I have to admit to being overwhelmed with the response to the article on Gluten Sensitivity and Bladder Disease.  Thanks to everyone who wrote in, here and to me personally.  The article has been picked up not only by Celiac sites, but by sites that support people who have Intersititial Cystitis, and that honestly thrills me, because it doubles the number of people who have the potential to get better by going gluten-free.  Today I met a naturopath who said she had just seen the first published study suggesting a link between these two diseases.  I will track it down and post the link in this blog, for others to see.  A local MD here in Portland has agreed to help me with the support group and clinical trial for treating bladder pain with a gluten-free diet, and officially track the results.  This is all very gratifying for me, to finally see some progress after so many years. 

I'll keep you posted...

Wendy

The day I heard those four words, my life changed forever. No, they were not “will you marry me?”, yet I fondly remember that. They weren’t, “you're having a baby”, although that was the happiest moment of my life. The day I heard those four words, was the day that I realized life is full of ironies, and not in an Alanis Morissette kind of way. It was the day that a simple statement nearly put me into immediate carbohydrate withdrawal. Those four words were, “You have Celiac Disease.”

Seriously, I thought. “Are you absolutely certain?” I asked. Which I promptly followed with, “But how?”
Although I was reeling with outward shock to the physician, I was not really surprise by the outcome, based on the fact that I had asked for the blood test. No, I had practically begged for it- even exaggerating symptoms of severe gastrointestinal upset that should never be mentioned in a public place.

The doctor smiled and said, “Well you have tested positive for Celiac Disease, so you need to not eat gluten for the rest of your life.”
For the rest of my life. I thought. “Okay, so gluten is wheat, right?”
“Yes, and barley and rye. Here, let me print out some information for you on resources you can find on the Internet. There are some support groups and a list of what foods you should stay away from.”
For the rest of my life. “So this is not something I will just get over one day?”
“No. Once you have the disease, you will always have it.”

After leaving the doctor’s office, I sat in my car and began to make a list of all of the foods that I would no longer be allowed to eat. Ironically enough, this was two days before Thanksgiving and I was so not thankful that I would never be able to eat my Mom’s stuffing again. As the list of forbidden foods grew longer, I began to think back of the signs I had over the years- little things I may have miss that would have told me that maybe all of my favorite foods were literally poisoning me.

Stomach aches- Is it abnormal to go to bed several nights a week with a stomach ache? I’d had them for so many years that they became normal and expected.

Tooth Discoloration- Why is it that I had staining on my teeth as a child (thank goodness for modern day bleaching) that no dentist could find a reason for other than “they just appeared” or “maybe you hit yourself really hard in the mouth once.”

Canker Sores/Mouth Ulcers- More severe during times of stress, college finals and my husband’s deployment to Iraq, they would oftentimes become the size of a pencil eraser head. Ironically, they usually deterred me from eating gluten because they hurt worse when I did. I saw a pamphlet at the dentist’s office once that said mouth sores could be due to a wheat allergy. I shrugged and thought, That is definitely not me.

Recurrent Miscarriages- too painful to go into detail, but a potential link.

Anemia, chronic fatigue, weakened immune system- all symptoms that I suffered for years and mistook for something else. I had every excuse in the book for my problems, and chose to ignore what was obviously right in front of me.

Yet, I was beginning to think that maybe there was a link between my health ailments and Celiac Disease. Still attempting to forgo a lifelong abstinence from gluten, I scheduled a consult with a Gastroenterologist, knowing that if I was going to be passing on the pizza at my kids' soccer parties, there had better be a good reason for it. I should mention that I did give up gluten immediately after leaving the doctor’s office on that November day. For dinner that night, I ate yogurt.

The Gastroenterologist, who is one of the nicest doctors I have ever had the pleasure of working with, ordered an upper endoscopy, to biopsy my stomach and small intestine. He also told me that in order for the test to be accurate I would need to have consumed gluten for at least two weeks prior.
“So I get to eat gluten again?” Like I said, he was a great doctor, and he was telling me exactly what I wanted to hear.
For the next two weeks, I took my husband and children to every restaurant that I loved. I ate spaghetti, pizza, hamburgers, sweet and sour chicken, donuts, cake, cookies, sandwiches, consuming basically everything that was on the “forbidden” list of foods. It was glorious, and I will always remember my fourteen days of blissful gluten gluttony.

Of course I developed a respiratory infection, lost my voice for a week, and felt terrible the entire two weeks, but at least I was well fed. So- when the nice doctor told me that my biopsy did prove I had Celiac Disease, I did not argue with him, or cry, or storm out of the office in despair. I picked myself up out of the chair and realized that it was time to make a change.

Looking back at all of my years with undiagnosed Celiac Disease, I think of all of the ironies that were present in my life. There were the meals when my track coach said to carb-load before the big race and I would do just that. Chucking the impending stomach aches off as nerves, I could never understand why I felt so sluggish and sick on race day. There were the Monday mornings in college that I would come down with a cold after a weekend of fast food and pitchers of beer at the local off-campus bar with my friends. There were the afternoons when I could not keep my eyes open after eating a “healthy” whole wheat sandwich for lunch.

I also look back upon my jobs in high school and college- working in a fast food restaurant, serving donuts and slicing bread in a bakery, and as a waitress in an Italian restaurant. It is too ironic- yeah, I really do think.

It's been a while since I had the energy or time to sit down and focus on writing or blogging, but I'm back. I also find it interesting, from a physiological perspective, that after being gluten poisoned two months ago to the day and being so inundated with sickness, pain and trying hard to feel better, along with doing more Celiac research and being so focused on my stomach, that I seemed to have needed a little break from "all things gluten free." I think that sometimes living with a chronic illness makes us much more empathetic to others needs, but in this particular instance caused me to become a bit more introverted and anti-social, just trying to salvage any and all extra energy I had, in order to "get back to normal" (whatever that means!) and back into the land of the living.

