how much do you think about it?

[canadave]

Hi all,

Still trying to come to grips with this. I'm better than I was two days ago...still not quite there yet though

Can folks who've been dealing with their gluten-free diet for a while tell me....how much do you "think" about it? i.e. once you're settled in, I know you have to read labels when grocery shopping; but at home, how much does the disease "get in the way" of things?

If I could get this to the point where I find I'm barely thinking about the fact I have a disease--only thinking about it when I'm doing things like shopping for ingredients--then I might be okay. Right now it just sounds like the vigilance required is almost a full time job for everybody in the household. Is the inconvenience minor, major, a small thing?

Also--I've bounced this other question off folks in this forum and another celiac forum. I'm thinking my endoscopy will be in July at earliest. Half the folks I ask seem to think that given my tTG positive test, I should just forgo the biopsy and start immediately on a GF diet. Others think I should wait it out and get the biopsy confirmation. Is there any MEDICAL opinion on this sort of situation? i.e. is it medically recommended to (a) get the biopsy to confirm or (b) start the GF diet immediately to avoid further poisoning? My doctor had no strong feelings one way or the other....and from everyone else's responses, it seems to be a matter of opinion....I'm just wondering if there's any medical objective answer out there.

Thanks for listening....alone in the house for now, starting to feel sorry for myself again....wondering if I should redo the tTG test just to make sure they didn't get me confused with someone else

-Dave

[voix]

Hi.

I feel for you. Adjustment to diet is really hard, until you incorporate it into your lifestyle, and, as you say, not think about it as much. It probably takes several weeks to really start making that adjustment.

As far as lifestyle goes, I have a few tips:

1. As much as you can, just get gluten out of your house. So that is finding workable substitutions for things/foods where available. Like bread and pastas that can work for the whole family, but especially yourself. I think this is the hardest part, especially with gluten issues. Just think how long it took you to figure out that you liked x brand of gluten containing bread or pasta or cracker and now realize that finding a GF favorite will take some time, too. Just be systematic about it and think of it as an adventure. After a few weeks, you'll start feeling better, so that will be additional reward and motivation.

2. Think of your lifestyle habits and try to plan in advance how you are going to handle that in a gf way. For example, I have a girlfriend with whom I spend the day shopping. Around 3 or 4 pm, in keeping with my European heritage, we stop for torte and coffee. This made me so sad--I had just got my friend to appreciate this custom, and now I am having to be gf. Very hard to find gf cake in the mall or coffeeshop. So, I am planning ahead, now, and trying to have something premade in the freezer to take with me, so when we stop, we can order coffee, and I can whip out my gf pastry or dessert.

Your habit may be something after kids soccer games, or a drink with collegues after work, or going to the zoo with the kids. Whatever, just plan ahead and figure out how to have something gf so you don't feel deprived.

3. Figure out ahead of time what is safe to eat at your favorite restaurants or find a few new safe restaurants in your area, so you know in advance where you can go when you are hungry and don't have disappointments later. You can get the Triumph dining guide, I was told, that lists restaurants by area. You can look on the websites of your favorite places and email them questions in advance, for example.

4. Okay, and to be honest, because I find that very helpful for myself, there maybe things that you find have no good substitute, or your family can't live without. So there will be some temptation there or reminding you that you can't have. For that, you just have to be strong and also grieve and say good bye. Maybe there are new things that you find that you didn't have before? Also, just think of how dangerous the bad things are for you, and how much better your body is functioning. (I have some odd problems after being poisoned, so I can't tolerate common everyday chemicals, which are in everything and everywhere. It was a brutal adjustment period, but after grieving and realizing that my body doesn't care what I personally adore, like nail polish and hairspray and perfume, I have worked to restructure my life to be safe, and instead of working with feeling sick, I try to live and stay safe. GF is just an extension of that. It has been long enough now, that I am forgetting who I used to be when I didn't have to worry about avoid things, I am also starting to not think about avoiding things, but developing a life where the avoidance is naturally built in.) GF is hard, but aside from some restaurants, it doesn't prevent you from going places and being around people. (Even eating at a friends house is possible, if you plan ahead and bring your safe food, if your host is not serving gf, or you don't want to ask.)

I guess the biggest problem with gf, or any dietary allergy, but especially gf, because it involves flour, which is in a lot of prepared food, is the lack of, or serious reduction of, convenience food. So it requires planning ahead, more time cooking on a general basis. So, once you get used to doing things like that, and it becomes second nature, you will not suffer so much.


