Long time, no posts.

I was a bit confused when Blogger insisted that I confirm my profile name.  The page gave me the impression that it hadn't signed me into my own blog.  I mean, seriously, I wasn't planning to change the name I was posting under . . . at least I don't think I was.  I could have changed my mind years ago and just don't remember now.

Anyway, one update on the gluten-free stuff.  Same sister who brought the problem to my attention, also found a supplement that actually lets us eat gluten on occasion with little discomfort, about a year ago. So I can eat those foods again every so often, though now I have to avoid sugar more.

I think I have figured out why cat videos are so popular on the internet.  Pre-internet video posting, when I tried to explain how cool cats were to my dog loving friends, it was frustrating because cats rarely do things on command. (The same can be said of many humans, I must point out.) So, my dog friends didn't believe me when I tried to tell them that my cats were affectionate and clever.  That's because cats are independent souls who believe in their own privacy, even though they don't give a damn about yours.

But now we can share our cats private behaviors and prove that we aren't just making this stuff up.  It's liberating for us cat lovers, as well as enchanting for those who've never experienced cats firsthand.

Blow your preconceived notions of cats with this:
https://www.forbes.com/sites/robertglatter/2017/04/29/how-a-maine-coon-cat-helped-a-young-girl-with-autism-overcome-her-fear-of-water/#268f9afc85f1

Where I almost give up hope and then find out there may be a better way

There comes a time when you want to say "screw it" and do what make you feel less sick.  But then a light shows up and you realize that maybe it's not as bad as you feared.

Recently one of my coworkers noticed that I was eating gluten-free.  With a knowing smirk and crossing his arms, he asked me what happens to me when I eat gluten now.  I told him I curl up in a fetal position and wish for death, before dragging myself to the bathroom for my digestive system to try and rip itself apart for several hours, and it takes about 24 hours before I feel anything close to normal.  He opened his mouth, closed it a moment, nodded his head with a chuckle and said, "You have the very same symptoms my mother has, and she has Celiac's.  You probably have it too."  Since then, he's been telling me about restaurants with good gluten-free food and offering all sorts of advice.

It made me feel a little more confident that my plan to take a week of vacation to eat enough gluten to show up in a blood test.  I mentioned it to my sister, who said that you really should be eating gluten for two weeks, but even then her tests weren't positive because she has an over-active immune system.  My inner skeptic wanted to come out and argue, until I remembered how long it took one of my doctors to find the right level for a drug in my system because my liver metabolized it so fast.  I also remembered that according to the 23andMe DNA reports, my sister and I have identical immune systems - we share all 359 SNPs currently identified as affecting the histocompatibility between us.  But then, even though we'd make greaet organ donors for each other, my sister and I have differing lifestyles.  Maybe it's possible that I wouldn't need to eat gluten for so long.  I mean, I could hope, because I honestly don't see how I could handle being sick for so long.  It's not like I have a secondary income to rely on while I deliberately make myself sick for a diagnosis.

Today at church, I ran into another person who did the same thing I did - went on a gulten-free diet out of frustration, only to not be able to eat it in any form now.  She went back to eating gluten for over a month and her test still wasn't conclusive.  Her doctor told her that it can be very hard to get a postive test, even for those who had tested successfully for it previously after going on a gluten-free diet for several months.

Obviously, I needed to do more research on this test.  So, I checked http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ and read the following:

"Keep in mind that positive antibody or genetic test results only suggest the presence of celiac disease—the test results cannot confirm it. If these screening tests come back positive, the next step in diagnosing celiac disease is to get a biopsy of the small intestine."

In short, to really prove it the doctor has to see damaged villi.  According to the page that covers the biopsy: "For biopsy results to be accurate, you must be eating gluten (at least 4 slices of bread) for one to three months prior to the procedure."  

I was about to give up hope, when I read that you can also be diagnosed by testing positive for dermatitis herpetiformis.  Looking at the pictures, I had a major outbreak of this about three years ago.  The skin in the area is still scarred and I pretty certain I have an active patch on my back, which drives me nuts.  In that case, I only need a skin biopsy to prove I have Celiac's.  Talk about being thankful for weird things.


