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#1 The Glutenator

 
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Posted 07 October 2010 - 06:56 AM

I just got back from my GI and the appointment was really bitter, but a little sweet.

The "sweet": While not necessarily good news, all my biopsies from my last scope came back positive. About 8 months ago I had bloodwork that was through the roof so I went to see a GI. He took biopsies then, and all were negative. Between the surgery and getting the results I had gone gluten-free and already started to feel better. He claimed I was "gluten sensitive with coincidentally ridiculously high antibody levels". I was damn confident I was celiac though, and went to see another GI. He re-did my blood work and scope. Even though I have been very strictly gluten-free for 7 months my Ab levels were still soaring and, lone behold, all the biopsies were positive. While not great, at least I have the biopsy verification of celiac and am now under the care of a really good GI.

The "bitter": No drop in Ab levels or reduction in intestinal damage after 7 months gluten-free! So now the doctor wants me to be over the top...nothing cooked at friends houses, from shared facilities, etc etc etc. As a PhD student with little time to cook this will be a huge adjustment as pretty much everything I will be eating will be from scratch! Good-bye prepared soups, nacho chips, chocolate bars, ice creams and some frozen meals. Ugh! I am officially taking today to sulk! Apparently if this doesn't work, the next step is steroid therapy.

And, my mom had positive blood work. She went for her biopsy last week. With who? The first quack I saw!
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Fighting celiac one gluten-free bite at a time

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#2 Jestgar

 
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Posted 07 October 2010 - 07:13 AM

I have a full time job, a 3 hour commute, volunteer activities, and I take classes. There are a few cracker type things I buy, but 98% of my food I make.

Early Saturday morning I do my grocery shopping and buy meat, veggies, fish, and fruit. I come home and throw meat and veggies into the crockpot, filling it as full as I can. Then I have 6-8 hours to do whatever. When the first pot is done, I divvy it up into plastic freezer containers and start the next crockpot full of food. The second one usually goes overnight, so I do chili or root veggies, something that can cook longer. In the morning I divvy it up and start the third batch. The third one is frequently something I'm not planning on freezing, like sweet potatoes or sumpin' I can eat for a few days at home. I bring frozen containers to work and microwave them.

Since fish doesn't crock well, that's all I eat on the weekends. I also buy bags of frozen veggies so I have something around that won't go bad (as fresh does).

Periodically I do 'no-shop' weekends and only eat what's in my freezer. This keeps my stock rotated and I get the occasional weekend off. :)
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"But then, in all honesty, if scientists don't play god, who will?"
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My sources are unreliable, but their information is fascinating.
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#3 i-geek

 
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Posted 07 October 2010 - 08:12 AM

I'm a PhD student with an hour commute each way to campus. On average I put in 9-10 hour days in the lab (trying to write up two papers now so I can graduate someday), and I also participate in volunteer and social activities. Like Jestgar, the vast, vast majority of food that I eat is made at home from scratch as much as possible. I've been taking a few more chances lately and have really paid for it. In the interest of full disclosure, I do have a husband who helps out but I end up doing about 90% of the grocery shopping and meal planning because I've done more research on what I can eat safely.

Last Saturday I did a big grocery shopping trip and then crock-pot roasted a chicken and served it with oven-roasted brussels sprouts, butternut squash, carrots, and a raw beet-apple slaw. The leftover veggies went with breakfast the next morning as well as Tuesday night's grilled fish and rice dinner. The leftover chicken went into homemade fried rice for Monday's dinner, which also provided leftovers for Tuesday lunch. On Sunday I made a huge pot of bean-potato stew and a loaf of gluten-free bread. I've been eating the stew for lunch all week and used some of the bread to make grilled cheese sandwiches for last night's dinner. I think tonight's dinner will be grilled burgers with a side salad (I make my own vinaigrette- super easy) and sweet potato oven fries (from fresh-cut potatoes, not frozen). Since I get home late on weeknights we keep those dinners simple.

