My 6-month Update: More or less "cured"

[Schroeder]

Originally Posted by k8e123

I can't imagine anything more difficult than limiting my diet...food, and especially, those starchy, fast-energy comfort foods, are one of my very feW remaining pleasures in life. So far this hasn't been very difficult, but the moment my cake craving hits, and the cake is right in front of me, I think it's going to be game over. My only hope is to remain sequestered for at least an entire week.

I did a 3rd day attempting gluten free today. Oatmeal again for breakfast (didn't realize this could be a problem). I'll visit Whole Foods tomorrow and see if I can find gluten free oats and maybe some other GF goodies to get me through a few more days of my "experiment."

Still felt terrible despite a full night's sleep and 10mg Dexedrine PLUS green tea in the morning, but I'm sure it's far too soon to judge.

One thing you can try is a 24-hour fast (fasting monthly is actually good for you). Basically don't eat for a day. Maybe try it on a Saturday - sleep in on Friday night, then skip eating on Saturday, then sleep in on Sunday, and see how you feel when you wake up. I always felt better not eating, which I didn't realize was a huge sign of food allergies. Granted it still takes a few days to clear the effects out of your system, but for me at least, I could tell a difference on a day when I didn't eat - my head was always clearer on those days.

Even my wife sees a huge difference. It's like I've "woken up" to the person I should be, rather than constantly fighting and struggling against myself. There's still the normal challenges of life, but it's oh-so-nice to be able to simple "do" chores without feeling like I'm going in the ring with Rocky, lol.

[CheekyMonkey]

Originally Posted by k8e123

I can't imagine anything more difficult than limiting my diet...food, and especially, those starchy, fast-energy comfort foods, are one of my very feW remaining pleasures in life. So far this hasn't been very difficult, but the moment my cake craving hits, and the cake is right in front of me, I think it's going to be game over. My only hope is to remain sequestered for at least an entire week.

I did a 3rd day attempting gluten free today. Oatmeal again for breakfast (didn't realize this could be a problem). I'll visit Whole Foods tomorrow and see if I can find gluten free oats and maybe some other GF goodies to get me through a few more days of my "experiment."

Still felt terrible despite a full night's sleep and 10mg Dexedrine PLUS green tea in the morning, but I'm sure it's far too soon to judge.

Bob Mill makes GF oats! Sometimes they are even at your regular grocery store.

I can't tolerate oats, even GF ones.

[quark]

Originally Posted by Schroeder

Yes, sleep causes brain fog even in normal people. Definitely not to the extent that we experience, but 4 hours of sleep = a useless day for me lol. I should also strongly note here that there is a difference between gluten fatigue and sleep deficit fatigue for me. As I mentioned earlier, gluten fatigue is brain fog + anchors on my bones...I just feel dragged down and exhausted and in a total mental fog. A sleep deficit fatigue is much more...managable. I just feel tired. I can still function though...I can still "push" and do things. I can say oh, I'm tired and I don't want to do the dishes, but then do them anyway, whereas on gluten doing that push would require me mustering every ounce of willpower I had available, and would be the hardest thing I would have to do all day. It's stupid and I hated it. I hated fighting myself for even the littlest things. It would have driven me absolutely bananas, but I didn't have the energy to get mad at myself or at it

Let me chime in here. I've had ADD symptoms my whole life. In my late teens I lost my lactose tolerance (normally - i.e. almost everyone not of northernish European descent - lost around age 6 or retained for most of life), started having episodes of that anchor-on-my-back type fatigue like you describe, in 20's starting gaining weight which I could not shed no matter what then developed acid reflux,, had bouts of insane stomach cramping/indigestion/etc. Then about 1.5 years ago the stomach pain came back as a a constant, along with bloating, constant migraines, irritability, uncontrollable reflux, gosh the list goes on. Anyway, one celiac diagnosis and adaptation of the gluten free diet later all that is gone. That terrible fatigue also vanished and I've dropped 40 lbs without even trying - some of that is due to ADD meds, but most is due to proper digestion and appetite. I then developed gluten hypersensitivity, not the most sensitive case I've heard of or met in person, but I'm really sensitive.

After going GF I discovered I'd been struggling with brain fog after it lifted and I returned to my usual ADD baseline. The brain fog is not the same as ADD-PI for me...it's more like massive confusion, like all the neurons fail to connect. I got lost trying to leave a restaurant once while on a major gluten-induced brain fog. I was standing in front of the exit door at the time!! I have found by accident that Vyvanse or Dex IR is very effective at holding the brain fog at bay for me while the med is active, whereas Ritalin didn't do squat for it.

There is a great recent article in the WSJ on gluten and various maladies:
http://online.wsj.com/article/SB1000...526292590.html
The current thinking is that wheat allergies and celiac disease are <1% of the population, and around 6% is 'gluten sensitive' the exact parameters of which are not well known.

