penguin

I don't think that the bloodwork they've done has been very specific just yet. I've been tested for lyme disease and a few other things, and my normal bloodcounts all looked good (high hemoglobin, etc). I also don't have mono--I had a pretty nasty case of it in college, and reoccurance only seems to happen in 1-2% of the population, and this just doesn't feel like that. I've also been vaccinated for meningitis. I haven't been tested for Epstein Barr though.

Isn't the Epstein-Barr virus the virus that causes the infectious mono? Same virus, right? That would mean if you've had mono, you have the EBV, but that also if you have had mono, you shouldn't have to deal with EBV stuff again.

Good news--the MRI of my brain came back normal. Thank goodness! We still don't have answers, but without lesions on the brain, I'm not really concerned about MS anymore. I'm going in for an MRI of the cervical spine and an EMG of the right leg next week.

Lorka--I do stretches but mostly of the back and neck since my physical therapy was prescribed during the time when the neck and back pain was the most unpleasant symptom, but I've started to do some more leg stretches recently. I'll just have to learn which ones help the nerve pathways in the leg the most.

Phew! That's great!

Argh, Chelsea... I get that ALL the time, people asking me if I'm pregnant (I'm not). That has to be one of the worst insults. I just look them dead in the eye and say "nope, I just got fat." Then I give them a withering smile and walk away. Hopefully that keeps them from every embaressing anyone else like that. Ugh.

My sweet grandfather asked if I was pregnant on my wedding day

Thanks! I am reading up on going gluten free and looking forward to it. My husband thinks it is a great idea, and said he will be supportive. I was worried he might think it was a crazy whim, but he really respects the family doc for turning us on to the research. I have just lost 12 pounds on weight watchers and I asked if they have info about adapting to gluten free. The teacher suggested the core program which is mainly meat, fruit and veggies. It sounds like it should work. Thanks for the encouragement. Glad to hear your test went well, too.

What a co-inkidink...I'm on WW, too! It's very easily adapted to gluten-free, and I eat flex, not core. It's really easy, actually. Core might be easier for you in the beginning of being gluten-free, while you're learning about what is and isn't gluten-free. I'd reccommend Tinkyada pasta, it's made from brown rice and has the same points value as normal pasta, it's tasty, and it's core!

Positive bloodwork is a positive diagnosis. A biopsy can only rule celiac in, not out, since damage can be patchy or further down the intestine than the scope can reach. I say go gluten-free and skip the expensive gene test unless you need it for peace of mind.

And welcome!

Maltodextrin is made from corn. The "malt" in the word is a misnomer and has nothing to do with malt at all.

My god, someone would actually rather be skinny with a completely f*cked small intestine than be overweight with a perfectly healthy body?!?! I have one thing to say to that...

#$*(@&#$*(^$)(!@&*$*()&!^@*&^%#^@&*(^$@!!!!!!

Good lord people are morons...

I understand the plight of all of you that are really skinny because of celiac, but it's not any better to make fun of overweight people. It is, of course, also possible to have a f*cked up small intestine and be overweight. So it's just as hard being overweight and having this without the vain benefits.

I *do* wish that I was skinny with a completely screwed small intestine, because if you're overweight with all the same problems, you feel a bit cheated. I mean, seriously, if I have to be this sick and still malnourished, couldn't I at least lose some weight in the process? Gaining 5 lbs a week instead of losing it when you're sick isn't fun either.

I'm slightly overweight, not skinny, but still have the same symptoms, pain, etc. I'm one of those people who has always been slightly overweight, not obese, and can't seem to lose that last 20 pounds no matter how much I exercise, how sick I get or how little I eat.

I've heard an equally frustrating comment several times. It goes like this: "You can't eat wheat or milk or eggs or soy? Oh my gosh, if I couldn't eat those things I'd be SOOOO skinny!" Then they look at me with a kind of sheepish "Oops" look.

I get that too, and especially got it when I was first diagnosed. It's almost as bad as being asked if you're pregnant and you're not.

Those things weren't made with wheat flour, they were made with white.