I wanted to express my sincere gratitude to so many of you who posted comments both on this site and my blog, leaving behind words of encouragement, support and many, many useful tips/products that I was scribbling down and running to the health food store to find.  I am truly grateful for knowing that you are all out there...somewhere, and filled with great empathy for others. I am also taken a back by the stories of great struggle I have received from many Celiacs and undiagnosed folks, as well. It's so hard to believe that in this day and age, Celiac Disease can still wreak such havoc with so many and can go undiagnosed for so many years, leading to major health issues that go above and beyond the small intestine's villi.

I encourage any and all of you out there who are struggling with stomach issues of any kind, to impress upon your doctors the great importance of being tested for Celiac Disease...and if they appear to be non-responsive with a glazed look in their eyes, PUSH the issue. We must be advocates of our own bodies and health.  Educate the doctors, if need be, but don't let your issues be dismissed. Given the vast number of unknowing Celiacs just waiting for a diagnosis, I pray we will reach a point in the very near future when this disease will receive the necessary attention it's so deserving of.  

In the meantime, here's to all of you terrific and AWARE Celiacs out there, sharing your helpful bits of information and support, while educating all those who cross your path.

Here's to all of you!

Hey! I’m not “allergic” to wheat, barley, or rye;
but I know that living without them takes a knack.
The term “allergy” doesn’t really apply
when my immune system begins its attack.
I can get sensitive to other foods—so sly
are my body’s defenses when they’re out of whack!
I am, or have celiac (Greek for abdomen)—
no allergy but an autoimmune disease,
such that I cannot eat a type of gluten.
So on my order, hold what’s macro-processed, please!
Or better yet, I’ll bring my meal from the kitchen,
my haven from the restaurants—those minefields—
amid the big-box grocery stores, my oasis.
The power of that on which I dine wields
an early grave or healthy homeostasis!
Shall I continue down an awful rut
of cancer, leaky gut, and osteoporosis?
Or shall I eat with respect for my upper gut?

No, I don’t want to risk gastrointestinal pains
or the effects of further malnutrition
upon ingesting gluten from those three grains!
I’ll miss Mom’s cooking, but I’m firm in this position.
For, when such gluten—which is called gliadin,
protein complexes in wheat, barley, and rye—
has passed the stomach into the small intestine,
my immune system reacts in ways that defy
the understanding of modern medicine:
destroying the digestive folds, called villi,
with endomysial antibodies.
And this destruction, the body’s self-attack,
is different from all wheat allergies,
or enteropathy, or sacroiliac.

Now, as for starches, I can eat rice, wild rice, corn,
buckwheat, sorghum, mesquite,
teff, arrowroot, and tapioca; but neither einkorn,
malt, (sprouted) barley, rye, nor wheat.
I can eat quinoa, millet, montina,
flax, and amaranth; but neither spelt, orzo,
durhum, udon, couscous, matzo, kamut, farina,
seitan, emmer, semolina, nor farro.
And, I may or may not be able to eat oats;
if I am, they must not be cross contaminated
by nearby wheat, whence gliadin floats.
My oats must be carefully sourced and crated.

Attacks can also happen on the other systems
of my body—that’s quite unlike most allergies!
And, Celiac has over 200 symptoms;
someday I will collect as many recipes.
I may be any age and either male or female.
When diagnosed, I was a child—if by the textbook!
I may be very plump or as thin as a rail;
in either case, I don’t wish to attract the next look.
Or I may appear just like any other person,
and even be unaware that I have this disease
until its symptoms have already worsened—
its complications brought me to my knees!
Or I may not even have a single symptom,
except a slight anemia, perhaps.

Americans have shown a lack of wisdom:
Three million undiagnosed cases—walking death-traps!
In the United States, it takes eleven
years to rule out or diagnose this malady.
But this determination is made by age seven,
had you been born and raised in Italy.
I know that for most folks, the term “gliadin”
is neither on their minds nor their vocabulary.
It doesn’t pose as great a danger as bin Laden,
controlled by a well-funded constabulary.
Americans—three million of them—face a threat
unknown to almost all of them—that’s scary—
until they’ve had the screening they should get.

Get screened if you have chronic diarrhea
or other symptoms showing malabsorption;
if for lack of iron, you have anemia;
if you have got abdominal distention;
or if you’ve lost weight by the classic formula—
though weight gain’s a possibility with distinction!
Get screened if your stature’s on the shorter side;
if for you, puberty was or is delayed;
if a woman who’s given babies shortened rides,
and if your efforts to conceive are unrepaid.
Get screened if you have persistent cold sores;
if you have irritable bowel syndrome;
if even passing by wheat agriculture
excites your respiratory symptoms;
if, in your relationship with your body,
the autoimmune system does all the talking;
if you sense pin-pricks in your extremities;
if you have trouble keeping balance while walking;
and if enamel’s missing from your teeth.
A screening may show that Celiac was mocking
another ailment, while present underneath.

Gliadins, as any gluten, are gummy
and may be stretched or otherwise compressed.
Gliadins, after passing through my tummy,
rob me of my ability to digest.
Those barley, wheat, and rye crumbs make me feel just crummy.
Gliadins make the wheat-dough pliable
and able to contain the air injected into it—
almost as elastic and viable
as I’ve become adopting a gluten-free diet!
Yeah, so much “gluten” talk is deniable,
injecting me, too, with hot air—but I don’t buy it!
My body’s fickle needs are modifiable;
so if a food is clearly gluten-free, I’ll try it.

While gluten has neither odor nor color,
in processed foods it is ubiquitous, eclectic.
Along the edge of cold cuts, it’s a filler
of the mold—just so it looks symmetric!
It’s added in proportions just to texturize;
that foods once had wrong textures would not surprise me!
And in a liquid food, it’s used to stabilize—
perhaps that’s so, but gluten doesn’t stabilize me!
The additive is fine when micronized as wheat dust,
but not so fine by me when it is used by
most food makers, in whom I don’t place complete trust.
(A grumpy celiac, you’d rather not be accused by!)
I’m watching every label and each calorie—
avoiding gluten as I make my own sweet crust.
I’m tending to my dietary needs as carefully
as anyone who likes or needs to eat must.
But I am challenged to watch what I cannot see!