This is a big shift from the way the majority of America eats. It takes getting used to the planning, but once you've got that down it's just another task to add to the list. An added bonus is that you'll be healthier for it in a lot of ways. Since you're a student you need to be able to plan things around classes or an otherwise weird schedule, so I would advise getting a crockpot. We also bought a rice cooker when I first went gluten-free and we use that thing at least twice weekly- a good $30 investment for us. A Foreman grill might also be a good idea for you- you could buy packs of, say, chicken breasts, freeze them individually, thaw one in the morning and grill it up quickly at night.
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#4 Skylark

 
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Posted 07 October 2010 - 08:57 AM

I feel for you. I had to deal with celiac during my Ph.D. too. In fact, if I hadn't figured it out I probably wouldn't have finished school. I'm still in a postdoc and no less busy. I tend to do best if I avoid eating out and go easy on processed food.

When I cook, I cook in big batches. I freeze containers of soup, or cook 2-3 servings of meat so I can bring it for lunch. I like to cook bean soups, lentils, or sometimes I do homemade chicken soup. Like i-Geek, I'll cook whole chickens and bits of chicken go into fried rice, chicken salad, or into the freezer for later. I always have bananas and apples around that I can grab for a quick snack. I hard boil eggs by the dozen, as an egg and gluten-free bread makes good, quick breakfast. I head into campus with my leftovers, another egg, and ziploc bags of grapes, baby carrots, sugar snap peas, or cauliflower for snacks. In the wintertime when I'm wanting richer food, I'll set up my crockpot at night with beef and potatoes or ribs in gluten-free barbecue sauce and put it in the refrigerator. (I have one with a removable ceramic liner.) In the morning all I have to do is put the liner into the crockpot and turn it on to low.

I believe the antibodies are supposed to fall in refractory celiac, so you are probably still reacting to something. If I was in your situation, I'd drop pretty much all products made from grain with that study showing traces of gluten contamination in flours. You may not be tolerating the inevitable few ppm in "gluten free" breads and grain products. Don't eat oats, of course. I'd also entirely remove casein from my diet, as there was a study showing a couple celiacs who cross-reacted to casein with the full autoimmune reaction. You can always try adding it back.
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#5 The Glutenator

 
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Posted 07 October 2010 - 09:11 AM

What would you say about eating these:

Question:
How does Van’s ensure your wheat/ gluten free waffles are really free of these allergens?

Answer:
Here at Van’s, we work hard to ensure that our wheat/gluten free waffles and French toast sticks are free of gluten, dairy (milk) and egg. Van’s follows good manufacturing practices and cross-contamination prevention practices. Those practices include:

· Test all incoming gluten-free ingredients to ensure they meet our standards

· Thorough sanitation of all equipment used in the production of our wheat/gluten free products

· Disposal of the first two cycles of waffles produced

· Strict segregation of all ingredients used in our wheat/gluten free products

· Production in an allergen controlled area within our production facility

In addition, we conduct regular testing for the presence of gluten, dairy (milk) and egg in our wheat/gluten free products. All of these practices ensure our commitment to keeping undeclared allergens out of our products and all of the good taste in!


or these:

Are Nut-Thins® wheat and gluten free?
The ingredients used in Nut Thins® do not contain gluten. Nut-Thins® are processed in a facility that is certified by the “Gluten Free Certification Organization”. In addition Blue Diamond has every production lot of Nut Thins tested and certified for gluten.

???

There is just so little that is made in an actual gluten-free facility!
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Fighting celiac one gluten-free bite at a time

#6 Jestgar

 
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Posted 07 October 2010 - 09:25 AM

There is just so little that is made in an actual gluten-free facility!

that would be why we're telling you how much trouble we go to making our own food......
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#7 The Glutenator

 
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Posted 07 October 2010 - 10:50 AM

I know what you are saying...I am just having a rough day taking it all in. Going through the label reading etc on the gluten-free diet was hard, but I have adjusted and was finally getting used to things. Now food has just become even more of an effort. I'm in my early 20s and this "isn't how it's supposed to be." My gluten-free mesa sunrise cereal that I have every morning, the nut thins I eat at lunch, the etc, etc, etc are now all off limits. I know a lot of you are already on this more extreme track, but boy oh boy. I was stable, gluten-free, and content. Now I just have to adjust all over again. Hopefully it will work and reduce the damage, because the prognosis for refractory celiacs is not too great. I am worried now about the inconvenience, yes, but also about trouble having babies (not now but maybe eventually) and cancer and all that too. Thanks again for listening and your suggestions.
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Fighting celiac one gluten-free bite at a time

#8 Jestgar

 
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Posted 07 October 2010 - 12:15 PM

I didn't mean to sound like I was picking on you. :) It's just a new reality for some of us, and once you adapt to it, it's much less of an issue. Think through the different approaches people give you, and start with what seems like it best fits your personality, and go from there.

