GlutenDude

Hang in there Lincoln. I think we all go through stretches like the one you're going through. It passes. I've been a celiac for five years and the first three years were hell. But it does get easier and before you know it, it becomes...normal. Yeah, it's a pain in the neck still and yeah I wish I didn't have celiac, but at the end of the day, there are worse things you could have.

Try to keep the focus on the positive and don't let everyone get to you. They don't know what we go through and nobody else can truly understand.

You'll be fine.

Gluten Dude

I always tell people not to worry about me. Simply because even though their intentions are good, it is much better when I'm in control. I actually hate all the attention that celiac brings. Honestly, we can talk about other things then what I can and can't eat.

Bad news first: no beer. Yep...that hurts. Though some decent gluten free beers are coming to the market. And I would avoid most liqueurs.

Good news: most liquors are safe (vodka, rum, gin, tequila, scotch, etc). And wine is also safe.

This frustrates me to no end! Does he not understand the seriousness of the disease? I wrote a post on my blog on the lack of spousal support and how it makes things so much more difficult. You need to change his way of thinking immediately or your daughter will suffer. Arghhh!

Tried a new stuffing recipe. The flavor was great. The consistency was a whole different story. Used Udi's bread and it just didn't hold together. Felt like I was eating a rice stuffing. But all in all...a great day.

The death of spontaneity when it comes to eating.

Laziness. That's what I attribute it mostly to. I was unbelievably lucky to have a GI that diagnosed me immediately. It helped that I kept a food journal for a few weeks beforehand (pasta, bagels, pasta, bagels, LOL). But the more I go see doctors, the more I'm convinced the majority of them (not all) are too dang lazy to put the effort in to get an accurate diagnoses.

Point in case: I've had a sore throat for about five weeks. Normally, not a big deal, but with my celiac and other medical issues, I went to see our family doctor. What does she do? Sends me to get an CAT scan. Really? For a sore throat? Needless to say, it showed nothing, but can't wait to get my bill for that one. Two weeks later, my sore throat is gone. Ugh.

I'm with you Raven. The less time and money spent on doctors and drugs, the better.

Gluten Dude

Hi Bella. It sounds familar, but one thing about celiac...there are no "standard" symptoms. Everyone seems to have their own story. Please get yourself to a qualified GI (who is familiar with celiac) as soon as possible. And keep eating gluten until you get tested. Good luck.

Yes...your doctor messed up. You cannot be gluten free prior to the blood work or the results will not be accurate. You need to make sure you have gluten in your system. It is amazing to me the number of horrendous doctors out there.

What is the "gluten challenge"? Do you mean just staying off gluten?

Hi Rachel. So sorry to hear what you are going thru. Not sure what your doctors are doing. If they suspect celiac, they need to get you in for an endoscopy and blood work immediately. Those are the ONLY two methods to diagnose celiac disease. If you don't have celiac, then you will obviously need more testing. If you do have it, then you need to stop eating gluten at once (but not until you've been diagnosed). Going on a gluten free diet seems overwhelming at first, but in time it becomes a part of who you are. I won't see it's easy, or always pleasant, but it is indeed doable and perhaps imperative for your health. Please keep us posted.

Gluten Dude

Patience. Patience. Patience. When I was first diagnosed, I read all the stories how people stopped eating gluten and felt better immediately. So I expected it to happen to me. But, alas, it took me a few years to really start to improve. Just keep being extra careful about what you eat, exercise when you can and in time, your body will begin to heal.

I would stay away from anything with the word "bar" in it unless it's serving alcohol. Way too much risk of cross contamination. Too many hands in all of the items if you know what I mean.

I'd add something to that last one: Don't let it stop you from going out if your symptoms are mild enough or short lived.

That's good advice and I certainly didn't try to minimize it. As a matter of fact, I'm one of those who is out of commission for some time if I get glutened so I hope I didn't come across flippant. Always err on the side of caution, but don't become a hermit for fear of getting glutened.

Are you still eating dairy? That's the first thing to cut out and if that doesn't work try cutting out soy.

I agree! I've been with celiac for five years and in the last month I've given up both dairy and soy. Definitely feel a bounce back in my step.

