Should YOU be gluten free?

OK everyone....time to talk a bit more about autoimmune diseases in general and celiac disease in particular. Of course, I've posted on this topic before, but now that I've been (almost) diagnosed with lupus, I've been thinking hard about all of my health issues and how they intertwine....and also about this gluten-free journey I've been on since last November.

So now I want to have a chat with you.

Of course, because of the lupus thing, I've been very discouraged and depressed for several days now, but I'm starting to pull out of it. Hey, I suppose things could be a lot worse, right?

One thing that's been really bothering me is that I thought the gluten-free diet would help me more quickly with all of my autoimmune diseases and associated problems like fibromyalgia. And now I have a NEW diagnosis (well, almost). So what's up with that???

But I have to face reality and realize that, if I do have lupus, I've almost certainly had it for quite a while, and just now noticed it during a flare-up. Systemic Lupus Erythematosus (SLE) has a lot of symptoms that overlap with many of my other medical conditions, including celiac disease and fibromyalgia. It usually takes people years to be diagnosed; it's not reasonable for me to think that I just woke up with lupus two weeks ago out of the blue.

So, now let's talk about how in the world I got to this place....how did I develop SO FRIGGIN' MANY AUTOIMMUNE DISEASES?? Just in case you don't know, I have Hashimoto's thyroiditis (autoimmune thyroid disease), psoriasis (autoimmune skin disease), rheumatoid arthritis, celiac disease, autoimmune hepatitis plus asthma and fibromyalgia. Asthma and fibro aren't technically considered to be autoimmune but they are certainly closely associated with autoimmune diseases.

BTW, I thought I might have Sjogren's Syndrome too (another autoimmune disease) but apparently not! Which is good news!! :)

And now I may (probably do) have SLE.

Celiac disease is almost certainly to blame for all of these.

Why do I say that?

As I've mentioned before, researchers have discovered that during active celiac disease, an overabundance of a cytokine called zonulin is released. Cytokines are in a category of "signaling molecules" that are used to help communicate and coordinate activities between cells.

Zonulin regulates the permeability of the intestine, which means that when the levels of zonulin are too high, as in celiac disease, it literally causes the intestine to "leak". (Ewww!!)

Foreign substances such as gluten and other allergens can get from the intestines into the bloodstream during periods of excess zonulin, and this apparently can cause the immune system to go into high gear and even become confused as it begins to attack the foreign invaders. Eventually it's so confused it starts to attack vital organs instead, and *boom*, you have an autoimmune disease!

Well, so I have another diagnosis. I'm still committed to the gluten free diet, now more than ever!

I truly believe that if I had known I had celiac disease 30 years ago, and had been on the gluten free diet ever since, I would not have developed most of my current autoimmune diseases. But I wasn't diagnosed with celiac until I was 52! :(

(30 years ago I was told I had IBS.....yeah, right!)

Some researchers believe that even if you've begun to have organ-specific auto-antibodies circulating in your bloodstream (for example, my daughter Robin has the Hashimoto's anti-thyroid antibodies although her thyroid is not yet damaged), if you go gluten free you may reduce or eliminate those auto-antibodies.

So I'm posting this in the hope that I might make a difference to someone else somewhere in the world....if you or any members of your family suffer from an autoimmune disease and/or any of the diseases and disorders listed below (particularly if you have more than a couple of these!), you should seriously consider going gluten free too!