Did a little more thinking and research.  According to my mother and her step-mother, I had horrible colic as a child until my mother's step-mother put me on 2% milk.  For a moment, I wondered if maybe I was reacting to the gluten in breast milk, because my great aunt told me that I would let other people feed me without any problems, but I would scream bloody murder when my mom tried to feed me.  However, after reading this from the University of Chicago Celiac's Disease Center, I'm thinking that it wasn't from the gluten in the breast milk.  It probably wasn't gluten related at all.  However, it is possible that when I was at my grandparents' house I only had rice cereal, and when I was at home, I was occasionally fed Cream of Wheat.  Mom's no longer around to ask and Dad doesn't remember after almost 50 years and four other children.  On the above website, I did read: "A large prospective study conducted in Colorado showed that if gluten is given to the infant too early (i.e. during the first three months of life), this highly increases the risk of subsequent onset of celiac disease compared to the infants who were first given gluten around four to six months of age."  So, it's a possibility, because I do know that we occasionally fed our infants Cream of Wheat in our family.  And it's not like this information was available then.

The Demon of Reactive Formation

Reactive formation - defending against an impulse by actively expressing the opposite impulse.

Yeah. That thing. The thing that makes us do stupid things in an effort to avoid doing something that we feel is undesirable. Also referred as over-compensation - not to be confused with normal compensation, where we focus on our strengths to make up for our weaknesses.

An example of normal compensation - when I took my studio art classes in college, I took longer to make individual artwork because I have impaired short-term motor memory. I can achieve techniques, but it takes longer for me to do them than my much younger and more dexterous classmates, or my more experienced friends.  I was able to compensate for this by my ability to visualize and come up with ideas faster.  So while my classmates were still trying to decide what they were going to create, I had already chosen from several roughly sketched concept drawings what I was going to do.  And by the time they had decided what they were going to make, I was already hard at work on my project.  My design teacher mentioned that he sort of had to teach me in reverse of his other students, because I had the ideas and understood the concepts of design, but I didn't have the manual expertise of the rest of his students.

Of course there are less healthy examples of compensation.  Like when someone uses their success in their career to excuse their lack of social skills. Or makes pronouncements of fact when they lack of knowledge in an area outside of their expertise.  Such are the things that "appeal to authority" logical fallacies are made of.

But back to reactive formation.  This can be used in a healthy way - like when you are dealing with someone difficult, who can't help it (or even if they can), and you respond by being extremely sweet and helpful to them, when you would love nothing more than to slap them upside the head and tell them to stop being an idiot.  Many people owe their lack of injuries and possibly their very lives to the fact that several of their fellow humans use this psychological defense mechanism.

Now to the point of this little blog post.  I just realized this week that I have pretty much done something rather ignorant and foolish because a personal reactive formation pattern.  It's not impossible to correct, just difficult and requiring some planning and vacation time.  You see, I am a daughter of a hypochondriac.  In fairness to my mother, she did has several legitimate health issues, but she prefer her own diagnoses to the doctors'.  My mother constantly poured over medical books to find illnesses she could claim to have.  When I was 12 years old, it was discovered that I had a curved spine.  My mother decided that I had sclerosis and made an appointment with our family physician, an osteopath named Dr. Bishon.  Good so far.  Then Mom decided that in the days before the appointment, we needed to go to the mall and look for clothes that would work with a back brace. We went to like six different clothes stores and two or three fabric stores over the course of two days.  At first I was very nonchalant about the whole thing.  I knew my mother's flair for the over-dramatic and just accepted my ordeal with all of the reluctant grace a preteen could manage.  However, I had a friend at school who did wear a back brace.  Her name was Victoria and I think that even without the back brace, she would have had an air of gentle formality to her.  While we were browsing the racks (we didn't buy any clothes or patterns during those two days), I had to occasionally point out that some of the clothes Mom was thinking of putting me in would not work if I had a brace like Victoria's. After all those hours of listening to my mother's dire predictions of my future, my calm because eroded.  Even though I had no problem with the idea of the brace - I had great respect for Victoria, after all - I succumbed to my mother's paranoia.

