http://www.celiac.com/gluten-free/index.php?autocom=blog Community Blog List Syndication Thu, 19 Nov 2009 20:52:56 -0800 info@celiac.com (Celiac Disease and Gluten-Free Forum (Home)) IP.Blog 60 I have been aggresively trying to figure out what has been wrong with me for the past 18 months. I am 40 years old and have dealt with loose stools, fatigue and all over joint pain for 7 years. The results I have received so far are: vitamin d deficiency, vitamin b12 deficiency, esophagitis, chronic gastritis, duodenitis, delayed small bowel transit time, negative blood tests for celiac, postive gene tests for celiac, and the biopsies that were performed were negative BUT they were only taken from the 2nd portion of the duodenum and not the duodenal bulb where the inflammtion was noted. I have now been told by my 3rd gastroenterologist that he would like to do another upper endoscopy so that he can carefully inspect every inch and make sure he takes sufficient biopsies in ALL locations. My question is can you have negative blood tests, negative original biopsies with positive gene tests along with active symptoms and celiac be the problem? Going gluten free is a huge endeavor and I feel that I need to be completely sure before I go this route. I would really appreciate any input to this post. This whole process has been quite exhausting and frustrating. Sat, 14 Nov 2009 11:05:23 -0800 Gluten?!

Could it really be? I've long since written it off. Especially as I see the previous commonly-missed condition become all the rage now: GI problems = gluten problem. Yet such a rare condition, all be it an extreme one, unlike traditional allergies/intolerances.

It's caught me off guard in my latest attempt to solve the mess.
Once again willing to do whatever it takes for a new kind of life--and more desperate than ever to figure it out.
And once again left confused, lost, even with the most thorough possible techniques to find what I can eat, to establish a baseline and oh-so-carefully build to find "my menu" -types and amounts-that address any food issues or how I eat as works with whatever condition may be going on.
As I find a more safe baseline than ever-the individualized elimination starting with a diet consistenting solely of a couple absolutely safe foods, my baseline offers initial hope. Massive flareup improving within 24 hours, maintaining somewhat stable.
And yet it stops there. Normal function does not follow, giving me grounds to test.
As I tire of the diet without the results, I loosen up on my careful testing plan...

Once again adding to the confusion is an initial "help" from adding more food. Obvious perhaps, except that it's in foods I thought I knew were problamatic. massive amounts of veggies? Even milk?
What a mess: from my "happy foods" being anti-normal-problem foods [coffee? Lactaid? chick peas?] to the mixed messages about what can help/hurt. And no means of being absolutely safe to try standard testing!

With the relief and help from the massive veggies, no real difference with soy or lactose, the laxity continues. Try a new approach...pick up trends. Just maybe, if I've noticed key problems in the past, I can sort through some basics with more careful logging, as I meanwhile establish consistent and adequate intake.
I keep tally's on questionable foods, hoping to pick up trends: is it fructose? IBS related? certain problem foods?

And then something odd happens. My steady days continue to improve. Even when I mess up the basics-don't get adequate intake, drink 2 pots of coffee.
While the symptoms don't evaporate entirely, I find myself feeling more and more free of the constant GI agony. I brace myself to pay the price when I think I'm eating my worst, to find I can handle things like never before.

I've even purposefully start eating lactose and soy again, even though I've tied them directly to problems in the past, because more research has lead me to believe that these problems are a symptom of the root problem, not an intolerance to the foods themselves.
And oddly enough, for the most part they don't effect me. I have some of my best moments of GI peace following straight up milk and/or soy nuts.
Even with my favorite but most problamatic fruit--the apple.

The only thing I keep completely free of is gluten:
I want to resist the urge to just say "nevermind" and dive into all the breads and cereals I gravitate towards because I'm tired of wondering, and I know this one needs time.
I know that it's a matter of my intestines heaing if gluten is the issue, and if it IS at the core of all this, I need to finally find out.
It's been brought up far to much, since repeatedly, for years now, people I've consulted who know abotu GI matter have brought it up. Said my symptoms really describe a gluten intolerance vs. X, Y, Z [whatever condition I'm exploring at the time].
From the first time I confided in a professor about my frustration with GI matters hijaking my genuine attempts to eat big, bulk up during my undergraduate education--to this past year, as I continue to repeat the process of "anything and everything, maximal nourishment" only to wind up with a new low physically and a mess of a life, not free at all.