A List of Diseases/Disorders Probably Associated With Celiac Disease:

* Addison's Disease
* Alopecia
* Anxiety and Depression
* Ataxia
* Attention Deficit Disorder/ADHD
* Autism
* Autoimmune hepatitis/Chronic Active Hepatitis
* Bird Fancier's Lung
* White-Matter Lesions of the Brain
* Cerebellar atrophy
* Chronic Fatigue Syndrome
* Crohns Disease
* Congenital Heart Disease
* Cystic Fibrosis
* Dental-enamel hypoplasia
* Dyspepsia
* Epilepsy (with or without cerebral calcification)
* Farmer's Lung
* Fibromyalgia
* Fibrosing Alveolitis
* Follicular Keratosis
* Gall Bladder Disease
* Gastroparesis
* Head Aches (Migraine)
* IBD - Irritable bowel Disease
* Impotency
* Infertility
* Inflammatory Bowel Disease
* Lung Cavities
* Multiple sclerosis
* Myasthenia Gravis
* Pancreatic Disorders/Exocrine Pancreatic Insufficiency
* Peripheral neuropathy
* Polymyositis
* Polyneuropathy
* Primary biliary cirrhosis
* Pulmonary Hemosiderosis
* Recurrent Pericarditis
* Sarcoidosis
* Schizophrenia/Mental Problems
* Scleroderma
* Short Stature, Delayed Puberty
* Small-intestinal Adenocarcinomas
* Spontaneous Abortion and Fetal Growth Retardation
* Systemic Lupus Erythematosus
* Thrombocytosis (Hyposplenism)
* Thrombocytopenic Purpura (ITP)
* Thyrotoxicosis
* Vasculitis
* Vitamin K Deficiency

A List of Diseases/Disorders Definitely Associated With Celiac Disease:

* Abdominal Distention
* Abdominal Pain, Steatorrhea
* Anemia - Folate-Deficiency/Iron Deficiency/Pernicious
* Arthralgia or Arthropathy
* Arthritis - Rheumatoid
* Carcinoma of the Oropharynx, Esophagus, and Small bowel
* Collagenous Sprue
* Dermatitis Herpetiformis
* Diabetes (Type 1)
* Diarrhea
* Down Syndrome
* Enteropathy-Associated T-cell Lymphoma
* Failure to Thrive (children)
* Hypertransaminasemia
* IBS - irritable bowel syndrome
* IgA Deficiency
* IgA Nephropathy
* Kidney Disease
* Liver Disease
* Microscopic colitis/Collagenous Colitis
* Nerve Disease
* osteomalacia, osteoporosis and osteopenia
* Recurrent Aphthous Stomatitis, Recurrent
* Refractory Sprue
* Sjogrens Syndrome
* Thyroid Disease (autoimmune)
* Ulcerative Jejunoileitis

Note: these lists came from this website.

True confessions.....

Well, no menu plan for this week. Sorry about that, but I have been under the weather lately.

I share my health info here because it's pertinent to the topic of this blog....the reason I'm gluten free is not just because of my celiac disease, but also in the hope that ALL of my autoimmune diseases and associated disorders will improve or go into remission. According to many of the forum members at celiac.com, this is definitely possible.

But I'm a bit discouraged at the moment.

My rheumatologist did some blood work recently which showed a high level of anti-double-stranded DNA antibodies. He told me that it was one of the indicators for lupus, but that he didn't think I had lupus. Which was good news, of course!

However, a few nights ago I showed up with a blazing red malar rash (the so-called "butterfly" rash):


I emailed a picture of it to my doctor, who said to come see him as soon as possible. He's doing more bloodwork on me, but in the meantime has started me on Plaquenil, which was originally an anti-malarial medication, but is now frequently prescribed for lupus.

How can I be developing lupus now?? It really blows my mind that my immune system can be going haywire like that when I'm on so much Imuran and prednisone!! Those meds are supposed to suppress the immune system!

Plus I'm on the gluten free diet, and that's supposed to help, too.....?

Well, speaking of the diet, I've been so exhausted and feeling so bad lately it's been difficult to cook. My husband has made a few dinners of Trader Joe's gluten free mini tacos, and we've eaten a lot of Garlic Jim's gluten free pizza.

I actually only made about half the dinners last week that I planned to. In fact, today I'm making the Crockpot Orange Chicken....I'll post a bit later on how it comes out!

More soon....