I'll pass you a few truths. Truth #1: You have little control over what happens behind the scenes when you go out to eat. Truth #2: You will get glutened once in awhile if you eat out. Truth #3: Don't let it stop you from going out.

I am as diligent as they come. And yes, I eat out less often than I used to. And there are only a handful of restaurants I go to. That is the key. Find a few that you can trust and simply stay away from the others if you can help it. It's a drag, but you will adapt.

And even the ones you can trust, you must stay on top of. We eat sushi out pretty often. Been going to the same place for a few years. The other day, I happen to notice the sushi chef put his bare hand into the wasabi. If he's got wheat on his hands, I'm screwed. Will I stop going there? No. But from now on, I will try to bring my own wasabi. Like I said, a drag, but you get used to it.

Hope this helps.

Gluten Dude

I get fatigue and brain fog like you wouldn't believe. I've tried everything under the sun (including the sun!) and what works best for me, believe it or not, is exercise. I know it's the last thing you feel like doing, but getting moving and getting the endorphins going seems to be a real quick fix for me. Does it last? No...but it's a good short term solution.

I know this is the last thing you want to hear...but you have to be patient. It took me a few years to start feeling better and five years later, still struggle. And I am as careful as they come. I would get another endoscopy and see if your intestines have healed at all.

Good luck and keep us posted.

Gluten Dude

Hi Cameron. Welcome...and I'm sorry you have to be here. Here are some thoughts to help you out:

1) Always, always, always, err on the side of caution. I cannot emphasize this enough.

2) Make sure your wife is 100% on board and is your biggest advocate.

3) Buy separate utensils for yourself. Everything we bought was red to make it easier to differentiate. Things you'll need include your own toaster, cutting board, silverware and pots and pans. Yep...it's expensive to have celiac.

4) Have one counter in your kitchen completely gluten free at all times. It should be off limits to anybody but you.

5) Keep your food separate from food with gluten. In the fridge and freezer, you should have your own shelf. In the cabinets, if you have a big enough kitchen, try to get one cabinet that is just your food. It makes it so much easier when things are separated.

6) Be patient. Odds are...you will get CC. It stinks but it happens.

Keep the faith!

Gluten Dude

Naturally, if the doctors can't find a cause, it must be the patient's fault. This kind of thinking infuriates me. I'm five years in, and still have more bad days than good. And while it's possible I've gotten cross contaminated here and there, I can't tell you how ridiculously careful I am. My own silverware, counter top, etc. To insinuate that it must be my fault is lazy and insulting.

You've got to give yourself some time. Don't be too hard on yourself and on those around you. I'm five years in and honestly have just recently 100% come to terms with the disease and the limitations it imposes. And the fact that gluten-free has gone mainstream and idiot celebrities are endorsing it is just making our journey more difficult.

Hang in there. I promise you it will get easier.

Education is key. Make sure he knows how sick you can get if you have even the smallest bit of gluten. And it's not just a short-term thing. You are damaging your body, which could lead to cancer, etc. Sometimes celiac gets stuck with the "food allergy" label, even though we know it's not. Frustrating indeed.

I'm not sure I understand. Instead of guessing, why don't you just get tested for celiac?

Again, physical reaction does not equal bodily damage. There is no acceptable amount of gluten if you have celiac. I know it's hard to hear this. It took me a long time to accept it. But please do not fall to temptation. It's not worth it.

My most recent "glutening" was from trace amounts in a Bob's Red Mill gluten-free flour mix used to make cookies. I had only one cookie, so the amount that entered my system had to be VERY small. My effects lasted about 24 hours.

It's really hard when you get cc by something and don't know what it is. It could be something very small that you're getting each day..or it could be one thing that's giving you symptoms from just one dose?

It's got to be very hard for you with a little one? Their little hands go everywhere..and so many things go into their mouths and could cc you.

Drink a lot of water to help flush your system.

(((hugs)))

Not to get off topic, but curious. How did you trace it to the flour?

Stop eating all gluten immediately. Even if you have no reaction, you are doing damage to your intestines, which can lead to some really nasty stuff down the road. Even if you have what your doc calls "mild celiac", celiac is celiac and there is no cure.

And your doctor said you can have gluten sometimes?? Ugh. Please find another doctor. Your life may depend on it.