I'm considering trying this for Will since he has such bad constipation problems, all though I don't have any reason to believe he has an allergy to it... just curious if anyone else has had this experience OR if any mito friends know squat about how this may or may not affect him.
I sent a query over to his doctor and her nurse said that gluten free won't hurt Will, but to remember that he likely has BM/constipation problems because he has slow motility because of the Mito. Which is very true. But perhaps incorporating some gluten free foods into our diet will help with the motility.
Any good website suggestions for gluten free foods / recipes?
On the BM front, our little pooper has had THREE days of daily BMs! I can't tell you the last time that has happened. On Sunday it was from a suppository, then he had BMs on his own at school in the potty - no accidents. Seriously, I can't remember the last time he's been this consistent. I think it's a good sign that he's really turned the corner from being sick recently. At least that's what I'm hoping. Plus, I started a new BM "treatment" - I'm alternating miralax and L-Reuteri. Maybe that's actually doing some good.
I really need to download more pictures off the camera... this was from Christmas. They love playing in Tom's truck!
Our pediatrician did suggest that the gluten thing could be the culprit for Abby's cronic constipation but she did a blood test for celiac disease and it came back neg. I'm sure it won't hurt to try though. Honestly we have tried everything...no dairy, no gluten, no soy...only bread and water (just kidding). Our doc says that unfortunately some kids just really suffer with constipation. So until she will start eating enough fiber on her own we do miralax daily and fiber gummy vitamens 2 a day. On bad weeks we add benefiber to her juice once a day opposite time of the miralax. this has been working since she had a major impaction issue last July. (knock on wood)
ReplyDeleteSheila
lori, you crack me up. is it too flippin obvious if I post some links here? ;) TMI kinda left the building with me a long time ago...but I do appreciate your discretion.
ReplyDeleteYour question peaked my interest and I did a bit of googling. my favorite hobby. anyhow, I'm sure you've already read stuff like this. but I read this today:
http://www.mitoaction.org/blog/october-mito-meeting-tummy-troubles
I've seen it mentioned on a lot on mito sites about a high lipid (fat) and low carb diet. Interestingly enough, this is the same as the paleo diet, which is what has caused me to feel my best and made such a difference for me. It is also called the autoimmune diet. My blood test results showed severe intolerance to gluten and dairy, but I'm actually finding that "grain" in general is not agreeable to me. I've been paleo for a few months with a few cheats here and there (never gluten or dairy cheats, but crazy wild me has had rice or potatoes a few times. ha. what a rebel). even small amounts of complex carbs (rice, corn, potatoes, oats, legumes, etc.) aren't so kind and I end up having similar symptoms as when I was really sick, just not as extreme....still annoying enough that it makes the restrictiveness of paleo still alluring. After feeling as bad as I did, I'll do just about anything not to be back there again.
even more interesting to me, was when I read that link about mito and WHY it causes slow motility (the autonomic nervous system dysfunction connection to mito), it made me do a double take. I don't know if I shared that part of my story, but I have mitral valve prolapse/dysautonomia also. dysautonomia has contributed to weird issues for me like extreme nearsightedness, IBS (from both extremes at different times in my life), heart palpitations, exertion headaches, a tendency to pass out easily etc. I was the kid who got dizzy a lot and had to sit down if I stood still too long getting my hair braided or at a concert etc.
There are two books that may be of interest to you. One is called Breaking the Vicious Cycle and the other is called Going Against the Grain. I own both if you'd rather borrow them. LMK if you do and I'll put them in Will's box. Here's some links on Amazon.
http://www.amazon.com/Going-Against-Grain-Reducing-Revitalize/dp/0658017225/ref=sr_1_1?ie=UTF8&qid=1330547858&sr=8-1
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?s=books&ie=UTF8&qid=1330547882&sr=1-1
Going Against the Grain is more of a paleo book, but it gives options as far as how strict to be (taking out gluten only, reducing grains, or eliminating grains). Breaking the Vicious Cycle is called the "specific carbohydrate diet" and it still contains dairy and legumes. Both were extremely helpful in understanding grain and how the gut reacts to it, why its hard to break down, and how things perpetuate (aka "the vicious cycle"). I get most of my recipes and such online, but the "why" and the explanations were what I love about these books.
There are also a ton of blogs about the paleo diet. Most paleo people are fitness nuts, and any time a recipe says "you may want to add honey but I really don't think it needs it." Trust me. It needs it ;) Also, when they talk about how their baked good (with no honey) was a big hit at the gym with their friends....well, that tells you something. Just fair warning ;) I know some good sites with good baked goods, muffins, cookies, etc. that a paleo and still taste good ;)
Paleo Comfort Foods is my favorite cookbook as of late. I have a zillion tips and tricks too that I've picked up along the way. I won't put it all here, if you aren't ready to take the plunge, but hit me up if you are. I know where all the best yummy stuff is, and I'm kinda cheap, so I know how to do things a bit more frugally (like grinding almonds myself to make almond flour because bob's red mill is a robbery on almond flour and I don't know how bob sleeps at night charging $12 for 2 cups of ground almonds ;)
ReplyDeletepaleo for a kid would be a bit more challenging, as they don't typically love vegetables as much as adults, but it can be done. also, I believe some people allow sweet potatoes, which would open the door to sweet potato fries, etc. also many people are paleo 80/20 or so, meaning they follow it 80% of the time. that kind of thing. I would assume even doing it some of the time would be easier on Will's gut. Oh, and Chik-Fil-A is a godsend. they have grilled nuggets now. and the fries are gluten free, or you can do fruit if you are doing paleo. anyhow, I have TOO MUCH to say on this topic as you can tell.
If you (or any other moms you know) want more info, I'm happy to spill even more beans.
XOXO
B
Im not sure about the gluten thing, makes sense though. I know that lactose intoleranance is a common thing with mito kids. We usually do a small dose of Miralax with the L Reuteri every day. We adjust the Miralax up or down as needed.
ReplyDeletewould revise my recommendation to just GOING AGAINST THE GRAIN. When I saw the price on amazon for Breaking the Vicious Cycle and then looked at my copy again last night...well, its simply not worth it. its a small book. half are recipes and they aren't great ones.
ReplyDeleteXOXO
B
Hey! We did the whole30 challenge and it was wonderful for us! Talk about losing weight and feeling amazing...but that paleo type of food that's much less restrictive and intense as the 30 day challenge is what you're looking for I'd imagine...whole9 had been a good resource and I've heard good things about the Everyday Paleo cookbook :)
ReplyDelete=) I think it's totally worth a shot! I hope it helps him, even a little bit! HEB, Whole Foods, and even Kroger have a great selection of gluten free foods and snacks! Call me if you try it and have any questions or need substitution ideas! Love you!
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