So no immune reaction’s set in motion
by going off my diet, I’ve had to learn the ropes.
I want to shop safely for my toothpaste and lotion,
and I cannot lick stamps or envelopes.
Wheat dust—since it has an airy, elastic feel—
prevents the oils in dried herbs and spices from clumping.
A substitute is xanthan gum with flaxseed meal
or eggs whenever I am baking something.
And, gluten’s also used to thicken many sauces
and condiments—tell that to other people
who fail to understand what all the fuss is!
(Sit back and watch them dig themselves into a deep hole.)
While to the senses it’s hardly detectable,
the additive is popular. What’s stranger is
it doesn’t make food more or less delectable
except to me—to whom gliadins are dangerous,
yes, even in the tiniest amount!
It’s also added to food for the change there is
on the label showing you the protein count.
Please share how versatile an additive it is
with someone who doesn’t understand
a gluten-free diet can pose a challenge,
and that I’m safer buying food of certain brands;
and keeping all my nutrients in balance.

While others went out to eat, I sat home by the stove.
In January, I’d longed for crust and crumb.
So I went shopping for Bob’s Red Mill and Maple Grove
and invested in a bag of xanthan gum.
A teaspoon of the gum, of Rumford baking soda;
corn and potato starches, one half cup of each;
and just a quarter cup of corn meal—I showed a
knack in both gluten-free action and speech.
In February, I made my first flour mix
of rice and tapioca—three parts each;
and one part corn starch; and I’ve learned some tricks,
but baking pastry’s still beyond my reach!
I once looked in the mirror, and my tongue was crimson:
For iron, I eat beans, clams, or a peach.
Everyday, I eat a few nuts or seeds with raisins;
and every week, one or two servings of spinach.

If packaged, boxed, or canned, it’s processed food;
whatever brand, that it be gluten-free is urgent!
Al Fresco’s sweet Italian sausage suits my mood;
polenta, San Gennaro or Food Merchant.
Or I’ll eat franks by Shelton’s, Trader Joe’s,
H. N., Whole Ranch, Wellshire, or Cantella’s;
boil one; warm the corn or rice tortilla that I chose;
and wrap it up with minced onion and red-leaf lettuce.
Unless a vegiac, I eat fresh meat; for I’ve become
a carnivore who trusts the butcher’s hand
for meat that’s processed at a minimum,
that’s labeled, or that has a gluten-free brand.
For meat, water, and salt, I’ll buy Tyson chicken.
Pacific, Shelton’s, Trader Joe’s, or Wolfgang Puck’s—
beware of other meat broths gluten’s used to thicken,
regardless if they’re premium or deluxe!

My strength’s returned as I have gotten nourished;
I’m vigilant for vitamins and minerals.
I’m gluten-free, my protein sources have flourished,
and so I’m feeling well in general.
My dietician cares that this transition succeeds;
and monitors my nutritional uptake,
ensuring that my diet meets my body’s needs.
Meanwhile, I’ve made my first gluten-free cupcake,
and I am getting out more nowadays.
But for millenia, the Natives cultivated Quinoa;
today I also eat grains like Montina
that just amazes me; and have seen wha-
t the Quinoa Corporation makes in Gardena.
Imbibing Native lore in Nu-World Amaranth
I feel so grateful for Manna from Anna;
attuned to Nature’s Highlights and to Nature’s Path;
and have been caught eating cookies by Nana’s.

Perhaps tonight in my kitchen, I will fix
a dish of Tinkyada or Trader Joe’s brown-rice penne.
Vermicelli, maifun, and Thai sticks—
like all rice pasta—are cooked al dente.
Some days, I have a salad at Subway—
a place where I can be safe from gluten attacks.On other days, I check in with Chick-Fil-A
where it’s also possible to eat and relax.
At In-N-Out, I’ll order up a hamburger
in protein style (wrapped in lettuce instead),
raw onion, and French fries; I then watch that the servers
do not touch or tangle my order with their bread.
Or for a big night out, I go to P. F. Chang’s
and order off the gluten-free menu,
Chinese food in which I can safely sink my fangs
to please my palate, stomach, and my every sinew!
I won’t be able to go out again—or will I?
I will if I may go to Outback Steakhouse
because I know I’ll spare my precious villi.
The baked potato at Wendy’s, I douse
with a cup of Wendy’s old-fashioned chili—
last time I checked on line, it’s free of gluten!
Whoever’s heard of my disease won’t think it silly
that with my salad, I can’t eat a single crouton.

The mental fog dispelled, my thoughts are clearer;
I plan my travels with help from Bob and Ruth.
I get up every morning, look in the mirror,
and see the gleaming white enamel on each tooth!
Together, we can struggle, learn, and grow,
grow healthy, grasping the Enteric Truth.
To celiacs in whom I see someone I know,
I give encouragement at meetings of our chapter.
I’ll swoop down to the nearest El Pollo Loco
for plain, roasted chicken and, like a raptor,
devour it with veggies and plain pinto beans.
Whatever nutrients my body’s searching after,
I can derive some comfort from my new routines.

I eat red palm oil and produce that’s yellow
or orange to get my vitamin A—
lest night blindness make me injure some other fellow!
As an adult, I need 900 micrograms per day.
I eat brown rice or some whole grains, potatoes,
nuts, meats, or legumes for 1.2 milligrams
per day of thiamine, lest I feel pins and needles
on my feet; for I like the way I am!
On my lips and mouth, I don’t like fissures or scales,
which are signs of unhealthy mucous membranes.
Therefore, everyday, I eat enriched cereal
for my 1.5 micrograms of riboflavin.
I eat whole grains, legumes, or fish
for 2 milligrams of B-6 per day, lest my nerves or skin
sustain disorders or anemia I don’t wish.
For 2 micrograms of B-12, cobalamin,
I eat meats, eggs, or milk, or take a supplement
so that my red blood cells fully develop—
lest I should go into a steep descent,
the red blood cells within my body swell up
(and if a woman, lose my shapely curves),
my hands and feet tingle, little acid in my stomach,
look pale, feel weak, and suffer damaged nerves!
Alongside B-12, folate makes red blood cells.
Therefore, everyday I eat raw, leafy veggies
and fresh fruits, hoping to absorb the folate well.
My folate’s in fresh fruit, especially strawberries.
A vegiac may take a B-12 supplement.
I also eat dark leafies for A, C, K-1,
and E—alpha-tocopherol, an antioxidant
ensuring that the battle for my health is won!