I was terrified when we went to that appointment that Monday morning.  After doing the normal vital signs checking stuff, Dr. Bishon's nurse had my back x-rayed.  Then we sat in the examination room, while my mother continued her narrative on how all of this was going to rule my life, up to and including having a family of my own.  After what felt like an eternity to me (though it was maybe 20 minutes), Dr. Bishon came in, talked to me a little about how I sat when I read books, and then had me lie on my left side.  He then pushed my shoulder forward and pulled my hip back.  There was a cracking noise and when he had me stand in front of a mirror, I could see that I was standing straight again.  He explained that I wasn't suffering from sclerosis; I was suffering from reading books, while sitting in bad posture in our sofa chair for long periods of time.  He made me promise to use better posture when I got into a really good book, and then sent me on my way with a huge smile on his face.

Back in our car, I was absolutely furious with my mother and told her to never, ever do that to me again.  It might be worth noting that she had completely forgotten the incident by her 60's, but then maybe not.  For me, however, the event is deeply carved into my psyche as something to be vigilant against experiencing again.  I "compensated" by going through medical books like my mother, but instead of having the intent of proving to myself that I had this or that condition, I approached it from the direction of disproving that I had serious conditions.  I was very much in this mindset when I first started noticing signs of Celiac's disease in my late 20's.  And I very successfully convinced myself that I didn't have enough of the symptoms for long enough periods to have the disease - despite the fact that nowhere in the description I was reading did it say that you had to have these symptoms continually.

So, when my sister brought up the possibility that I may have a problem with gluten, I really didn't believe her.  More precisely, I didn't want to believe her.  However, I do love her and recognized that she was really worried about me, so without bothering to re-research Celiac's disease, I figured it wouldn't hurt me to go gluten-free for a little while to make her feel better.  I didn't have health insurance at the time, but to be honest, even if I had, I probably wouldn't have mentioned it to a doctor because I had spent so many years convincing myself I didn't have the condition.  I did do just enough reading to realize that I would have some bloating and headaches when I did go back to eating gluten, but I was okay with that - it didn't really sound much different to what happens when I re-introduce beans into my diet after a long period of not eating them.  It was a massive shock to me when several hours after I ate that one little piece of garlic bread, I was curled up in the fetal position feeling as if my bowels were trying to tear me apart.

Still, I wasn't quite ready to accept the possibility of Celiac's disease.  But I began to revise my feelings on the matter when friends started to bring studies to my attention about gluten intolerance and Celiac's.  In one of the more publicized studies of gluten intolerance, I read the description of the self-reported symptoms and realized that not one of them included explosive diarrhea or wishing for death because of severe cramps that lasted several hours.  Then this month, a friend of mine was hospitalized multiple time, while the doctors tried to figure out what was wrong with her.  I looked up several of the conditions they were trying to rule out on the Mayo Clinic's website, and a little voice told me that I really should look up Celiac's disease again and at least see about getting myself tested for it, so I could get a professional diagnosis as to whether I had it or not.  The first thing that struck me was the fact that in the two decades since I first read the symptoms of Celiac's disease, I had exhibited many more than I had remembered.

The second thing that struck me was that to be successfully tested for it, I need to be eating gluten for about a week before I'm tested - with the warning that you shouldn't go on a gluten-free diet before being tested first.  In short, I've screwed myself with my own denial.  However, it is still possible to be tested.  I will need to discuss it with a doctor before I eat gluten for the test, and I will need to take a week of vacation so I won't have to worry about missing work because I can't leave the bathroom.  So, probably sometime next February I will get myself actually tested.  And if it's negative, I might ask if there's a better way to get used to eating gluten again.  I really miss cake donuts and KFC.

Your Genes are Not Your Fate

If you're not convinced by my previous posts that you do have some control over your genetics, here is a talk by Dr. Dean Ornish...

And here's a talk by Craig Venter, that he references at the start.

"Craig Venter and team make a historic announcement: they've created the first fully functioning, reproducing cell controlled by synthetic DNA. He explains how they did it and why the achievement marks the beginning of a new era for science."

A Few Things I Learned Cross-Referencing My Limited DNA Results with the SNPedia database.

Okay, in an effort to have some concrete data to show me, my sister Serena offered to pay for a saliva DNA test.  She explained that it couldn't conclusively prove gluten intolerance, but it was the only test she could get for me without scheduling an appointment with a doctor, which would have been difficult since we live in different states and I have a weird work schedule.  By the time my birthday/Christmas came around, I had already found my own concrete proof that she was correct, but she went ahead and ordered me the test anyway because I have an interest in geneology.

