A Very Personal Reason To Go Gluten-Free

Those of you who read here regularly, or listen to the podcast , may know that back in the late winter I was diagnosed -- at the age of 52 -- with ADHD. I in no way doubt the diagnosis; I'm a textbook case. That one bit of knowledge made a whole lot of other pieces of information fall into place -- or as I've been saying, "Suddenly my whole damn life makes sense."

I have a number of co-morbidities of ADHD -- health problems commonly associated with it -- including Seasonal Affective Disorder and Delayed Sleep Phase Syndrome, a sleep disorder. Food addiction and obesity are also more common in those of us with ADHD, so my past history of stealing from my parents to support a rampant sugar addiction isn't surprising.

But a while back, I learned of a comorbidity of ADHD that scares the ever-living crap out of me: Lewy Body Dementia. What is Lewy Body Dementia? It's a form of dementia that combines the fun of Alzheimer's with the thrills of Parkinson's, plus lots of vivid visual hallucinations, just for the entertainment value. Turns out LBD is a lot more common than doctors realized till recently, because it is often mis-diagnosed as either Parkinson's or Alzheimer's. No one's exactly sure what the rate in the general population is, which sucks, because that's a bit of info I could use, since I have read that AHDH puts me at triple the risk of the general population. If the overall rate is, as some say, only 0.5%, then my risk is 1.5%, not so scary. If the overall rate is 5%, as some estimate, then my risk is 15%, a whole lot more frightening.

But it occurs to me, having read Wheat Belly, that gluten sensitivity is linked to both dementia and ataxia -- the sort of coordination problems common to Parkinson's. Further, while wheat doesn't seem to be the cause of ADHD (the two front runners appear to be heredity and maternal iodine deficiency), foregoing wheat does seem to help calm the symptoms.

Knowing this, it does not seem like a big leap to the hope that avoiding wheat and gluten may, at least to some degree, reduce my risk of winding up in a locked door ward. I watched my brilliant and spirited mother die slowly of dementia. If there is any chance that avoiding gluten can prevent anything resembling that end, it is a very small price to pay.

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Going Gluten Free

Hi Dana, I am reading and enjoying very much your book on losing the low fat diet. This blog entry caught my eye as I write a blog about gluten free and allergy free living (I have a celiac and allergic child).
The gluten free/casein (a protein in dairy) has been used more and more lately to treat not only ADHD children, but also children on the Autism spectrum with great success. I wish you luck on going GFree!

www.theglutenfreemaven.com

gluten and other ailments

Hello Dana!
I just stumbled on your blog, and thought I'd give you some more information about the gluten connection - the protein in wheat, barley, and rye.

Not only is it a contributing factor - not causal, contributing - for ADHD, arthritis, and dementia, but gluten can also exacerbate multiple sclerosis, a myriad of skin and intestinal disorders, bipolar and other personality/mood disorders, chronic fatigue, and autism (among others). The connection with autism is so strong that if a gluten-free diet hasn't already been adopted, you're not paying attention! Gluten intolerance can also be caused by tick diseases, and avoiding gluten will help minimize other symptoms of tick diseases.

It's also important to know that simply limiting your gluten intake can help in many ways; you don't have to cut it out completely. Wheat was introduced into our diet only about 700 years ago, and since then has been modified so that the gluten content of wheat is around 300% more than the original levels! Not to mention they put it in everything, like corn products. Our bodies haven't evolved to be able to truly digest it yet.

I started finding out about gluten about three years ago when I first started having problems. In addition to the bodily symptoms, I was clearly and quickly losing my mind. Since then I have started a gluten-free and vegan bakery - the number of people who have been searching for this is incredible!

To moms who want to help their kids: try things like hummus and carrot for lunches, cheese and nuts - the finger food will be so fun they won't care that they don't have a sandwich like everyone else. Quinoa is a fantastic grain - a complete protein and extremely easy to make and use instead of pasta, for both hot and cold dishes. If you're feeling adventurous, check out The Allergen-free Baker's Handbook by Cybele Pascal. It contains fantastic, easy recipes as well as lots of information about alternative ingredients. More and more tolerable gluten-free products are being introduced into the mainstream food system.

Check out my bakery at www.AbiliciousBakery.com - and if people have questions I'm happy to answer!

