eat what everyone else did.  I had gotten severely underweight by the time they found it.  As soon as I went completely gf, for a year now I think, I started to slowly gain and keep the weight on.  So, I say, if it makes you feel better, listen to your body.  Same goes for your kids, you know them best. 

[Jerico]

I had terrible nausea, stomach aches, cramps, headaches for a few months. I went off gluten and dairy and felt great within a few days. I had previously tried probiotics, miralax, etc.

My kids complain of tummy aches. A gluten free trial was good for them but no change coming back on gluten. I think the probiotic for them did the trick.

I just was so miserable and thanks to the hive :) cut out gluten and felt better!

[walkermamaof4]

I'd highly recommend ordering an IgG test through Great Plains Labs. We had ds's done through Metametrix but since then a friend with a child with life-threatening allergies told me she has used both and that metametrix missed some of her child's known allergies (including gluten) while Great Plains did not. Anyway, an IgG will show sensitivities to foods. For ds these included dairy, eggs, cinnamon, grapes, spinach, pinto beans, and peanuts. So when we took ds off of these, dd who had been having stomach cramp issues, asked to go off dairy too. But it didn't help her issues. Oh -we all went gf at the same time. So it wasn't gluten or dairy. Finally I asked a doctor to do an IgE for her as that particular doctor didn't do IgG's. Her IgE showed that it was sesame. I would have NEVER discerned this on my own but afterwards realized she was always sick after eating chinese food, among other things. Sad but true. So, my moral is that you can mess around trying all kinds of elimination diets. But the quickest route is an IgG and from lots of research I think Great Plains offers the cheapest, most complete one that I know of. HTH!

[Tiramisu]

Any thoughts on the GI's perspective, on why the x-ray could be incorrect?  It's so basic.  It's hard to imagine what the rationale is, though there must be one, even assuming the GI is wrong.

 

I had two people, a doctor and an np, at our pediatrician warn me about not trusting a radiologists reading of the abdominal xray for constipation. The np said she used to work in the ER and she told me I could take the Xray to her to read because, somehow, the constipation could be misread. 

 

Our GI seemed to never connect dd's upper GI problems with what was happening below. We shared the history of constipation but dd minimized her current situation along the lines of "It's fine." I think it's because what she was experiencing was all she ever knew and she didn't realize herself it wasn't normal.