That bugs me more than anything....what is "white" made out of anyway in the minds of these people

Oh, another annoying moment: I was at the salon yesterday (aveda) and the chicky was getting frustrated that all the styling products they had had gluten of some kind in them. As I was reading the labels, the lady in the chair next to me said, "oh, that must be awful!" Yes, lady, my biggest problem with this is finding product.

Email Scott with your request, and he'll change it

You're gorrrrrrrgeous!!!

I'm going to bang my head against the wall. Remember all the troop drama from, oh, A MONTH AGO??? The parents who staged the coup CANNOT JUST LEAVE US ALONE AND GET ON WITH THEIR LIVES!

We're not cooperating with all of their demands, so they went over our heads, over the service unit director's head, and took it to council. Over badges. They're too chickenpoop to call either me or my co-leader at home outside of the times of 9am-5pm M-F when they both know WE WORK. They won't try our cells either. And then they complain that they can't reach us. TO COUNCIL. They already unsuccessfully tried to freeze our bank account because they wanted the money out of it. They also didn't like the answers the service unit director gave them either, which is why they went over her head. Even though council is the one that gave her those answers.

And then one of them had the nerve to come up to us at an event last weekend and pretend that nothing happened.

WHAT IN THE HELL IS WRONG WITH PEOPLE?!?!?!?!?!?!

OK, fruit is NOT the enemy.

You've been avoiding fruit?!!? Bad Vincent! There are some fruits that you might want to limit for their high sugar, like grapes, but fruits like oranges, apples, bananas, mangos, pineapple... Those are all quite good for you, and it's really the refined crap sugar you want to avoid. Fruit has vitamins, and fiber...they're good snacks, even for hypoglycemics. Apples and oranges, especially, because of the higher fiber content.

As long as your fruits aren't injected with high fructose corn syrup, I think you're ok

Fruits, veggies, brown rice, bob's gluten-free mighty hot tasty cereal, grits, polenta, yoplait yogurt, eggs (good quick source of protein, just keep Tim away), almonds, peanuts, peanut butter, string cheese, rice cakes, juicy juice, oscar mayer lunchmeat, easy mac (you can always eat it at work if you're ok with eating gluten outside the house), kraft cheese, Amy's meals, ham, bacon, hot dogs...

Food is pretty easy to find at Kroger, I barely buy anything from wild oats or Whole Paycheck...

Meh, if I was sick for 4 years, what's another 3 months?

I'm not sure if hypoglycemics fight lows the same way.

But T1 diabetics follow the rule of 15's.

15 grams of fast acting carbs (no fat!!), wait 15 minutes, test

if still low follow again

if not - follow up with a protein source

PB crackers, cheese stick, glass of milk.

Yeah, I do it pretty much the same, except that I don't test. I have quick sugar, and then wait long enough to be able to eat something (when I'm confident I'll be able to chew and not throw up)

Yet another excuse...erm, reason for me not to eat beets! Having amazing technicolor stool is enough for me, thanks

OK, question. Is it true that Kraft and Unilever and a few other manufacturers will label allergens? So does this mean that the "modified food starch" on their labels will definitely state if it is wheat? If it doesn't say does that mean it's corn? This can be sooo confusing . Just when I think I'm getting a handle on it I get glutened!!

If the food starch is wheat, it has to be listed by law under the new allergy labelling legislation. Beware of old labels, though. If the label says modified food starch and it's a trusted company like Kraft or Unilever, it's always corn unless otherwise stated.

Be glad she didn't bring you back Ugg boots. Blech

My doctor said that studies have come out showing that IBS is often caused by a seratonin imbalance, so their starting to prescribe SSRI's for it. Go figure.

What do you do for a mid morning snack then?

Usually string cheese with fruit or nuts or something...

Earlier this week I had skittles as a mid morning snack...not a good idea. Yes, I knew better

and yes I paid for it

I noticed a few peple disregarded the post ....and its really like celiac...when you tell people they are "yeah sure" ..."how's the weather?" as if you just told them to wear tinfoil hats against aliens stealing your thoughts.

Personally, when I saw that I stuck my fingers in my ears and shouted "LALALALALALALALAIcan'thearyouLALALALALALA"

and, unfortunately, I already knew they did that for a lot of produce, like apples.