This is going out on a bit of a limb, but I'd say it is not unreasonable for any ADD-er to check into food allergies or intolerances, particularly if medication isn't as effective as it should be. Many food allergies can seriously and subtly screw up the body.

One final note: these suck to have at the same time. Celiac and gluten hypersensitivity require constant eternal vigilance and attention to detail. ADD? Causes wandering attention and poor attention to detail. Sometimes eating causes me a lot of anxiety...

[TheChemicals]

Interesting. Im willing to try anything if it has a chance of helping.

[Lisa_Mac]

I also have the same intolerances to gluten. When I go off gluten products I have much more mental clarity and energy and my anxiety is much less but not completely gone. I still space out during conversations and all the other add things but I'm far more lucid and have better word recall, which is a huge problem for me. No doubt that it's gluten.

This week I've been eating lots of wheat products and the difference is horrible. Especially the brain fog. Ugh!! I'd been off gluten (well all carbs actually) for a couple of months.

[purpleToes]

Originally Posted by purpleToes

Schroeder, thanks for your replies. I'm inspired to keep it up a little longer, and maybe a little stricter.

Thought I'd check back in with you all and report the result of my experiment. I did two full weeks gluten free, and although it was tricky at times, it wasn't as difficult as I'd imagined, even being totally tired and foggy. I just stuck to simple and unprocessed foods for the most part, so I didn't have to do much label-deciphering. I love food and crave variety, and was still able to mix things up enough to not feel too deprived.

Bottom line, I didn't feel or observe any difference in my mentation, mood, activity level, or sense of physical wellness.

I was probably 99% strict as there was a condiment or two that had a questionable ingredient such as "natural flavors", and a couple of times that I ate from restaurants where cross-contamination can't be ruled out. (My favorite day was when I went to my favorite Indian restaurant and found out almost everything is gluten-less! I only had to skip the naan and samosas, but I was in food heaven anyway after more than a week of plain foods from home.)

So I can't consider the result conclusive, but I think I demonstrated to myself that I am probably not sensitive, or not very sensitive, to gluten.

My thinking is that at 40+ years old with no gastrointestinal problems (and a negative celiac blood test), I'm pretty confident I don't have celiac disease, which takes out of the gluten intolerant category. And if I were sensitive, I would expect a nearly complete elimination of the offending substance to cause some noticeable difference, which it didn't.

It was a worthwhile, educational experience. I hope to convince my mother to try GF to see if it relieves her inflammatory arthritis and psoriasis which she currently controls only barely with heavy-duty immune suppressant drugs. She might be more willing to try it now that I've done it and can report it wasn't all that hard.

[MyLogic]

Celiac Disease here.

Can't say it's cured ADD/ADHD symptoms. But I can say that after years of being gluten-free...if I have even a teaspoon of glutenated rice, I vomit horrifically for 3 days straight. Can't say it made my symptoms worse. But then again, in those situations, I'm too busy concentrating on staying alive and not passing out.

[choco222]

I've tried all sorts of diets including a gluten free one. Didn't help at all.

It's definitely worth it though to try some diets to see if one is allergic to something.

[Drewbacca]

Likewise, I was gluten free (and dairy free) for over a year with not noticeable benefit.
I'm not sure why the OP says that there is no test, there is... http://ibstreatmentcenter.com/ibs/fo...ood-allergies/

[Schroeder]

Originally Posted by Drewbacca

Likewise, I was gluten free (and dairy free) for over a year with not noticeable benefit.
I'm not sure why the OP says that there is no test, there is... http://ibstreatmentcenter.com/ibs/fo...ood-allergies/

As mentioned in the original post, there's a test for Celiac's disease, but there is no accurate & definitive test for Gluten Intolerance. I did the IgE test and it showed absolutely nothing. I have met several people with Gluten Intolerance with similar results - it's really hit-or-miss with the tests. Which was really frustrating because a lot of doctor's aren't really "up" on food allergies & will tell you it's 'all in your head, get over it', which is even more frustrating - plus I've seen shrinks, counselors, ADD specialists, taken meds, read self-help books, you name it, to try to fix my problems and it wasn't until making a major self-guided life change in the food department that I got any relief.

I have also gone off corn, which has helped with the rest of the fatigue. So no dairy, gluten, or corn for me - a big life change, but I don't even care a little (okay, maybe a *little*) that I can't eat the old foods I used to eat - I have all-day focus abilities now!! The only reasons I get tired now are normal reasons - like if I eat ridiculous amounts of sugar, if I stay up really late, if I work a super long day, etc. I don't get tired from food anymore and I don't just drag 24/7/365 like I used to. It's been a tremendous life change for me.