And, lest my bones grow thin, I eat potatoes, cabbage,
and citrus fruit for 60 milligrams of C;
one gram of calcium in beans, fruits, and kale (roughage);
sweet almonds and sunlight for 10 micrograms of D;
legumes and nuts for 0.9 grams of phosphorus;
greens, nuts, grains, and legumes, 2 milligrams of copper.
Except for vegiacs, seafood is good for us;
as are nuts with magnesium—0.3 grams is proper.
And, seafood—if I choose to eat it—will supply
my 2 milligrams of B-6, pyridoxine;
fifteen of zinc, lest I should lack digestive enzymes;
to stabilize my thyroid’s energy, some iodine
(150 micrograms). Magnesium’s
responsible for healthy nerve function
and bone formation with minerals and calcium—
macro- and micro-nutrients wrought in conjunction!

The food I eat is only as hard to find as my genes,
but seldom does my food come with big names or cans.
My vermicelli’s made of either rice or mung beans;
my waffles, Lifestream, Trader Joe’s or Van’s.
My macaroni’s made of corn, rice, sorghum or quinoa.
And my tortillas?—They are made of corn or rice. I read the ingredients for gluten incognita
in maltodextrin, flavoring, or spice.
My carbonated soft drinks are translucent—
365 or Hansen’s makes as big a splash!
It’s not as dreadful as is getting glutened;
while traveling, I carry GF food in stash.
Becoming gluten-free was like full-time employment;
some people cared, while others could be brash.
My life’s progressed, but it’s not all enjoyment.
This shopping gluten-free leaves me short on cash,
so that I can’t afford the Dapsone ointment
that I could use to treat my DH rash.

In the long course of human evolution,
I am a victim of the Agriculture Clash.
My atavistic gut and I got glutened—
those food preparers’ sloppy, careless tricks!
I’ll head back to the haven, my own kitchen;
and learn how to make another flour mix.
Did my genes know about my upper gut since birth?
Am I an evolutionary oddity?
A loving God might have put me on the Earth,
but I still have to care for my own body.
If I had some other disease that people had heard about—
and one they’d not dismiss as a wheat allergy—
they wouldn’t hear my cry of anguish as a pout
because I have to choose food that is gluten-free;
nor think I overeat if I am stout,
or am bulimic if my build is slighter.
Each individual has unique views,
but every celiac has felt like an outsider,
and wondered—reading lists for clues—
if “vinegar” was pure-distilled or apple cider!

Those other people could begin to listen
to my concerns about related diseases
with whose symptoms my body seems to threaten
in such mysterious ways as it pleases.
If other people—non-celiacs—would care more,
I wouldn’t wonder if I’m being selfish.
(Perhaps Enjoy Life cares too much; before I pour,
did anyone suspect a cereal had “shellfish”?¹)
If—God forbid—I were knocking on death’s door,
more people would remind me where the B-12 is;
and wouldn’t mistake my sense of confusion
for self-neglecting irresponsibility.
Nor would they overlook the obvious conclusion
that Celiac brings regular uncertainty,
as any cryptic, autoimmune disease.
Not just allergic to the Gliadin-laden Three,
I wish they’d formulate stronger hypotheses!
I’d also ask the U.S. government
for research, education, and lives to increase,
despite this epidemic’s one percent.
To nourish healthy lives instead of cancer is why
three million people should go gluten-free;
they’ll do so, hopefully before I’ve mastered my
technique of baking fruit-filled pastry!

—P.T.J.

1) According to the side panel of the carton of Enjoy Life’s Very Berry Crunch Granola (good with warm milk or water, btw), it's a breakfast cereal that contains neither wheat, dairy, peanuts, tree nuts, egg, soy, fish, nor shellfish. Who would have thought a breakfast cereal would have any shellfish in it? When in doubt, leave it out—now that's what I say!

Ingredients:
2 Large cans gluten-free artichoke hearts, drained 
8 baby carrots, sliced lengthwise
10 asparagus stalks previously steamed until bright green and tender crisp
1 medium tomato
½ yellow or red bell pepper
5 fresh basil leaves, chopped
4-6 oz. feta cheese
4 tablespoons fresh grated Romano (or Parmesan) cheese

Dressing:
2 tablespoons olive oil
1 tablespoon white wine or rice vinegar
1 tablespoon balsamic vinegar
2 cloves fresh pressed garlic
¾ teaspoon dry mustard
Fresh ground black pepper

Directions:
Chop the artichokes into medium bowl. Cut the asparagus into 1 inch pieces and add to the artichokes. Cut up other vegetables into medium pieces and add to mixture tossing carefully. Pour on dressing mixture and add Romano. Gently stir in Feta cheese just before serving.

Food, food, food. The one thing I realize since being diagnosed with celiac disease, is how much time was not spent on food before. I must spend half of my recent waking hours thinking about what to eat. I have told myself that I am trying too hard and that all I need to do is convert my pantry to gluten free and stay with fresh, whole foods. Easy right? This has however, not been the case. It seems that at least once a week I am mistakingly adding some ingredient  that I cannot eat. Tonight, Mexican night. Refried Pinto beans are in order. Simple right? Well, I had the great idea that I should boil them with ham. I open the freezer, eureka, ham bone! Not thinking I throw it in the pot with the beans...then it dawned on me...when did we have ham?? Oh no, it was not gluten-free,  It was given to us as a gift from a ham store. I called the store and sure enough they put wheat in their spice (but the ham is gluten-free). WHY?? I wish more chain stores would get on board and stop adding allergens to their foods. I hope we can all enjoy eating out some day without worry or if not, at least be able to cook at home without poisoning ourselves.