Of course, there is more to celiac than just lifestyle and diet changes, if you have had any of the secondary physical damages, like thyroid or dental problems, etc. I guess, for me, those thoughts help me when I want to cheat and eat my favorite gluten foods. But it is hard dealing with so much at once. You just have to take it day by day--have long-term goals and immediate goals to keep you motivated.

It is overwhelming at first, sharp learning-curve, but I think after a few/several weeks, and a new habits are developed, you will be working with your new requirements and not feeling as deprived.

good luck.

[The Edifying Conscience]

As I've said many a time before do whatever you need to do to get a definitive diagnosis. It seems likely to me that having the gold star diagnosis keeps one on the gluten free straight and narrow pass.

It's absolutely ESSENTIAL that you continue to eat gluten until your endoscopy is done. Eliminating gluten from your diet before the test can cause false negatives.

As far as how long it takes before thinking about it I think it depends on a few different things. For me I NEVER think about gluten at home because it's completely gluten free. Anything I reach for at anytime is gluten free. If there's a party it's a gluten-free party. So it's not a concern.

As far as eating out, I rarely go. To me it's not worth the stress or possible physical symptoms of eating in an unsafe kitchen. I have a couple of good friends who really grasp the GF cooking thing and with a little help from me (label reading, providing some ingredients and gentle reminders) I always get a safe meal. They tend to keep it simple and straightforward...bless their hearts!

Once you're diagnosed and following the diet I believe it takes a full year to grasp the whole GF thing. It's a process and has lots of learning curves!

[aklap]

[canadave]

Al--thanks. Very thoughtfully written and very helpful, on all counts. BTW thanks for letting me know about the semi-annual blood check--I wasn't aware of that.

I'm leaning toward going through with the EGD, because I'd like a confirmation, and I'd like to know how badly my villi are damaged (have someone take a looksee). The only reason I wouldn't is if I felt that the additional damage I'd do with gluten, over the next three months until my EGD or whatever, is likely to put me over some kind of tipping point, where I'd develop a bunch of problems I wouldn't have developed if only I'd started on the GF diet immediately. I take it that's not likely (I know this is all probabilities here), so I think I'll stick it out for a little longer, since I'm not too symptomatic in the presence of gluten.

I'm going to try to just deal with this, but not let it consume my life....that's what I'm MOST afraid of, of all. If I can figure out a way that it causes very little disruption above and beyond what my life would've been like before being diagnosed, then I'll be happy.

On that note, I'm trying out this GF pasta for the first time....wish me luck!

Thanks again,
Dave

[aklap]

[aklap]

[aklap]

One other tip. I'm not sure if you can do this in the Canadian Medical system - but ask the gastro if you can be put on a cancelation list. If someone cancels a procedure, they might be able to re-schedule yours sooner.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

[cruelshoes]

[ostrich]

[canadave]

Thanks everyone for the helpful tips, encouragement, and support. I'm definitely going to do the endoscopy if at all feasible. I'd like someone to have a look and see what's up in there; whether it's negative or positive will be somewhat informative.

I am so encouraged--I tentatively had my first GF pasta last night, and it was absolutely fine! I overcooked it a bit at 9 minutes, the packaging said 7-10 minutes but I think they overestimated it (sorry Al, I didn't read your overcooking warning until today Still and all, it was fine; with sauce it tasted pretty much like regular pasta.

Question: why are there these huge warnings about overcooking it, which are not present on regular pasta? Is there something harmful that happens if it's overcooked, or does it just not taste quite as good, or does it taste REALLY HORRIBLE if you overcook it?

Anyway, I am so much more encouraged today than I've been the past few days since my diagnosis. For the first time I really think I can handle this. Thanks again to everybody for helping me through the first really rough patch, I can't emphasize how much it helped.

BTW, on an unrelated note: I felt compelled to write a "thank you" email to Dr. Chaitan Khosla, whose work with his Stanford colleagues is paying off in the form of a celiac drug in phase 1 trials right now (I posted about this in the Diagnostic and Technical Info subforum). I told him how much I appreciated knowing that people like him, who have personal connection with the disease (his wife and son have celiac) were actively pursuing a cure. Well, wouldn't you know it, Dr. Khosla wrote me back! A short reply:

"Thank you. Your words of encouragement do make a difference.

Wish you a speedy recovery,
Chaitan"

I'm sure it DOES make a difference. Feel free to write these guys and wish them well in their quest....gotta give them some incentive to keep going!

--Dave

[aklap]

[canadave]

AH--gotcha. That makes sense...it did seem to taste a little mushy. I'll be more careful next time!