Gluten Free Menu Plan - Week of September 14th

I'm late again..... :(

Better late than never, though!

Monday: Crockpot Obama Family Chili, green salad

Tuesday: Crockpot Orange Chicken, rice, steamed broccoli

Wednesday: Easy Fish Tacos, green salad

Thursday: Elana's Savory Vegetable Quiche

Friday: Beef Enchiladas with Homemade Gluten Free Sauce, green salad

Saturday: leftovers

Sunday: Garlic Jim's Gluten Free Pizza!

Gluten Free Menu Plan - Week of September 7th

I've been gone for a while due to vacation and then recovery from vacation....but now I'm back! :)

Sorry this is a bit late....yesterday was a holiday here in the USA, so I made baby back ribs in the Crockpot. Yum!!

Monday: Crockpot Baby Back Ribs with Homemade GF BBQ Sauce (version 2), garlic mashed potatoes, green salad

Tuesday: Tuna Casserole, green salad

Wednesday: Crockpot Brown Sugar Chicken, rice, steamed broccoli

Thursday: Polenta Lasagna, gluten free Italian bread, green salad

Friday: Juicy Lucy Cheeseburgers on Liz's GF Microwave Buns, Oven Fries, carrot and celery sticks

Saturday: leftovers

Sunday: Gluten Free Pizza (Pepperoni, ham, sausage, red and green bell peppers, mushrooms, carmelized onions, and LOTS of cheese!), green salad

Staying Gluten Free While Traveling

Traveling, staying at hotels, eating out, and staying gluten free while doing it...shall we say it requires a bit of planning ahead?

You betcha!! At least it does if you're both paranoid and a super-sensitive celiac! :)

This is my topic today because I just went on vacation with my family for the first time since going gluten free.....wow. We returned about a week ago from a trip to Oregon to visit my mom, who celebrated her 83rd birthday on September 1st:


That's a gluten free cake in front of my mother, by the way, made with the new Betty Crocker Gluten Free Yellow Cake mix (two boxes, actually, because each box only makes one layer).

My mom's been a knockout all her life....and has hardly changed since age 16! :)

Happy Birthday, Mom!!

Aside from how cute my mom was at 16, and still is at 83, the really astonishing thing is that none of us were glutened during our vacation!! I'm SO glad I did take time to plan, and call restaurants, and talk to managers...well, let me tell you the whole story from the beginning.

Before we started our trip, I sat in front of my laptop for hours, tracing and re-tracing our probable routes and looking for safe places for four gluten-intolerant people to eat. I also purchased the complete set of Triumph Dining Cards, which has information for cooks, chefs, waitresses, etc., printed in multiple languages for many many different types of restaurants from American cuisine to Greek to Mexican to French....well, you get the idea.

On the way up, we planned to see my adult son Stephen, wife Ashley, and adorable son Cian, who will be two years old in January. They live about half way up to Oregon from my house, on the loooooooooong drive north from Southern California. I hadn't seen them in quite a while, so we just had to stop briefly and visit with them.

We decided to stop overnight in Modesto, which is about two hours from Stephen's house (they live far back in the Sierra Foothills in Calaveras County), and meet them in the morning for brunch. I found an Outback Steakhouse there in town, which of course has a gluten free dinner menu, but no obvious place to eat breakfast. In desperation I called a Denny's and found that they do actually have a pamphlet for people with allergies to help plan meals. The manager was very nice over the phone and assured me that they could work with us.

The breakfast worked out well; when we arrived I asked to speak to the Denny's manager (a different one on duty than I spoke to on the phone). She confirmed that they would do their best to accommodate and I handed her the Triumph Dining Card for American cuisine, so that the kitchen staff could read it. She started to brush it aside, saying that most of them only spoke Spanish, but I turned it over and showed her that it was in Spanish on the back.