I accidentally consumed gluten almost three weeks ago and I'm still suffering with the serious consequences. It usually takes me a solid month, depending upon the amount consumed, to fully recover from being "gluten-poisoned"...so it's been a long and challenging few weeks, to say the least.

I am a super-diligent gluten-free eater and am constantly researching new products, stores, and restaurants that are safe, etc. - so to have been caught so off guard this time around, is really disappointing. Here's what happened and I hope my warning can help some of you avoid repeating my harmful mistake.

I was at the opening of the new Whole Foods in Reno, NV and was so caught up in the excitement of the Gluten-Free frozen baked goods department and all the rows of new gluten-free products, that I believe I let my guard down a bit. In my excitement, I headed to the "prepared foods" section instead of my usual salad bar trip, hoping to find something warm and tasty at the Taco Bar. I managed to order some plain, cubed chicken, sautéed veggies and a small scoop of their delicious mashed potatoes. I was just about to be in the clear when I went back and asked for a scoop of the guacamole. Though I first asked if their was gluten (and the answer was no), I just had this sneaking suspicion that something wasn't right...or should I say, was so wrong. That snippet of doubt should have been all I needed to convince me to "just say no" but I dismissed my intuition and ate it anyway.

Within two hours, the usual time it takes my body to recognize gluten, I knew that I was in trouble and at that moment, was pretty darn sure that the guacamole was to blame.

I was right.

So, needless to say I've been reeling since July 3rd...suffering from serious brain fog that lingers, exhaustion, being unable to consume much food at all, and one really messed up stomach...not to mention the depression that starts to creep in when I've been feeling this way for so many days. I'm sure that this is not news to any of you out there...I'm just commiserating with "my people!"

Seriously though, what I've learned after several conversations with the Whole Foods store manager and marketing people is that all of their designated "prepared foods" sections are now strictly off limits to Celiacs - which can also include the salad bar...so I was told to eat there at my own risk.  As cautious as I am, and normally so aware, this was a mistake that I've definitely learned from and will hopefully prevent others from repeating, but mostly has served as a wake up call to myself and a strong reminder that trusting your "gut"...ha ha...or intuition, when it comes to knowing what is safe or not, is so important and usually our best ally.

So, as much as I love Whole Foods and realize that many of you out there most-likely shop there for your gluten-free products, as well, just be doubly safe the next time you approach the salad bar or any other prepared foods area.

Be safe.

Be well.

This article humorously depicts a disastrous luncheon I attended. It brings home the message that living gluten-free can be challenging!

Today I went to a business women’s power lunch.  Now I am not a businesswoman and could give many examples of my failed attempts at staying-home-and-making-millions-while-I-do-the-laundry-and-change-diapers, but I had better not.  However, I attended the luncheon after a generous invitation from a successful acquaintance who thought I’d meet the right person to springboard my latest project.

There’s something I need to clarify before I continue.  Like most who probably visit the celiac.com website, I am completely gluten intolerant, which as you know, precludes me from eating any – and by any I mean not one speck – of gluten, the protein that is found in wheat, barley, rye, and consequently, all mainstream bread products.  It’s not too difficult to manage at home, but eating out is a challenge.  The trouble with ‘messing up’, is that I can spend up to three days in bed from a cascade of symptoms that are unstoppable once I have ingested the dreaded culprit.  Since three days in bed doesn’t exactly jive with mothering young children, I do everything in my power to keep my diet gluten-free.

Thus, I am apprehensive about the lunch on multiple levels.  I have been an at-home mom for so long I’m not sure I’ll remember business etiquette, I am feeling anxiety over whether I’ll be able to eat the food or not, and the sheer dilemma of arranging a babysitter on a school day for my home schooled girls is leaving me flustered.  To make matters worse, in the scramble to transfer kids and car seats into my babysitter’s Landrover, I have managed to arrive late to the luncheon.  People are already being seated and I find myself table-less and without a business name to place on my nametag for my latest project.

Finally, they open a new table and three other dangling women, a gentleman, and I are gratefully seated.  I look around for someone to chat with, but the man next to me is clattering away, shifting the place settings out of his way so he can have room to lay out all his business paraphernalia.  I finger my blank-business label name tag nervously when, out of the corner of my eye, I see the woman to the right of me tearing up her crusty baguette.  I turn my head and focus clearly, watching in horror as crumbs fly in all directions, some landing dangerously close to my water glass.

I think of the article I recently read on celiac.com, that fear of gluten contamination can be more harmful than actually ingesting a miniscule amount of gluten.  Reminding myself of this, I push away my worries and lift my glass to take a drink.  Right before my lips make contact, I look down to see not one, but two breadcrumbs floating near the top of my water.  I stop, my motion to drink frozen in place, glance around to make sure nobody is looking, and then very slowly set my water glass back down.  Being surrounded by high- powered executives, all strangers to me, I cannot summon the boldness to request a fresh glass of water.
 
I sit through the entire lunch and sip on the other drink placed on the table – an iced tea. Incidentally, sometimes certain brands of iced tea give me migraines, but I decide that purposefully ingesting floating breadcrumbs is more risky than taking a chance on the tea. 