Thanks for putting your experiences and wisdom on the web, Dana!

I don't know about Lewy Body,

I don't know about Lewy Body, but my mom developed what was eventually diagnosed as Alzheimer's at the age of 56, and had a long slow decline for over 20 years before she passed away. She never met a carb did didn't adore, including all sorts of flour/sugar products. She had a major sweet tooth.

I've done my best to be gluten-free for about 3 years now, though I have had a few lapses. During that time I also god diagnosed with Hashimoto's disease. But the nurse practitioner I see feels my low level of antibodies for Hashi's is due to my gluten-free diet, and says there is a strong correlation between gluten intake and active Hashi's. So those two things both give ME a good reason to stay gluten-free also!

Beer

Dana, I know you enjoy a beer. Don't most beers contain gluten? And I bet gluten-free beers are as quaffable as alcohol-free ones - bleuch!

Beer

I do like beer, but I've dropped it pretty much entirely in the past couple of years, out of a general sense that grain was not my friend. I generally drink dry red wine. I'm quite fond of tequila, but drink it way, way less often. And this summer, when it was really hot, I drank homemade sugar-free limoncello with chilled lemon or cran-raspberry sparkling water, which was very refreshing. But I don't remember the last time I had beer.

Of course, I'd only been drinking light beer for years and years anyway.

ADHD & genetics

Hi,

I've only recently started to read your blog (I found your yogurt directions...thanks for that, it turned out great!).

Anyway, I just wanted to say that as you mentioned there is a strong genetic component of ADHD, and from what I've read, there's a strong correlation between having ADHD if your Dad has it (as opposed to either parent).

I was also diagnosed ADHD as an adult (I'm combined type, so I get to be inattentive and impulsive ). It wasn't a shock for me either, and truly was a bit of relief. It takes the judgement out of how I look at certain actions. Which of course doesn't mean that the ADHD is an excuse, but my actions don't seem like moral failures now, but just something I messed up that I need to figure out how not to mess up in the future.

I did try a no gluten trial, but didn't notice a change in symptoms or really any change (except I missed my english muffins!) so started eating gluten again.

All the best,
CuriousMe

ADHD

Yeah, my reaction to the diagnosis has been "Suddenly my whole life makes sense." And I joke about having an excuse for everything now. (I have a friend who's a social worker doing counseling, he tells me everyone with ADHD uses it as an all-purpose excuse. See? Using it as an excuse isn't my fault! ;-P )

Interesting about the Dad connection; I do think my Dad had it. And yeah, I'm a combined type, too. What, you mean my willingness to say just about anything to just about anyone isn't indicative of courage, but of a lack of dopamine in the prefrontal cortex? Bummer.

I haven't noticed a big difference without gluten, but then I haven't been eating much wheat for over a year anyway. Last time I ate low carb tortillas, though, I did notice a difference; I felt hung over for a day. But it's really the Lewy Body Dementia thing that scares me.

Lewy Body Dementia

I've work with people with dementia, and I hadn't heard this information before.

From what I understand the correlation was observed in one study, and persons were sort of retroactively given the ADHD diagnosis? That part immediately interested me, because it is rare to see an elderly person with a history of such a diagnosis. I also thought it was interesting because diagnosing dementia is sometimes an inexact science.

It'll be interesting to see if these findings are replicated in other studies.

ADHD and Dementia

Yeah, when I was a kid no one had heard from ADHD, I was just an "underachiever." (Still am. At least now I have an excuse.)

It seems to me, though, that rather than an A causes B relationship, it's more likely something like gluten sensitivity, or, as one woman I've been reading suggests, a reacting between gluten antibodies and various infectious disease organisms, that influence both, you know? Just like excess carbage can cause high blood pressure AND high triglycerides AND diabetes, etc.

But it does seem that I've had an off-brand brain from the very beginning. The assessment the doc gave me included the question "Were you breast fed?" The answer to which was "No, my mom tried, but I wouldn't hold still long enough." XD

Underachiever?

In what sense have you underachieved? Good grief, woman.

Underachieving

You just see the stuff I get done. I see all the stuff I start and then blow off or space out. :-/

Kid's lunches

Hi Dana:

My husband and I pretty much eat paleo, but are kids are not there yet. Mainly because it's difficult to pack school lunches without bread. Do you have any resources for lunch menues that would appeal to kids? Keeping in mind that all of their classmates will be eating mainly flour in it's various appealing forms.

