Gluten Loves Me- CD Update

Well, you won't believe this.  I had the CD bloodwork panel redone last week, and it came back NEGATIVE this time!  WTF?  Granted it was at the high end of normal, but my GI said looking at these results in a vacuum, he would say I *don't* have Celiac Disease!  The problem is that he said my original test was bad.  Very high.  Very positive.  He says it doesn't make sense.  I reminded him that I hadn't been eating gluten for 2.5 months (although I did eat gluten the weekend before I got retested).  He thinks the test still should have been positive with only 2.5 months of being GF (I disagree based on what I've read on the CD forum site, which is why I ate gluten the weekend before getting retested).  However, he said that if it was long enough to clear me up, eating gluten just the weekend before the test wouldn't really make a difference.  Soooooo, I'm now doing the "gluten challenge" where you have to eat the equivalent of 2 slices of bread a day for 6 weeks, and then get tested again.  SIGN ME UP.  Here is the list of what I would like to eat please:

 *pancakes, cupcakes, sandwiches, girl scout cookies (the first year ever in my life I didn't eat GS cookies, and now it's too late!), a twix, battered and fried anything, white bread, pasta, pasta, pasta...ooh this is going to be fun!

Gluten Update- The Good, The Bad, The Ugly

The Good

• I'm reading Elisabeth Hasselbeck's book "G Free Diet", and I really like it.  I recommend it if you are going GF.  She has some good and very understandable things to say, such as: 
• "Celiac Disease is a digestive disorder characterized by a toxic reaction to gluten, the protein found in certain grains.  Celiac disease is hereditary, meaning it's in your gene pool; chronic, meaning it won't ever go away; and autoimmune, meaning it causes the body to attack itself."
• Carrying the gene for CD does not necessarily activate the condition, it often develops after you undergo some sort of physical or emotion "trauma" that activates the condition, such as surgery, childbirth, viral infection, physical injury or severe emotional distress.
• Gluten is an all-purpose stabilizer and thickener that manufacturers and restaurants add to tons and tons of different products, which is why it's hard to eat out or even eat processed foods because the ingredient lists are often so vague and confusing.
• The only thing I don't like about her book is that she talks about GF as almost a diet aid in one chapter, which it is certainly NOT.  Sure if you eat all natural, fresh ingredients and exercise portion control, you are going to be healthy/ lose weight whether or not you eat gluten.  On the flip side, if you eat a bunch of GF crap (Cheetos and Reeses PB Cups are GF!!!), you will still gain weight.
• As I mentioned before, eating at home is super easy (aside from cross-contamination), as tons of foods are naturally GF, and there are tons of substitutes for things that aren't.

The Bad

• Eating out is really hard.  You really can't trust restaurants or the people who work there.  Even if they say it's GF, they don't get that they can't cook it on the same grill as g-full items, they can't use the same spatula, etc. as they used on g-full items, etc. (Elisabeth makes it very clear in her book that you need to really be diligent about cross-contamination, which I haven't been).
• After having some girl's nights out where I literally sat there and drank water, which is uncomfortable and embarrassing, I decided to talk to the manager at El Torito Grill prior to our baby brunch for Julie.  The manager says, "oh we don't add gluten to anything".  Uh, really?  You don't add flour to your FLOUR tortillas?  You don't add any thickeners, fillers, etc. to any of your sauces or dressings?  I find that a bit hard to believe.  He clearly didn't know or understand what gluten was so I gave up.  I did eat that day (which I REALLY shouldn't have given the manager's lack of knowledge), and I tried to be really careful, but it made me uncomfortable, and I'm sure I glutened myself somehow.
• Because you can get seriously sick just from cross-contamination (see bullet below), I've already spent $100 buying kitchen items THAT I ALREADY OWN.  Now we have to have 2 sets of many items- 1 for GF foods, 1 for foods with gluten.  I'm not even close to getting everything I need, but I really don't have the space to store multiples of the same thing.