The main speaker for the event is announced, and I attempt to focus on what is being said, only to realize that my neighbor is now ripping up another piece of bread.  This time, breadcrumbs land on my knife.  
My anxiety is reaching a new level.  I carefully retrieve the knife and attempt to inconspicuously clean it with my napkin.  This attempt is nullified, however, when the main course is placed before me—breaded fish.  I look down at my purse, open on the floor next to me, trying to will my stash of nuts that I left in the car back into my purse, which is where they should be for emergencies like this.  Just as well, though, because now my tablemate is cutting her breaded fish with such gusto that pieces of food are flying off the table and landing in my purse…

Two hours later, I leave the luncheon, faint with hunger and drive to a local Pollo Tropical.  (For those of you that don’t know, they serve beans and rice and I can eat their chicken “tropi-chop” fairly successfully).  Barely able, in my low-blood-sugar state, to count out the change correctly, I pay for my meal and drive off.  Only then do I realize that they never gave me a fork.  No problem, I careen down the interstate eating beans and rice with my fingers, having survived yet another day gluten-free in a gluten-filled world.  Small wonder I prefer to eat at home.  I promise myself that no matter what else I need to do in order to earn money on the side while I stay at home, I will not, for the rest of my days, attend another power luncheon without at least three gluten-free emergency snacks on hand.

I have not yet gotten an answer to the question " Are strawberries grown in wheat straw gluten free. I have asked my local Chapter of the Dept. of Agriculture to look into the question. However, I have found that the surface coating of gluten can be removed with Vege Wash that you can buy at your local grocer.

 I have been reading articles that say that people with celiac shouldn't consume strawberries due to the fact that they are grown in straw. I picked strawberries with my children yesterday and I asked the local grower what type of straw they used and sure enough it was wheat straw. I have eaten strawberries and had not had a reaction, but after knowing this, I didn't eat any of the ones that we picked. I intend to look into this situation and I will keep you posted as to what I find out.

The word is out my friends, and gluten-free is slowly but surely oozing its way into everyday conversations, literary articles, and food labels.

But beware! Not all labels are up-to-date. Why, just last night at a baseball game, I happened to glance at a bag of Doritos chips. I had even been told by the company a year ago that the item was gluten free. They looked delicious, but something in my gut (literally) told me to read the ingredient label over once more just to make sure everything was ok. And low and behold! Right there, WHEAT FLOUR. Ah! Well, I cannot say how fortunate I was to read the label. I gave myself a little pat on the back for my wise choice. But while I was disappointed that I could not eat Doritos again, I am pleased to note that I have found many other mainstream items that label themselves officially gluten-free.
Here are just some of what can be found in your local grocery store:

Yoplait 99% Fat Free Yogurt
French's mustard
Best Foods Mayonnaise
Babybel cheese
Rice Chex
...these were the only things I bought at the store the other day, but there are more items to come!

I'm a huge tennis fan and French Open groupie! I mean what can be better than hanging out in the City of Light and watching Rodger Federer dash around on the red clay?! So for the past couple of weeks I've been reading all about and watching as much of the tennis coverage from Paris as possible, and thinking back to the good old days when visiting Paris meant getting to partake in all the fabulous goodies from every Patisserie you passed and wolfing down croissants...ahhh I can still remember so vividly, ever bite of the last croissant I ate. It was September of 2000 and though I had already been diagnosed with Celiac Disease four months earlier, it was my last "hurrah," so to speak, with my favorite French pastry.

I remember the buttery, flakiness of each bite as my teeth sunk into the delicious and soft middle of the half-mooned-shaped delicacy. There are days, like today, when that memory conjures up not only the taste of heaven, but of all things Parisian...the city sounds, the Seine, sitting along the Ile de Cite...beauty and abundance, abound.

My point today, however, is intended to be more of a serious one...because I was very foolish looking back now, to have purposely eaten straight wheat/gluten months after my diagnosis...but this process of changing over an entire lifetime of eating habits and preferences takes time - a lot of time and a lot of convincing ourselves that we CAN do this. No one should ever kid you - it's tough!

I met a woman last week who is in her late 60's and was just diagnosed with Celiac a few months ago, along with her brother who is also in her age range. She was telling me how difficult this "new life" is and how she still regularly eats gluten, knowing it's just so impossible to completely rid from her diet and lifestyle...mind you she is also Basque and it's a hugely cultural thing to eat bread. A true Basco doesn't feel Basque when having to order a chorizo without the bread - let me tell you - it can mess with your psyche if you don't take the right approach and garner the right attitude. Okay, but back to the lovely woman I was speaking of. So we had this long chat about how she can't break free of still consuming bread or donuts, etc. I kindly and carefully tried to express to her that this behavior can be very damaging and most of all, dangerous to her health and continued quality of life. She nodded her head in agreement and then said, "well, I give it my best try each day but I won't ever completely give up all wheat - I just can't do it."

Though I definitely understand and empathize, I do NOT agree with this way of thinking. I have an Aunt who most likely also has Celiac, but refuses to get tested. She would rather live in misery than face the facts, get tested, and make the correct adjustments to give her some quality of life - I mean really at the end of the day, it's only a piece of bread or a store-bought cookie that we've gone without. Life is so much more than simply food and in this day and age, we as Celiacs have quite an abundance of choices out there to enjoy, and can find almost everything a wheat-eater can consume. There are a plethora of websites now, blogs, on-line shopping and new gluten-free products arriving in stores weekly - (check out my list of sites on the right side of this blog). It is my firm belief that every diagnosed Celiac needs the utmost support from their circle of family and friends and advocates on their side, so if you know a Celiac or you yourself are one, make an extra effort to reach out and teach these folks how to LIVE without the dreaded gluten that can ultimately wreak such havoc upon our health and our lives.

So as much as I cherish Paris and Europe, when I'm visiting I no longer partake in anything that could make me sick...and with the Euro as strong as it is, I'm certainly not going to throw my good money away to be sick in a hotel room because I HAD to have a croissant! We are blessed to be able to eat so many fantastic foods and are even the more healthier because of that fact.

I would still take a night out on the town, in the City of Light with Rodger Federer, but I would have to say, "no merci" when offered that croissant!

Eat safely.

Eat gluten free.

Eat well.

Live with Abundance ~ Bon au revoir.

Now...I've been intending to sit down every evening for the past two weeks and post a new entry, but the time slips away...warm evenings have caused me to linger a bit too long in my backyard, but it's been worth it. In addition to this blog, as I mentioned last month, I've become an author on Celiac.com's website which is really exciting, but finding the time between working full-time, having a social life and exercising, and researching Celiac news, and...well, you get the picture. I need like 8 more hours in each day, please!!

