Saturday, February 16, 2013

Food Struggles Update and Next Steps

This may be of interest to those of you with food sensitivities and allergies.

My son made it eleven days on a diet where he was eating meats and vegetables only. He did crave sugar but had no other signs of candida die-off so I don't think he had candida overgrowth. On day seven he cheated with wheat and was so exhausted he had to leave his robotics team meeting early and spent the rest of the day with severe fatigue, such as you feel when you are sick with flu. On day eleven he quit the diet altogether.

After the bad reaction to wheat he swore off wheat but 48 hours later was in denial and said it wasn't bad. He resumed eating wheat and his body built up a tolerance. He gets tired when eating wheat every single time. When eating it in small portions or eating it with dinner he can manage the crashes better and pass it off as end of day tiredness, or after practice tiredness. He refuses to stop eating wheat so he meters out small portions, such as eating just one roll a day with ham as a sandwich, or a smaller portion of pasta than he ever used to eat. We are unsure if the issue is the protein in wheat or if it is gluten. Oats and other grains have gluten so if gluten is the culprit it's a bigger animal. (I am avoiding buying gluten free foods to replace wheat because a lot of them are full of soy or added sugars; my son still seems to flip when he eats soy such as soy flour in a storebought bread.)

He has been eating sugar laden foods only 1-2 times a week such as a piece of birthday cake at a party or a couple of cookies. That didn't go so badly but the Superbowl party with the Dairy Queen ice cream cake that a guest brought was a complete and total disaster with a major meltdown, a rage, slamming doors, yelling profanities, and an inability to calm down even when the very small issue was resolved, then it was followed by a major crash, emotional moodiness and then crashing to go to sleep. That was the first time that he ate ice cream since the last rage (2.5 months ago) which was ice cream/protein shake induced.

I am upset with our pediatrician of the last year and a half, every single visit we've had has had one issue or another, either we don't see eye to eye or their staff does something like screw up the blood draw on my son with big veins, or made us wait two hours for just a vaccine, so we changed practices yesterday. The final straw: my son's pediatrician denies that food can affect behavior, mood, or physical feelings, and since he thinks an endocrinologist consult is unnecessary. As of yesterday, my kids now go to my general practitioner who sees all ages. She is down to Earth, kind, talks to me like I am a real human with a functioning brain and has decent office staff who can acutally do their jobs well.

At the Scout physical she asked my son to tell in his words what happens when he eats certain things. He explained that he feels that any kind of refined sugar makes him irritable, moody, and tired, such as desserts, sugar added to breakfast cereal, Frappuccino, candy and sweet drinks, as well as energy drinks or electrolyte drinks used at sports. I was shocked by that as he had not admitted to me that he feels that way from sugar. He also explained that ice cream, cow milk, and cream cheese seem to affect him badly but not blue cheese dressing parmesan, romano, or a slice of American cheese on a cheeseburger.

The new doctor has recommended that my son to see an endocrinologist to rule out diabetes, pre-diabetes, or issues with adrenal depletion due to past Lyme Disease, Mono, and chronic tonsillitis. If my son is having issues with insulin levels it could explain the changes that occur after eating white flour products and foods with sugar in them.

My son has decided to eat more vegetables which for now means he eats 3-6 small heads of romaine lettuce a day as a salad. He also eats one banana a day but avoids all other fruits. He meters out the wheat in small portions. He finally has realized that the problems he has from food is not worth consuming those foods. Avoiding certain foods means even more processed foods are off limits so he is eating more whole foods than ever, which I know is ideal anyway, but which is hard to do with independence-striving teens who are offered all kinds of crap food at parties, gatherings, sport events, and club meetings.


christinethecurious said...

Hi Christine,

Had to drop a note - though I don't have much to say!

I was just diagnosed with celiac, and my 9 year old has noticed I'm more patient without the gluten. It's good your son is owning his problems - at least to the GP.

There are non-soy gf flours, Bob's Red Mill gf flour mix used garbanzo,not soy. I've found lots of good suggestions and recipes at the Gluten Free Girl and the Chief blog.

What a year you guys have been having! I pray for you whenever I read another post.

-Christine in Massachusetts

Xa Lynn said...

If your son wants to get to the point that wheat doesn't bother him anymore, he needs to not eat it AT ALL for a couple years. Then try a small amount, gradually increasing. This eating a little bit of it all the time thing is going to keep the reaction going forever. So I am told, anyway. I manage to go about three months at a time, then I fall off the wagon, have a nasty reaction, swear it's not worth it, go three more months, forget how bad it was, eat something I really love (rhubarb pie!), and pay for it for the next two weeks. I keep trying, but I swear gluten is like crack or meth. It doesn't help that the non-gluten sensitive people in my family bake fresh bread in my oven, either. My 9 year old is much better about avoiding gluten than I am because she doesn't actually like being little Miss ODD, which is how she acts when she has any. I'm sorry your family has to deal with this, too. I wouldn't wish it on anyone.

lettersfromnebby said...

I symptahize. We also have a lot of dietary restrictions around here--3 of 4 kids gluten free and one also off soy and dairy. And my 4th has type 1 diabetes. Of course you should get your son fully checked out but it doesn't sound like he has diabetes (type 1 or 2) or pre-diabetes to me. I woudl think some kind of gluten intolerance (celiac is just ione of many ways to not handle gluten well) sounds more likely. And perhaps other ones in the bargain. They sat the proteins in dairy and soy are similar to those in wheat so they often go together.