Now, eating perhaps half as much, I find myself with the kind of results I had always gone for with the "big eating" quests. Not only can I digest better than ever before, but I feel like I had no idea I could! The energy, the strength, the physical healing.
I feel like all the areas of my life that have been hijaxed due to malnourishment have made a dramatic turnaround, the kind I could only dream of...except it's catching me by surprise because I feel like I'm a good 1000 calories away from the kind of intake I need for that!

It really does seem to be coming down to the message I've gotten over and over: I have to be able to digest in order to get anything out of the best nourishment possible.
-just as enjoyment of "whatever I feel like" couldn't matter less when it creates the life chained to the bathroom, surviving in coping mode.

Deep down, I knew that.
But I really, really didn't think it was gluten that was the core of it all...
I was in awe today, at the nonstop energy at my workout, at feeling so great physically and appetite despite a [for me] low calorie, limited options, diet.
And how my digestion continued to improve as I continued to lose the motivation to apply myself to any sort of makeup guidelines for what I ate.
And then I realized I was on day 12 gluten free...
...followed by another freaky realization: the one day in the last few weeks I had a true flareup was not after a veggie binge or overdoing coffee or drinking milk.
It followed my eating an accidental flour ingredient in homemade soup--something I didn't realize unti long after the flareup had set in [couldn't have mentally triggered it].

To think I was just wondering what the point was of holding off gluten anymore, while everything else was "down the drain."
And I have to reconsider my idea that gluten is most likely not the issue...

Could it be? the core of it all:
-why mixed messages other good/bad, why elimination helps but adding helps
[b/c CAN digest fruit/veg...and those can help...once digestive system working
problem foods when system destroyed by gluten]
-why anti-yeast [also gluten free] helped, why easy cereal harder than veggie omelette
-why I continue to improve to a point of at least "normal digestion problems", to a point where, even if other problem foods are involved, I can identify them in an overall better functioning digestion.
*And though I have a ways to go before i'd truly consider my GI system "working"--if it can be this different, and on the improvement, after 12 days gluten free while eating more and more helter skelter with everything else: could this really be the "time to heal" so often referred to? And if so...what will it be like after twice this long? A month? The time really required to heal?
Not to mention that if this trend continues I'll be much more rigorous about all the little things--my toothpaste, cross contamination in a shared kitchen, etc.


Most interesting is the physical change-so unexpected, so backwards:
How I've been feeling better and better physically [healing, strength, endurance, energy]-and gaining weight-despite eating less and working out more last week or so.
absorping = my key to nourishing and results from that I've always wanted!?
As opposed to the escalating GI disaster and crappy coping mode I feel in when I'm just fixated on "maximally nourishing."
When I can digest....wow.

I won't truly believe unless and until it continues like this.
But the way it caught me off guard from every end: the change in digestion and physical results just when I thought it'd all be getting worse--right when the one thing I've done is continue gluten free, meanwhile losing other variables to consider--I just have to wonder.

yes, it opens a ray of new hope.
And just a little bit of terror--what? I might have to live gluten free?
BUT--it'd be worth it if it got me a new kind of life!
]]> Thu, 12 Nov 2009 19:00:00 -0800 So, today I am exactly 4 weeks gluten free. Had some accidental glutten poisoning last weekend which resulted in another breakout of hives and no sleep that lasted almost one week. I have only been half-heartedly toying with the dairy free experiment up until 3 days ago. I would occasionally add a dollop or two of yogurt to a smoothie or put a little cream in my coffee which resulted in minor gas and scant bloating. But I decided to completely forgoe the dairy products for a few days just to see if there were any improvements to be had. And guess what? I have had this wonderful strange sense of calm. I slept good for the last 2 nights and my muscles are relaxed and not tense. This nasty shoulder, neck, and back tension has lifted considerably. I am almost giddy with anticipation over what the future might be like if this healing continues.

The physical part of this disease sucks, to be sure. But the most significant effect on me is neurological. The nerve problems and insomnia have been unbearable.