Receiving emails from newly diagnosed Celiacs has become the main source of the comments left for me to respond to. I'm amazed, though I shouldn't be, at the number of women...yes women vs. men who seem to have struggled for so many years and were ultimately diagnosed with this disease. The majority who have written to me range in age from the early 40's to late 60's. My heart truly goes out to these folks who have been struggling for so long with no answers...until now. Now, I hope they can find a way to celebrate, even through the confusion because it does get better, and better and better. Not to say they won't have days of feeling completely overwhelmed with what their "new life" will ask of them, but as I've always said and believed, KNOWING is so much better than not knowing. Knowing, means you can face something head-on, with all of your strength and energy and resolve or learn to manage with ABUNDANCE...whatever it may be.

I have emailed back and forth with a woman in southern California who was also recently diagnosed and really struggling with finding safe restaurants to eat at, and with the whole concept of eating out at restaurants period, which can be quite daunting, intimidating and scary. It honestly takes a long time to feel confident walking into a new restaurant you have never visited before and being assertive about what you can and cannot eat as a Celiac, and making sure the server and chef got the message loud and clear. This is especially true when eating out with larger groups of friends, family or colleagues - you must press the issue for your own safety, regardless of how uncomfortable you might feel. Being clear and upfront about what you cannot eat always beats the dread of two hours later knowing that you were poisoned and dealing with the inevitable 2-3 weeks of feeling "hung over"...at least that's how it is in my case!

So, this woman suggested that I begin talking about WHERE Celiacs can safely eat and which restaurants around our country not only are safe, but even promote their own gluten-free menus. I say Bravo! It's a great idea and one that will require much research on my part, but something I am excited and looking forward to doing - great suggestion, my Celiac friend. I have posted several gluten-free restaurants on my blog from my travels and have had great success at these lovely eating establishments; however, it's important to find more "main-stream" places to eat that allow for a safe and enjoyable dining experience...actually, we would all just take the safe part of that sentence!

As I research these new restaurants and begin to delve into this new realm of information, I will continuously post my findings both on this blog and on my Celiac.com blog, in order to better-reach those reading and searching for some advice and answers. I will begin though, by listing some chain restaurants found nationwide that have their own gluten-free menus. Even when ordering off of these menus, please, please, please remind your server that your food must be prepared in a safe environment without any cross-contamination.

Also, if any of you find other gluten-free restaurants PLEASE email me or submit a comment on one of my blogs so that we can add them to the ongoing list that's being created:

• PF Changs China Bistro
• Outback Steak House
• Chipotle
• Claim Jumper
• Baja Fresh - just make sure you are eating CORN tortillas
• Bristol Farms - they have a cafe in some locations
• Whole Foods Market - their salad and soup bars are largely gluten-free
  

Eat safely. Eat well. Eat with abundance.

More soon.

Q: So how do I get this podcast file on to my ipod or other mp3 player?

A: There are so many ways to do this.

First, if you're using a Windows computer, use the right-click (you can learn a lot about what's going on by highlighting things and right-clicking them) to "download link target" and let it download on to your desktop.

If you don't see "download link target" but you do see "save link as," that means that your browser just sees the link to the file and not the actual mp3.  You'll have to find another way to download the file.  See the links below for help.

Make sure the file downloads to your desktop. The file name should look like "celiac_dot_com_podcast_edition_001" or whatever the episode number is. Then, drag it right into your media player, iTunes, Windows Media Player, or whichever you use.

In any case, you'll probably be able to drag it right into your media player, and the episode title will show up in your list of things you can listen to. From there, once you plug in your hand held media player, you can upload it easily, the way you would any song that you listen to. Now you can take Celiac.com news and updates along with you! :)

If the above info doesn't help, then try subscribing through iTunes!

Just open up iTunes, click on "iTunes Store," find the "podcast"section, and search for Celiac.com Podcast Edition in the upper right-hand corner.

Here's a quote from the Apple site:
Q: "I'm trying to find a particular podcast in the iTunes Store, but the Search iTunes Store field in the window's upper-right corner and Power Search haven't helped. Any suggestions?

A: These search methods only look for music and audiobooks in the music store. To find podcasts, use the new search menu "Search all podcasts" on the iTunes Store podcast page."

...Thanks for all your great reviews.  Remember to let us know what you would like to hear in the program!

Anyway, keep listening and stay tuned.  We have some pleasant surprises in store for you!

Take Care,
Celiac.com Podcast Edition

Awareness of Celiac disease is spreading, by Joe, and restaurants are taking full advantage of the added patronage! Some stops that are required for the weary traveller, or simply the local resident, are listed below:

1. In N Out- Now, I know they have these guys all up and down the coast, but the one in Laguna Niguel is very aware of Celiacs' needs (I go there all the time, and they are more than willing to accomodate)!
2. Skosh Monahans. The owner's son has autism, and because of his condition, they created a gluten-free, casein free kid-friendly menu. The place is has a very laid back atmosphere and would cater to even the pickiest gluten-free consumers.
3. Newport Rib Steakhouse. They are very willing to help out Celiacs. Their food is delicious!
4. Z'Tejas- Tex/Mex lunch and dinner. Good food, good restaurant.
   

Also, BJ's Pizzeria, a favorite amongst high-schoolers for their low prices, big plates, and the infamous pazookie, is adding a gluten-free menu to their restaurant! They say that is will be coming soon, but how soon I am not sure. I will be checking frequently.

If anyone else has any other suggestions about some out-to-dinner locations that are sympathetic to the needs of Celiacs, do not hesitate to add them in!

So I was reading the Joy of Cooking today. Yeah, I'm a weird food freak like that. Anyway, There is a gluten free section that I had no idea about! It's in the 1997 edition. You can look up gluten free in the index. It's got a pie crust, pizza crust, and bread. Pretty cool stuff. I love the Joy of cooking so you can imagine how excited I was to find gluten-free recipes.