And it's been fun exploring those results; however, it's obvious that there is a lot more research to be done.  Many people with documented Native American ancestry, don't show up as Native American, for one thing.  And I don't come up as Asian, even though several genes that contribute to my skin-tone are more common in south-east Asia than anywhere else.*  Of course, the only sure genealogical lines you can test for is your matrilineal line - and if you're male, you have your patrilineal line also.  I know my patrilineal line only because my sister had our dad take the test and I got that information from him.

Anyway, I decided that since it was my DNA, I needed to have a copy of my raw results, so I could have it analyzed better in the future.  I had a heck of a time finding out how I could download that information. Scouring the forums, I found a site that could cross-reference your results with the SNPedia database, and visiting the site, I found the extremely easy instructions for downloading my own raw data.  A week later, after doing some research on my own, I ordered the report from the site.  I did this fully aware that this was not a reliable way to diagnose health issues.  But even if I didn't know that, it would have become very obvious that not every gene I had, had a say in my body's functioning:

1) For instance, I supposedly have a high risk of Alzheimer's.  A total shock, since there is NO record of it in my family history.  However, there are several genes involved in getting Alzheimer's, and while I have a few that increase my risk, I also have several other genes that decrease my risk - and they outnumber the ones that increase my risk 2 to 1.

2) Of all the diabetic risks I have genetically, the one that appears the most likely for me to have, never happened.  I never experienced gestational diabetes.  Nor did I have hypertension.  I did have very, very low blood pressure during both of my pregnancies.  Based on some other genetic results and the physical manifestation of them, I think another condition may have flared up during my pregnancies.

3) I supposedly have more genes protecting me from psoriasis, than making me susceptible for it.  I have physical proof on my body right this moment that the risk factors for it won over the protective ones.

On the other hand, there were many results that were so spot on that it was spooky.  I had to remind myself several time, "Of course, it is, Mandy. This is what determines that you have this trait."

1) I've been told that I have an Asian tint to my very fair skin.  As I stated earlier, my genealogical DNA results doesn't show this, yet my cross-referenced results shows my skin color to be a mix of European fair skin and Asian coloring.

2) I can definitely digest milk.  And low fat diets don't make me lose weight at all, which was part of the reason I lost faith in most diets.

3) I do have smaller than normal mosquito bites.

4) I need larger doses of several medicines before they are effective, but I need only half the amount of caffeine.  This is partly why I dislike going to a doctor for medicines.  I'm often better off not having some medicines, than only have them partially work.

I don't know who said it originally, but there is a saying that goes: "Genetics loads the gun, environment pulls the trigger."  By the same token, environment can jam the gun too.  At least that's what I assumed happened to a gene that usually makes people a little taller than average.  At 5'4", I'm literally the shortest person in my family of origin.  But I also was a very hard infant to feed.  My mother's stepmother finally got me on 2% milk somewhere between 6 and 9 months, and I stopped being colicky and started putting on some weight. Of course, I found that there are other genes involved in height, but it was not specified as to how they were in the report I currently have.  I'm sure more detail will be available as more research is done.

I also found out that my raw data had some holes in it.  I discovered this when I was investigating the genes involved in personality (which is a blog post in itself).  While my genes matched four of my Big Five personality results, the genotypes for the extroversion genes are missing.  I may re-do the test in a few years to see if I can get better results.

As for the gluten intolerance, it turns out I do have a few risk factors for Celiac's disease, some protective factors, and several that don't have enough data to make a clear conclusion with. But as I said, I have other solid proof of my gluten intolerance.  I may share a few of my other DNA discoveries in later blog posts.


*Found this through the Promethease report.

It has nothing to do with self-control.

After my mother's death, my sister Serena, a diagnostic bio-chemist, laid out her argument for why she felt my health issues may stem from problems with gluten.  I was resistant.  After all, I don't do fad diets and I have been eating stuff with gluten in it my whole life.  Okay, so I did show a symptom or two of Coeliac disease in my late 20s, but they went away after a day or two, and only reappeared on a yearly basis for a few years. And then there was that time when I tried to follow the old food pyramid for a week.  After two days, I literally had to crawl out of bed into the kitchen, because I was so weak and fatigued. I only ate protein and milk products that day to recover.