We all ate well and had a very nice visit with my son and his family! I'll post some pics of them a bit later....still waiting for Stephen to send them! I stupidly didn't bring a camera with me to the restaurant, but they did.

The next day we continued our drive up to Oregon...


Mt. Shasta and the surrounding area is my favorite part of the trip up the 5!



As you know, I had decided our best bet was to simply rent a house for a week so we could have a full kitchen. I knew that it would be too nerve-racking to be eating out three meals a day just waiting to be glutened....not to mention expensive! As mentioned in the previous post, we were able to rent a 3-bedroom, 2-bath house the dates we wanted....it was great! Here I have to give a shout out to Tina Hughes and her beautiful home in Grants Pass. Thanks again, Tina!!

And yes, we really did bring along a couple of our own pots and pans, our toaster, and one of my Crockpots, as well as cooking utensils, etc. Even though the house came with such things already in the kitchen, we were very concerned about hidden gluten in cutting boards or pans. Also, since there are no Trader Joe's or Whole Foods Markets in Southern Oregon, we had to bring some non-perishable foods such as Pamela's Baking Mix for pancakes, and of course the Betty Crocker Gluten Free Cake Mix for my mom's cake.

In addition, we packed a couple of coolers with: two loaves of Pamela's Amazing Wheat Free bread (made in my beautiful new Zojirushi bread machine), 2 dozen gluten free banana-blueberry muffins, plus sandwiches, drinks, and gluten free snacks. I even packed bags of spices so I could make the kid's favorite chili up there in the Crockpot.

The sandwiches and blueberry muffins really helped during the drive!

OK, I know that the idea of vacation doesn't really mesh with cooking. But (as mentioned in previous post) I planned meals that wouldn't take much time, and would make lots of leftovers for lunches, etc. We did eat out a few times, mostly at McGrath's, and once had ice cream at Dairy Queen in Brookings, which is on the Oregon coast. Dairy Queen has a gluten free menu, too!

The road home posed potential problems too. Once again I was on the Internet and the phone before we left to make sure we could find places to eat (we came back a different way than we went up, down the 101). Why did we do that, you ask? Because of redwoods, rivers, and the gorgeous coast:






Well, we also ended up finding a WONDERFUL gluten free pizza at Mary's Pizza Shack in Petaluma, CA. We bought two of the pizzas on our way to the Sheraton there, and still had enough for lunch the next day.

The Sheraton in Petaluma was another incredible gluten-free experience! We stopped there for one night. The next morning was Sunday, and we wanted to eat a safe breakfast in the on-site restaurant, Tolay. I spoke to the manager and showed him a Triumph Dining Card.

He promptly asked if he could photocopy it...he said this would be helpful for his staff in the future!

Next he showed me where the restaurant wheelchair ramp was (I'm in a wheelchair) and promised to tell the hostess all about us.

By the time we were seated, both the hostess and our waitress had told us that they had read the gluten info from the Dining Card. Our waitress was AMAZING! I explained that our eggs etc. should be cooked on a part of the grill not used for wheat products such as French toast and she said she would tell the chef to use a clean pan for everything. She also told us that she washed her hands before touching our plates!!!

I just cannot praise them highly enough....needless to say we did not get sick! :)

The last half of the homeward journey was relatively uneventful, since we had plenty of food to sustain us without risking any more restaurants. We enjoyed the drive through San Francisco but it was foggy, of course!


The only thing of note is that on the date of our return (8/30/09), the Station Fire in Southern CA had burned within a few hundred yards of the Jet Propulsion Laboratory, which is closely tied to the California Institute of Technology and the project I work for, and was also threatening hundreds if not thousands of homes.

This is a picture of a pyrocumulus cloud, caused by the intense firestorm:


Here is the fire itself; you can see the hot spots glowing in the dusk....


The good news is, that as of this date, the fire is now burning in a wilderness area away from homes and is over 67% contained. And JPL survived!

And of course, we made it home safe and sound and un-glutened.