Several years ago I found

Several years ago I found out, quite by accident, that gluten gave me severe arthritic symptoms, along with depression, confusion and exhaustion.

I found this out by going on a low carb diet for weight loss in the early 2000's. In a matter of two weeks all symptoms went away. I connected this improvement to lack of carbs, but when I started adding in low carb but gluten laden products, (for example, Atkins Bake Mix), my symptoms came back.

I have since evolved to the South Beach Diet by Dr. Agatston. Interestingly, in his book South Beach Diet Supercharged, he talks about how many folks feel fantastic on Phase 1 of his diet, but when they start adding in limited grain products on Phase 2, they start feeling crappy because of the gluten. Dr. Agatston is one of the first "diet" doctors I know of to really talk about the relationship between gluten and health. In his new book coming out in October, South Beach Wake Up Call, I read he goes into detail about gluten and inflammation. I am so glad this is finally being acknowledged! I can't wait to order Wheat Belly from Dr. Davies on amazon.

Dana, now you have the challenge of coming up with some great gluten free bread/cake/etc. recipes for us! I so look forward to that! I have been successful in creating bread recipes from flax, whey, soy protein powder, coconut flour, etc. It certainly can be done.

Sure hope you start on a gluten free low carb cookbook soon!!!!

Love your blog. Keep up the good work.

P.S. I would like to add that

P.S. I would like to add that gluten is also found in many unsuspecting products like soy sauce and oats among others. Gluten is not specific to just wheat. For example, oats are naturally gluten free but highly contaminated because they are grown in fields along with wheat, and the contamination is apparently intense. There are gluten free oats available, grown in special oat fields. Of course if one avoids oats, it's a moot point. But I can eat limited amounts of gluten free oats in phase 2 of South Beach.

I am so vigilant about products, and it's really paid off! My health has never been better. So glad you jumped on board.

Infection?

Hi - I've been reading Paul Jaminet's blog recently (Perfect Health Diet). He says there is evidence for an infectious origin for most neurological diseases, like Alzheimer's. He did a whole post on how to cure these infectious diseases, here: http://perfecthealthdiet.com/?p=134

Infectious origin for dementia

Thanks, I'll read this. I've also read the work of a woman who asserts that a lot of mental problems are caused by the confluence of herpes -- which most people carry in one form or another -- and gluten antibodies. Interesting stuff.

Multifactorialism strikes me as likely. My mom's dementia was triggered by a head injury, and it turns out that's all too common.

Rate of Lewy Body Dementia

I have much respect for UpToDate.com (a service for which I pay $400/year). Here's a quote about LBD from UpToDate:

"EPIDEMIOLOGY — In clinical and pathological series, dementia with Lewy bodies (DLB) accounts for approximately 10 to 22 percent of dementia cases. This is consistent with an estimated prevalence of 0.7 percent for individuals aged over 65 years.

Like Alzheimer disease (AD), dementia with Lewy bodies (DLB) becomes more prevalent with age, generally affecting individuals in their sixth decade or older; the mean age at presentation is 75 years. In contrast to AD, there appears to be a predilection for men, as high as two-thirds in some series."

Those are probably the most reliable numbers you'll find.

-Steve

Hard Numbers

Thank you. That helps. :-D

gluten free and diabetes

I started going low carb 4.5 years ago when I was dx'd with diabetes at the age of 56. I have to admit I am a carbaholic. I ate healthy but I preferred whole grain breads and fruits to any junk food. Now that I test my bgs often I have found the relation to high bgs. Giving up bread was hard. I find the Eziekel Sprouted grain bread gives me a much better bg but it still has gluten. I think the reasoning is the sprouting process uses up the starch in the bread. I have been doing the almond flour , flaxseed and coconut flour breads but they come out more like quick breads. Very difficult to toast. I was using the Flat Out Tortillas but do think they have wheat in them, bummer. They don't spike me though. My mom found out in her 70's that 20 years of GI distress that doctors told her was all sorts of things was due to certain additives in commercial breads. She continued to make her own bread in her bread maker which did have some gluten. She now has Parkinsons and early stage dementia. That has me thinking now.