The Ugly

• I have only GAINED weight since being GF!  I thought I was going to lose weight by not eating gluten, but here are the two problems with that theory:  (1) When you have CD, you don't absorb nutrients so once you stop eating gluten and start absorbing your food, you can gain weight (ok, I don't think this was my problem, as I clearly had no problem gaining weight during infertility and pregnancy!); and (2) Because you feel like you are being deprived, you tend to buy EVERYTHING labeled as GF and eat unhealthy things you wouldn't have even eaten before you were diagnosed. For example, I found these delicious GF ginger cookies at Trader Joe's, which I can't stop eating...why am I buying cookies? I never bought cookies BEFORE I had CD. I also started eating more crackers and other snacky things that are labeled GF. I'm trying to control this now.
•  I've read over and over that you can (and mostly likely will) become more and more sensitive to lower levels of gluten the longer you are GF.  I am really starting to believe this and taking cross-contamination seriously.  While we were in SB, my undereyes puffed up like I'd been stung by a bee.  I don't know why, but we did eat out for every meal.  On top of that, I've been getting very sick for the past 2 weeks.  I will spare you the nasty details (but the bathroom & I have become very friendly), but it's gotten to the point where I am scared to eat.  At all.  I've had stomach and back pain (that goes from dull to excruciating at various times) 24 hours a day.  I don't know if this is related to CD or if I just have some sort of bacterial infection or something (I have a GI appointment tomorrow thank goodness), but I'm really thinking I might be getting continuously glutened via cross-contamination.

Celiac Update

The nurse finally called me back with my CD bloodwork panel results.  Unfortunately, she did not seem exceptionally knowledgeable on the subject, so I'm not exactly sure what it means.  She said that the pathology came back fine (meaning I don't have any parasites or anything???), but the "Celiac Sprue" came back positive.  So there it is.  I guess I do have CD. 

I did a little research today, and I found that fatigue and anemia are the two most common symptoms in people who don't get sick from it.  I am always fatigued and need lots of sleep, and I also always border on anemia, and in fact, i was VERY anemic when I was pregnant.

The other symptoms I have are:

(1) Infertility (duh);

(2) Hypotension (low blood pressure)- I had no idea this is related to CD, and it's pretty amazing because I've always had exceptionally low blood pressure, and when she took my bp before my colonoscopy, she said, "do you work out a lot?"...uh no..."oh because you have really low bp like that of someone who works out all the time".

(3) Dermatitis and skin lesions (again, duh).

A lot of people have asked me what CD is, what it means, what it does, etc. so I thought I'd post a little blurb from Wikipedia in case you are interested...

Celiac disease is an autoimmune disorder of the small intestine.  CD is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat, and similar proteins found in the crops of the tribe Triticeae (which includes other common grains such as barley and rye).  Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the reaction.  That leads to a truncating of the villi lining the small intestine (called villous atrophy).  This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption.  The only known effective treatment is a lifelong gluten free diet.  While the disease is caused by a reaction to wheat proteins, it is not the same as a wheat allergy.

Gluten Intolerance/ Gluten-Free Living/ Celiac Disease

*Warning* Just skip this post if you don't care about that stuff...otherwise it will be reeeeeally boring!

I still don't have my results from my bloodwork, but I'm still GF (shockingly!), and I've done a lot more research.  Here are a few things I've learned:

*95% (!!!) of celiacs are undiagnosed or misdiagnosed with other conditions;

*6-10 YEARS is the average time a person waits for a correct diagnosis!;

*Apparently, cross-contamination is a HUGE problem for people with CD or gluten intolerances- this is where I'm having a big issue.  To be *truly* GF, you need to not be exposed to gluten at all.  Meaning your food cannot be prepared on pots/pans/grills or with utensils that are also used to prepare gluten foods.  For example, if you get an In-n-Out burger animal style, it's GF, however, if they are grilling the burgers on the same grill that they heat up the buns, your animal style burger has now been contaminated with gluten!  It seems extreme, but for people who are very sensitive (i.e. have extreme reactions), they get VERY sick from something as minor as that.  Well, you say, you clearly don't get that sick from such cross-contamination since eating a piece of bread doesn't make you sick so who cares- no need to be so anal.  HOWEVER, just because you don't get violently ill, doesn't mean your insides are not suffering from a violent reaction, which of course can manifest itself in other symptoms, such as infertility (uh me?!) or skin disorders.  So therein lies my problem.  Gary refuses to eat GF, and frankly, I just don't think I'm ready to switch Ella over to a GF lifestyle, even though she does LOVE my GF garlic crisps!