But gluten is a wonderful thing. It's filling. It makes food fluffy and tasty, and not crumbly. It's in a lot of cheap and easy to make food.  And most of all, it's practically ubiquitous. Not only is it in wheat, but it's also in barley, rye, and more food additives than you can shake a stick at.

However, when my sister actually offered to pay to have me tested for gluten sensitivity bio-markers, I realized how serious she was and how concerned she was.  I didn't start a gluten-free diet right away, but I started to be more aware of how much wheat I did eat.  Or more exactly, how much I preferred proteins over carbohydrates.  I was also coming to terms with the fact that for the past few years, I've been rapidly becoming weaker and more fatigued, to the point that I was afraid I wouldn't be able to care for myself in a few more years.

This last September, I spent several days with my sister, eating almost totally gluten-free during that time.  After a few days, I realized that I wasn't feeling as bloated and my brain was actually feeling a tad bit clearer.  I guess my body felt more improved in other ways too, because when I made the decision to eliminate gluten from my diet, it was surprisingly easy to turn down some of my favorite foods - KFC original recipe, M&Ms (dextrin comes from wheat), Coca Cola (caramel coloring), and malt-flavored stuff.  It was practically creepy. I did think ahead. I knew that if I was going to succeed at this, I had to find some easy foods to make because I knew I would have days when I wouldn't have the energy to fix meals from scratch. I found some good apps to use when I go shopping and out to eat. But hasn't been all smooth sailing. Like I said, wheat and gluten stuff is all over the place, and it's not cheap finding gluten-free foods.  But I've been slowly feeling life coming back to me. I'm not losing weight to my knowledge, but I'm gaining energy.

I've also had to be careful with my activity. I have a bad habit of over-doing it when I start feeling better.  Internally I go, "OMG! I'M HUMAN AGAIN! I'M GOING TO RECLAIM MY ENVIRONMENT AND BE ADEQUATE!"  Underneath this is the fear: "I need to get everything done while I still have the energy to do it!"  I usually end up not being able to move for three days.  During my vacation this month, I managed to pace myself until the second to last day, when I overdid it to finish my projects. And, yes, I paid for it. In my pained state, I ate some food with modified food starch because I was craving sugar - and I had to leave work because I became sick from it.

Still, it's awkward following a gluten-free diet, even when you don't inadvertently sabotage yourself.  Group meals are full of apologies on both sides.  I apologize for not tasting the wonderful dishes someone brings, and the other people apologizing for the lack of gluten-free food.  I usually bring some extra stuff for just me.  People keep asking me if I'm still doing it.  When I answer 'yes', they say things about how amazing my self-control is.  But the thing they don't understand is - it's not a matter of self-control.

Occasionally, I feel guilty and eat something with flour in it.  Now, even if you don't have a gluten intolerance, your body will have some problems eating gluten again, which is why your average person shouldn't really do a gluten-free diet.  I imagine that it's like when you eat beans only a few times a year:

I say "I imagine" it's like re-introducing beans to your diet, because the few times in the last two months that I have given in or accidentally eaten something with gluten in it, my experience has been drastically different:

When I eat gluten, at first, I only get a sour feeling in my stomach.  I feel groggy and a bit grumpy.  But the real fireworks start hours later, when the gluten reaches my intestines. Waking up in the middle of the night, feeling extremely nauseated and constipated, only to realize I have explosive diarrhea.  This lasts for several hours, as my body violently tries to expel the offending substance from it. Between the cramps, bloating, and migraine, time seems to move half as fast as normal.  During the worse attack, I woke up at 4 am and it wasn't until noon before I could leave the bathroom.

Like I said, it's not self-control; it's aversion conditioning at its finest.

And that's why I'm writing this blog post - to remind myself why I need to avoid gluten, when that sweet, well-meaning friend wants me to try their awesome homemade dish.  As much as I love my friends, it's not going to help anyone if I put myself through that torture.

As for the rest of you, diet however you like. While I would love to warn you against going on diets that are not specific for your metabolism, I have to admit that I would have even a harder time finding gluten-free prepared foods if it weren't for you.  You have no idea how torn I am over the fact that I actually have to follow a "fad" diet because of medical reasons.  But there you have it.  I may not have Coeliac's disease or even a wheat allergy (no histamine response), but I am gluten intolerant.  But at least now, I have hopes of becoming an energetic human being again.