I found myself actually thanking God for this gluten problem (along with the other intolerances). This is something that I can control. Up until now, I felt like my health was completely out of control and my downward spiraling health problems seemed unstoppable. This can make anyone depressed. But the mytery has finally been exposed. I am thankful that this lifelong problem has a name and I am not dying of some mysterious, unspeakable disease. I can finally move forward in life and be confident that I can engage in anything I want. I have been held back too long.

All this being said, I hope I haven't spoken prematurely about being "healed". I still have a long ways to go and can only pray for my sleep to improve. It's a long way up from the very bottom.

Thomas ]]> Fri, 06 Nov 2009 13:51:56 -0800 Sun, 01 Nov 2009 18:42:09 -0800 Sun, 01 Nov 2009 17:44:00 -0800

Mexican - corn tortillas, yellow corn taco shells (Ortega are marked gluten free on the box), ground sirloin and some spices - good to go! The whole family will eat these! Some corn chips, salsa and you've even got a great snack!

Pasta - the gluten free pasta is pretty expensive but I have found it is pretty easy to just make it for the whole family.... I've tried a number of gluten free pastas - I like DeBole the best with a Classico pasta sauce. I make a gluten free bread - my favorite is Pamela's bread mix for a breadmaker - turns out great! Perfect meal for everyone!

Salad - I know this can be a bit boring but I do make salad a lot for my family with fruit as an added side dish. I jazz up my salads by using a couple varieties of cheese, pecans or walnuts, green olives, sunflower seeds, etc. That keeps them better than the basic "boring salad" which means I don't mind eating them several tims a week. There are some great salad dressings out there as well!

There are a few others that I turn to but these are the ones that I've been using the most. When I do cook a meal that we all are sharing - I put my food on a separate colored plate! I keep a set of plates that are different from the rest. That keeps my kids from touching my plate and reminds me to keep my food separate just in case there are any gluten filled foods on the table that the rest of the family is eating.]]> Thu, 29 Oct 2009 10:38:00 -0700 I had not been feeling well for quite a few months which is what started me down this path - more on that in a future post....

Little did I really know how much my life was going to change! None of my immediate family has Celiac Disease so I didn't know much at all. I began to read books, online articles and everything I could get my hands on... I cried when I was diagnosed but did feel relief that I finally did know what was wrong. Since then, I have bounced between relief and despair - it as only been 5 months and it feels like much longer than that... I have developed a list of staples that I've added to my kitchen and will share that in a future blog. All in all, I think I've handled this well although there are still some days when I have to talk myself out of eating food with gluten; my husband and children eat some meals that are gluten free but I do frequently have 2 different meals on the table - one for me and one for them. More on that in the future as well - some tricks that I have gotten down pat to make it a bit easier....]]> Wed, 28 Oct 2009 09:31:00 -0700
I became famous as the resident insomniac and even more famous for the after-affects of eating pizza and drinking beer (or ANYthing else for that matter). The gas and bloating was more than a mere discomfort and I became more and more miserable over the years trying to hide and tame the symptoms of what I now know is a gluten intolerance . Looking back on it all, I am amazed that I didn't figure out the connection to wheat much earlier. Some foods had an almost instant impact on my system and hit me like a sledgehammer. Other things were more sinister and didn't hit me until a day later or so, making the gluten connection more elusive.

I went through weeks and months at a time of severe intestinal distress. MRIs and various barium associated tests revealed nothing. Nor did neurological evaluations to explain unending muscle twitches, vertigo, confusion, and many other strange and frightening symptoms. Periodic skin eruptions with unimaginable itching was passed of as hives due to stress, and my continuous joint and muscle aches and pains were met with indifference by doctors. I actually bought into the assertion that I was depressed and needed an anti-depressant medication to help me function normally. It wasn't until I began anti-depressants that I truly understood what it meant to be morbidly depressed. This was clearly not the answer for me.

I became desperate to seek balance in my life and spent hundreds of hours doing research to get to the bottom of my health crisis. I tried heavy vitamin and mineral supplementation. I became a vegetarian and lost 30 pounds that I didn't have to lose (and scared the sh!t out of my family and doctor in the process), all-the-while consuming gluten containing grains. Nothing had ANY meaningful impact on my horrendous sleeping pattern and physical ailments. Interestingly, the only thing that gave me a ray of hope was delving into meditation and pursuing spiritual endeavors (though admittedly, the results were inconclusive if not short lived).