...and then thought about the hours of Saturday's farmer's market

What kind of comment is that coming from a foodie!!??? Has WW driven you mad?

Granted, sometimes it might be handy...

Just because I like cooking food doesn't mean I have to eat it!

Besides, by the time I'm done cooking half the time, I don't want to have any of it anyway

My mourning for the loss of wheat was because I wouldn't be able to bake anymore (got over that), not because I couldn't eat it.

Frito-Lay gluten-free list as of 6/9/06: Open Original Shared Link

DORITOS® Black Pepper Jack Cheese Flavored Tortilla Chips

DORITOS® COOL RANCH® Flavored Tortilla Chips

DORITOS® Fiery Habanero Flavored Tortilla Chips

DORITOS® Guacamole! Flavored Tortilla Chips

DORITOS® Mini COOLER RANCH® Flavored Tortilla Chips

DORITOS® Natural Cool Ranch Tortilla Chips

DORITOS® Natural White Nacho Cheese Tortilla Chips

DORITOS® Ranchero Flavored Tortilla Chips

DORITOS® ROLLITOS® COOLER RANCH® Tortilla Snacks

DORITOS® ROLLITOS® NACHO CHEESIER® Tortilla Snacks

DORITOS® ROLLITOS® Queso Picante! Tortilla Snacks

DORITOS® Salsa Verde Flavored Tortilla Chips

DORITOS® Spicier Nacho Flavored Tortilla Chips

DORITOS® Taco Flavored Tortilla Chips

DORITOS® Toasted Corn Tortilla Chips

OK - So I just talked to my Dr.'s PA (not the one I normally see, but they're both good) and she also just heard of abdominal migraines for the first time today (not from me). She said that what is typically prescribed is a drug called amitriptyline, which is an old old proto-antidepressant. What it does is calm down the nerves in the GI tract (instead of muscle fibers like bentyl and levsin) and prevents the spasms from happening. It's a low dose (much lower than when it was used as an antidepressant) so the side effects shouldn't be bad, except that it causes sleepyness, so you take it at about 7pm. The downside is that it's daily, not PRN. It's preventative. It's actually used as a preventative for head migraines, too. I don't like having to take a drug every day, but I suppose it's worth it if it works. I'm also only committed to it until my follow up with the Dr, which is in 6 weeks. Hell, they've ruled out everything else!

Well, at least it's cheap

I'll also add that I've run the gamut of dietary restrictions for this thing, cutting out this and that and etc and not having much happen to help it. I went on a severely restricted diet when it first started happening, since it scared the bejeezus out of me. I'm more jaded about it now In my case, I'm 98% sure that it's not food related.

Couldn't I just take some sort of nutritionally complete super pill instead of eating?

Glutino and Gluten Free Pantry merged, so now I've been seeing more Glutino products locally. I think that is helping to get Glutino out with the distribution GFP has. I haven't bought anything yet, but it looks like I should!

OKay so your method is load up on grain based carbs first thing? All my carbs at breakfast are from the cearel (corn grains), well copuple from the milk.

Ovaltine?? Isnt that packed with sugar? Maple Syrup? These are things I though I was to aviod?

I wouldn't call it loading up. Look at the portions I had: 1 waffle (half the serving) with 1 cup of milk (full serving, also serves as my protein) with ovaltine (not full of sugar, compared to things like nesquik, and I only use half the serving) and 1 tablespoon of PURE maple syrup (better on the GI index than sugar)

Little bits of sugar aren't bad. It's when you have say, a bag of skittles in a sitting that you come into problems. Natural sugars are much easier on your system, and give you a quick shot of energy.

My method for breakfast is to make sure I get at minimum some carbs and significant protein, preferably also some fruit. That's what I find works for me, I have to have grain of some kind with protein of some kind, or I get thrown off. I strive for balance

Oh, and if I'm not mistaken, corn metabolizes pretty quickly, and especially processed corn in the cereal wouldn't last long in your system.

Chelsea, I know I'm probably very late in noticing, but HOW did you get your penguin avatar to have a kitty head????

I googled him

I don't know what the heck I googled to get that result, but I've had the image on my comp for a while.