I became a Celiac "Blogger" at the beginning of this year. For months I had longed to take the time to put my words to paper or keyboard and write snippets about my life's journey as a Celiac and in doing so, offer up all kinds of fun food, product, and restaurant tips to others who are searching or just curious.

Being a Celiac has been such a tremendous journey of transformation, observation and consequently learning so much about myself.  I look my diagnosis now as a blessing - a gift, really.  I realize for those of you newly diagnosed Celiacs, a few who have written to me, you are definitely NOT sharing my same sentiments right now.  You will...in time.  There are so many emotions wrapped around the realization that gluten will do serious harm to you, both physically and mentally. Most non-Celiacs are baffled as to how this could be so complex. I am always patient to try and explain that suddenly being diagnosed with this auto-immune disease, especially in your adult years, is a tremendously difficult challenge to overcome...but we all do, with grace and humility AND a lot of help from our fellow Celiacs.

My advice to anyone reading this entry is...reach out for help! Do not be afraid to ask, inquire, research, study, learn and once again...ask for help. I'm more than willing to be added to your list of Celiac supporters. It takes strength and courage to live with this disease, but you will be amazed at the wonderfully insightful and caring humans you will encounter on your journey back to health and happiness.

Gluten-free abundance to each and every one of you.

This past weekend, I was taken to brunch by some family members. Aware of my gluten restrictions, they decided to take me to Draeger's in San Mateo, a wonderful market that not only sells produce, but also has numerous amounts of gluten-free items for purchase! A gigantic banner on the front of their store even proclaims that the store is a supporter of those who are gluten-free.

On the second level of the store, above the shoppers and tucked away in a little corner, is a magnificent restaurant that serves an unbelievable brunch. The staff is acutely aware of the need to be gluten-free, and I had no problem ordering a delicious omelette with a side of herb-roasted potatoes. What sounds like a decadent dish that may encounter cross contamination was absolutely gluten-free and just wonderful. I enjoyed my meal, and I was very comfortable that those who ran the establishment took care of my needs.

If you are ever in the area, Draeger's is not one to miss. Take a little time out of your weekend and visit their restaurant. It is well worth it!

For nine months I ate high protein, lots of fruit and veggies and saltine crackers.  With my beautiful baby girl born and my second, and last, nauseousness filled pregnancy over, I was on cloud nine!  My plan was to eat healthy so my baby girl would be as happy and healthy as my son was while I was breastfeeding.   After about three weeks we went out for lunch and I ordered I large plate of hummus, grilled veggies, crackers and French bread.  The next day my baby girl started throwing up.  I called my midwife and sister only to hear that maybe it was the hummus or the garlic, but it was probably nothing.  I cut out any legumes and garlic; the problems only increased.  Her stomach always seemed to hurt so she was classified as colic.  I am not one to sit back and be told there is nothing I could do.  I cut out dairy and saw minor improvements.  The crying on both our parts continued.  I cut back to only eating plain grilled chicken, saltine crackers and bread thinking there was no way these plain foods could hurt her stomach.   After seeing the problem get worse, and finding no help in books or the internet, I decided that wheat, my main food source at the time, may be a problem.  My mother doesn't eat wheat and I've always been told that I may be mildly allergic.  Within a week her attitude seemed to be improving and her potty habits became more regular.  When I tried to reintroduce oatmeal it was followed by two days of straight crying and about another week before she soiled herself again.  I was faced with no gluten or lactose and weighed in at maybe ninety pounds.  I loved to cook, and my family loved it too, so we started looking into what was out there.  We make  lactose and gluten-free pizza, pasta, bread and so much more.  My son, four, has not even noticed that we stopped buying gluten or dairy.  My baby girl also gets rashes from corn, is still a little fussy, but overall her stomachaches are gone and she is extremely healthy!    It has been a long and exhausting switch, but I feel very good about making a sacrifice that to me is so minor but to her makes the world of difference.  My baby girl is almost nine months old and is the happiest colicky baby anyone has ever seen.     

I've written in journals, on pieces of scratch paper, on torn-out magazine pages while sitting in airports, just about anywhere I can put pen to paper when the moment strikes and inspires me to move the ink across the page...I suppose I have much to say...not that anyone has to listen - writing and expression are like breathing for me - essentials.

I was diagnosed with Celiac Disease on April 15, 2000 - the Millennium year proved to be quite significant for my life, minus any YK2 computer crashes. My diagnosis arrived sincerely just in the nick of time, because at the ripe old age of 30 I was on my out of this life, due to almost a decade of severe sickness, complications and misdiagnosis. There are still many a day when a flash of my pre-diagnosis past enters my mind and I remember glimpses of my life during those years of confusion, sickness, despair, and ultimate frustration. I don't recall ever feeling fearful of what was happening to me though, because the funny thing about the human spirit is - we fight to live; it's innate to our souls...and of our being. However, I can honestly say that my parents and brother would not concur with my last sentence because they were laden with the fear and uncertainty of my future more than I - my job was to fight through, research, keep living, keep filling up my soul with whatever joys and enjoyment I could still physically and emotionally take in...and I did just that.

I was a very healthy little girl; active and athletic, loving food of all kinds and full of life. I was a serious equestrian rider and horses were my passion. One of my Basque grandfathers was a true cowboy and taught me the gift of riding at age four and I have four concussions under my belt to prove it…or wait, was it five? It’s hard to remember such things when you’ve hit your head so many times! I have such wonderful memories of riding for hours on end every summer afternoon through the golden hills of northern California. Those days shaped the way I have lived my life as an adult in so many ways and were simply so joyful and rich. It was during those years of riding, in my early teens, when I first began experiencing debilitating migraine headaches - the kind where you loose your vision and your cookies, so to speak. I remember that wearing a riding helmet in the heat was the diagnosis for the headaches that would shut me in my room for an entire day, until my sight returned. It would be 15 years later, after being diagnosed with Celiac Disease, that it became apparent the migraines were my first symptoms. Little did I know back then of the journey that ensued, leading me to a gluten free life of abundance.