Part of the reason this whole gluten connection was so hard to determine was because my symptoms were not typical for celiac disease. I never had the chronic D that I hear most people describe. My problem is that I have numerous food sensitivities and it never was "just one thing", such as gluten. I am still in the process of elimination, but I have sensitivies (allergies?) to dairy and certain fruits and vegetables.

I am still in the process of figuring this all out. I am just relieved to know that there is a real reason why I have been feeling like I do and it's not all "in my head"

Thomas]]> Wed, 28 Oct 2009 07:21:20 -0700 Fri, 23 Oct 2009 09:43:43 -0700 Unfortunately, I also laid my hands on some Andean Dream Quinoa Cookies-yuck...aside from $ down the drain, they're a waste of calories in the sweets allowance, so I spit it out. Also sampled St. Amour Brownie Madelines. Ugh. Fruit aftertaste. ew.
As for the rest of October, I'm mostly about resting up and planning for Oct. 31 and November. Excited to pass out candy in my new neighborhood in my house with the dead grass that adds good ambience.
I have my pinup girl costume. Excited about the 40's hair and makeup. No date- I let the IrishProgrammer thing fade out and I'm currently enraptured with Major M. He's military and serving in The Republic of Georgia now, so I get nightly phone calls and emails. He has had the hardest time of anyone figuring out the gluten-free modifications! He kept drinking beer or gin or gobbling pizza during our dates and thought I was being demure about not kissing him afterward. I was seriously ready to maul him! (One day, after he'd obtained the clearance for entry to my batcave) I said, Do not eat or drink anything b4 u get here! And I kissed him as soon as he came over.
As it would happen, I took him to Macaroni Grille one Tues. and had the same meal I've had b4 of spinach and scallops, and felt some pains and popped some Immodium in the restaurant...got home and I was s-i-c-k! I don't think he noticed. Then I was sitting on his lap and he told me that he had to go to the Rep. of Ga for a month and that he wouldn't have cared before, but now that he met me, he doesn't like that he has to go Tuesday... I said I was aware that these things happen in his career field and that I considered it a business trip, just like any guy in a suit and tie. Well, he told me that was the best reaction he has ever gotten when telling a woman about having to leave.
Well, I'm just logical (more of a thinker than a feeler, really)-he's not in harm's way. He's just teaching and stuff. But, now, I'm feeling weird since he's not here to go places with me and I feel bad telling him about my plans (friends from various states flying to Vegas for my bday), etc. while he's locked down on some campus in some place over near Turkey and Russia. But he really seems to be enjoying his work there and all the architecture, food, and culture.
Anyway, here's how my GLuten/brain fog whipped some drama into the situation: As he continued talking that night, my stomach was audibly groaning and inflating and I was trying to keep focused, while figuring a way to cut the night short, since I needed some private porecelain time. So, I reiterated that I didn't feel well. I asked if he could hear my stomach and he said yes. He went home.
So, the next morning, I had the WORST brain fog ever. I was driving to work thinking, he said something about leaving, and something about he likes me and what was that other thing? And I remember he said "Woman!" and what was that about.... I told him later that my memory was all blacked out.
FF a few days...Saturday we were hanging out and he asked if I was taking him to the airport. And I said I work Tuesday, but what time? And he said not Tues., TODAY at 4:00. I told him he was joking. No, he said he had to be there Tues. and it takes 2 days to fly there. So, I said -No!- he hadn't told me. And we figured that he DID tell me -on that gluten night, when I'd pretty much blacked out. Go gluten.


menu today:
B: pomegranate raspberry Lucerne yogurt and jasmine tea
L: Ian's gluten-free chicken nuggets w/bbq sauce and a side of fresh (on sale) raspberries
Snack: Organic EnviroKids gluten-free rice krispy bar- chocolate (they're fair flavor-wise, ok texture)
Dinner: Tamale and taco with steamed carrots and black olives whole
Dessert: S'more and strawberry ice cream]]> Thu, 22 Oct 2009 19:21:00 -0700