*The other issue I learned after I bought a ton of stuff at Whole Foods and Trader Joe's is that basically, pre-packaged food, even if specifically listed as GF, still is at risk of cross-contamination, and most people who are super serious about this lifestyle don't eat much, if any, pre-packaged foods.  All fresh, all the time.  Now, of course the most ideal way to eat is all fresh foods anyway, but come on, who doesn't buy crackers, protein bars for a quick lunch, bottled sauces/dips/dressings, etc., etc., etc.?  The problem is that because the foods are (a) either made on equipment that also processes foods containing gluten (I'm no longer buying foods that have this disclaimer); or (b) are made in facilities that also make foods containing gluten.  I read story after story on the CD forum of people who had eating foods listed as GF on Trader Joe's GF list and then became very sick.  GRRRR.

Despite all this, it hasn't been difficult so far because Trader Joe's does have so many options!
*All but 2 types of their hummus is GF- I've been inhaling that.
*The chicken taquitos and black bean & cheese taquitos are delish.
*All of their guacamoles.
*The savory thin mini crackers in 'original' (rice crackers) are SO good.  However, these say they are made on equipment shared with wheat, so I won't be buying them anymore. :(
*The savory thin mini edamame crackers (but same problem).
*The TJ's rice noodle soup bowl (all flavors- my fav is the mushroom).
*TJ's garlic mashed potatoes.
*TJ's Tuscan Italian dressing (so good).

I also learned about many GF restaurant options:
*PF Changs and Pei Wei (we already tried PW- the spicy chicken and spicy shrimp were ok but too spicy, the Vietnamese rolls are really good).
*Chipotle- everything is GF except their tortillas and tomatillo salsa.
*In-n-Out- everything is GF (including fries!) except the buns, however, the special sauce is questionable.
*Wahoos- many GF options including the charbroiled chicken and fish, white rice, gauc, fresh salsa and black beans.
*Chicken Dijon (Greek food)- I haven't ever tried this place, but it looks good and was listed on a GF site as having lots of options- there is one right by us so I'm going to try it!
*La Sirena Grill- apparently many of their breakfast and lunch/dinner options are GF, and there's one by us so I'm going to try it!

It's Gluten Free For Me!

I've been eating gluten free for two days now...yesterday was rough because I didn't know what to eat, but today was great (and easy)!  I was diagnosed with an awful but very rare chronic skin condition about a month ago, that is believed to be an autoimmune disorder (like Celiac Disease).  Although there is very little research on it, there is some evidence that it may be linked to CD, and the *only* thing that seems to "cure" it (there really is no cure, it's chronic) from accounts I've read online is a GF diet.

I couldn't stop eating gluten prior to getting the CD panel of bloodwork done (it will produce a false negative if you do), which I finally did on Tuesday, so I started eating GF yesterday.  For those of you that know me well, you know I was fondly called, "the carbo kid" when I was young because of the way I inhale obscene amounts of bread and potatoes.  GF seemed quite impossible for me.

I went to Whole Foods, which unlike most people, I hate.  It's overwhelming to me and far too healthy for this fast food loving girl.  Honestly, nothing in there looks good to me.  Not to mention that it's so expensive- I spent $50 on half a bag of groceries!  Half a bag was pretty much all I could stomach.

However, I spent time doing tons of research online and then discovered the extremely large GF list on Trader Joe's website.  Oh how I heart you Trader Joe's.  They have oodles and oodles of GF items, and what I've tasted so far has been delicious!  I think the only thing I'll be going to Whole Foods for now is rice flour and GF baking mix.

The hardest part of eating GF for me will be eating out.  Especially since we eat out A LOT.  The only places I know that have extensive GF menus are PF Change and Pei Wei.  The problem with non-GF menus is (1) even things that sound or appear to be GF, often aren't at restaurants because they add random fillers and wheat based sauces, etc. to most of their foods, and (2) even things that are GF are often cross-contaminated by being cooked on the same equipment that non-GF foods are cooked on.  People with serious allergy reactions can't even put something to their lips that has touched a piece of bread or wear make-up that is not GF.

But nonetheless, I'm on a GF path.  I *must* get this skin condition under control because it affects my life, but hey, on a positive side note, I would LOVE LOVE LOVE to lose the infertility and baby weight that just won't go away!  I'll let you know how it works. ;)

We've definitely been eating much healthier.  Last night, I made salmon and quinoa with vegetables.  Tonight, I made dover sole with a cornmeal and rice flour 'breading' cooked in a bit of olive oil and real butter and a French vegetable dish I found at Trader Joe's.  I'm going to post some of the GF items I've found that I really like soon in case anyone wants to get on the GF train with me!!