I hope this thread helps some people out...I know it's not going to be the root cause for everybody, but I went nearly 30 years struggling with ADHD-I, come to find out that food allergies was the culprit. And of course, any time your body goes haywire, you're going to have similar results - brain fog, lack of energy, etc. My friend's dad's health dropped off the map in a similar way a couple years ago, and he discovered that he has M.S. - I think human bodies just react in similar negative ways no matter what the root cause is (the usual fatigue, trouble focusing, etc.) for a lot of things.

Now that I'm not fighting off exhaustion & struggling to keep my focus constantly, all of the old stuff I've tried actually works - calendars, laundry baskets, etc., even simple things like that are manageable. I no longer stare like a caveman at the dishes or laundry, struggling to summon up the willpower to get them done (okay, well sometimes, but that's just laziness talking lol). I can stay up until midnight working on a project, wake up the next day at 6am and be absolutely fine - tired, but extremely functional. Tired is no longer "death fatigue" - it's more of a hassle than a life-stopping event.

I wish everyone the best. I'll still pop in now & then!

[Schroeder]

One thing I forgot to mention - gluten made me cold ALL the time. Especially my hands & feet. Heck my hands were ALWAYS cold, and I'd wear a jacket even if the weather was in the 60's. No gluten = normal body temperatures, fwiw.

[oneup]

I did gluten free but didn't notice a benefit. I did the low salicylate diet for about 3 or 4 weeks though and noticed more energy, both physically and mentally every day, and overall better mood, starting on week 2. That diet is even harder to do than the gluten free diet though, and I still had ADHD overall. I might try it again though, for the energy benefits.

[fracturedstory]

Gluten has the opposite affect on me. I get stimulated and hyper. I am kind of a hypoglycaemic and I'm not exactly eating the right bread to keep blood sugar balanced. And chocolate bars are probably not good for me. Or Nutella sandwiches.

Even lack of sleep makes me more hyper the next day. I'm more sluggish if I go to bed late and sleep in late. Poor sleep and early getting out of bed makes me more forgetful, hyperfocusing, inattentive, impulsive and struggling to focus. Obviously from being hyper.

[russ86]

Originally Posted by Schroeder

One thing I forgot to mention - gluten made me cold ALL the time. Especially my hands & feet. Heck my hands were ALWAYS cold, and I'd wear a jacket even if the weather was in the 60's. No gluten = normal body temperatures, fwiw.

I wasn't entirely convinced to even try this until you wrote this post I quoted. I have most all the symptoms you listed in your original post and I too always have cold hands... Do you, or did you, ever have what doctors refer to as 'Benign tremors' or 'intention tremors' in your fingers. Basically its small but abrupt shakiness in the fingers anytime you try to do something with fine motor skills... like tying a fishing knot or something like that. Or did you have any problems with fine motor skills? Also you said you were cold easily... did you have any sensitivity to heat or hot weather/easily fatigued from rise in body temperature?

Edit* Also, I'm currently on Adderall, it's a love/hate relationship. If I try this Gluten free thing, would you suggest I keep taking it, or try it without taking it?

[Slo-mo a-go-go]

Interesting reading all your experiences. Obviously gluten free helps some people's ADD and not others.

ADDifficulties in writing means Ive been typeing for over 3 hours.
I'm trying to summarize and not ramble bc it's ADD chivalrous.
But I stink at summarizing!! But on the plus side I came up with a great movie idea and wrote it out and it's really funny! [Reminding myself of the good not just the bad!]

I feel the need to weigh in but as I still trying pick &glue down the relevant details, I'm just say one thing now, and sleep on the details so the swirling sentance fragments can settle down.

I discovered my gluten allergy 10yrs ago. But with all the GF diet hype right now, the hype's emphasis on GF is disturbing me.

Ughh still 40 mins later, no me post yet so here it is folks:
Elimination diet!! Look it up! Avoid eating a common food to see if your symptoms cease or decrease, then add the food back in, see if symptoms reappear or worsen. Could be gluten, soy, dairy, or corn.

Here's a great summary from Wikipedia:
"An elimination diet is a method of identifying foods that an individual cannot consume without adverse effects." "An elimination diet relies on trial and error to identify specific allergies and intolerances. Typically, if symptoms resolve after the removal of a food from the diet, then the food is reintroduced to see whether the symptoms reappear."

So more to say but my track record for writing in depressing me,
but here's the last thing-----gluten free means no beer, I have a very strong allergic (&miserable) reaction even after a taste. I hate missing all those delicious mircobrews and having that 1 beer warm feeling! Just
having one beer at a party did so much for me, offering or asking someone for a beer opened conversations & gave me something to fiddle with.
Quick thnx & sign off, its almost been 5 hrs to write this!!! Executive (help needed to manage my) functioning!!-
Slo-mo-a-go-go