[wheatsux]

It sounds like you are taking the right approach. I had dropped to 135 lbs from 175, and was very very sick before I tried the GF diet. I got better, but so slowly that I went back to NGF diet here and there. Basically, I was on the denial diet -- trying to hold on to the old habits. Once I finally gave in to the fact that I was celiac -- per my 3rd GI Dr -- I was on the road to recovery.

What I should have done was all the right tests up front. I took the blood test when I was GF, so it was negative....went back on NGF diet, got sick. Took the DNA test, stool test etc. from Enterolab (here: https://www.enterolab.com/StaticPages/Frame_TestInfo.htm ) Was positive on all of them, and FINALLY gave into the GF diet.

Like you, it didn't make sense that as a 37 year old I would all of the sudden be "allergic" (it's more complicated than that, as you know). So I fought it. I brewed my own beer (and was pretty good at it), and lived on a diet of pizza, Taco Bell, Subway, burritos, french bread, pasta, etc. I was not a junk food guy, or so I thought, but it was not exactly nutritious. I travel constantly for my job, so this "no quick food" diet is difficult; entertaining is difficult; having restaurant people who don't "get it" is frustrating. Now that I am GF I am super sensitive, and there are times I get sick. My blood profile of vitamins, aminos, hormones, etc., is just garbage -- bottom 5% on everything. This makes me very fatigued. (http://www.metametrix.com/content/DirectoryOfServices/0090IONPediatric-BloodUrine ). These are the bad things.

Here are the good things.

1. I did, and hopefully you are about to experience a whole new healthy level. Better than you were when you were before you got sick. When I'm healthy (and I still get sick), I'm playing soccer 2x per week (I'm 40), and working out 3-4x per week as well. Highly nutritious food that your body doesn't have to fight will provide you that opportunity.

2. I learned how to drink wine (fought that too at first). And guess what, this beer guy LOVES WINE. What was I thinking ??? Oh, and vodka tonic is a great invention.
3. We discovered that my son is celiac, and it healed a lot of major problems he was having. That was huge.
4. my sister was on many meds for her depression, chronic fatigue, etc. She had no GI symptoms of Celiac, but tried GF as a last resort. Now 1 year GF, and she is drug free, and symptom free, with 2-3X more energy!
5. I found a couple of restaurants that we go to a lot, vs. a lot of restaurants that we went to now and then. I'm at PF Changs once a week. Higher end steak places are very safe. I blame my need for an high priced Filet on my need for safe eating.
Almost everywhere I travel, I go for a nice steak dinner -- they usually "get it", or can accommodate easily. Basically, if a restaurant really has chefs, not difficult to adjust, if they assemble pre-made food/recipes, like TGIFridays, and a lot of the chains, then don't risk it.
6. We have learned how to cook, and cook well, because HOME IS SAFE !!. It was always on our list of "to do's" -- you know, get into fine food and beverages. But now we have done it -- my wife is a great cook, and I'm OK..... we know how to whip up a quick lime marinated flank steak, with grilled potatoes, or a peanut satay sauce for grilled chicken, etc. I eat some great stuff -- Grilled Chicken with Risotto on a Tuesday night? Are you kidding me?
7. I'm thankful I have this illness now, not 10 or 20 years ago. Today there are food options, and everyday more people are informed. There are places like this site, and lots of nutrition studies, etc. you can get ideas from.
8. I'm hoping I will be healthier long term than if my genes hadn't "woken up", and I had just gone through life eating nutrition-free processed foods, vs., the lean meats, fruits, veggies, etc. we eat now. I.e. My grandfather died in the 60's of colon cancer -- was he a celiac with only mild symptoms?
9. We go to a local Asian market for rice noodles -- they have all types of spaghetti shaped noodles, for about $0.67 a package. As to cooking, we just stand there sampling now and then. Always works best.
10. We bought a rice cooker, and always have fresh rice ready to go at a moments notice --- keeps it hot and good for 2 days. (you can buy both the cooker and the big bag of rice at an asian market). This replaces our starch source that used to be bread, pasta etc., for meals.

Be encouraged. I feel now, like it's pretty easy to live the GF lifestyle. Cooking at home is key, but also finding a couple of great places to go out works well too. The only thing that doesn't work is impromptu - unplanned outtings. Unless it's a high end steak and seafood place, then no need to call ahead !

C
_________________
3 of 4 kids Gluten Intollerant.
Even the dog is on a special diet.
Fish seem ok.