Try the boiled eggs for breakfast, a bag of nuts for snack (leave in your desk at school), bring baggies of veggies when you think of it, find the nearest store so you can always run and get a bag of pepperoni or something for emergency lunches.

Just start trying different things. It will work out.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#9 sb2178

 
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Posted 07 October 2010 - 01:08 PM

I actually think that mesa sunrise made me sick, FYI. I also switched to soy milk that week, but the soymilk lasted longer than the cereal and I was better once off the cereal.

Cooked mixed grains like rice/millet/quinoa with something milk-like, dried fruit, spices, and nuts/seeds does quite nicely for a cereal substitute. Also, can cook ahead and freeze (better to add milk immediately prior to cooking). Custard is also an option that can be made ahead. Or... I had cold turkey and sauerkraut for breakfast.

I'm a giant pot of soup made on Sunday nights kinda cook. Typically supplemented with a pot of grain or homemade baked good. When I don't bake, it's a heavy fruit week. Canned tuna is a desperation meal.

But, that's going to bite. I think most of my grains and nuts come from shared facilities...
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#10 tarnalberry

 
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Posted 07 October 2010 - 01:35 PM

See, that's the thing, "this isn't how it's supposed to be" is bubkis. Seriously, 75 years ago, we didn't have all this premade convenience crap. Doing the cooking (even simple stuff) IS how it's supposed to be. Oh, sure, that doesn't make it any easier when "everyone else is doing it" (eating premade crap :P), but still.

There is almost NOTHING I cook that I don't make leftovers. I've got a five month old and there are few times that I can guarantee that I can cook anything - sometimes getting to the store is difficult! ('Couple's Time' for my husband and I is not infrequently a late night trip to the grocery store, with the baby, to actually get food in the house again.) Get things that don't need cooking (carrots and hummus), get things that can be microwaved (frozen mixed veggies), or things that can be cooked quickly (eggs and canned beans), and then do the large meals whenever you can. (Beef stew and chili are the fastest things I know of to make in very large batches for leftovers. And the chili freezes VERY well.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#11 gf_soph

 
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Posted 07 October 2010 - 06:25 PM

Firstly, I totally get where you're coming from. I also know how easy it is to convince yourself that you should be able to eat a certain way. But at some point you have to listen to your body and your test results. Also realise that it might not always be this way, but by being super careful you will likely prevent your health problems from progressing.

It is a genuine pain to have to cook everything yourself when you are busy already. But consider that the alternative may be to continue eating food that 'should' be safe, which damages you to the point where you drop out of school and can't hold down a job. Not trying to be too dramatic here, but it does happen to some people.

I'm now 2 years gluten free. The first 6 months I ate strictly gluten free with a couple of accidental glutenings, but still having gluten free processed foods. I'm in Australia and our gluten free level is 5 ppm, but my blood antibodies didn't fall. I stopped eating out anywhere, they still didn't fall. My entire kitchen is gluten-free, my body products are, my levels are still above normal. The only times my levels have fallen properly is recently when i don't eat out anywhere, prepare my own food, don't even use a clean glass at a friend's house (got glutened!), and am not eating any processed foods except milk, ricotta, sustagen and occasional safe potato chips, due to an elimination diet.

I know that it really does suck, and it's ok for you to feel that way. But I do think the other posters here are right. Refractory sprue is a serious problem, and you sure don't want to take steriods if you don't have to. You will get used to cooking everything, and you may be able to return to a more 'normal' style of eating when you recover. But recovery has to be your number one priority.
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#12 The Glutenator

 
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Posted 08 October 2010 - 05:43 AM

Thanks gf_Soph. It is nice to know you have shared some of the same frustrations but have made it OK!
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#13 The Glutenator

 
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Posted 08 October 2010 - 09:59 AM

Question to all you very diligent people...have you found any just chocolate (even just plain dark chocolate) that is produced in a gluten-free facility? What are some quick treat ideas you have? Thank you all again for your ideas!
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Fighting celiac one gluten-free bite at a time

#14 The Glutenator

 
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Posted 08 October 2010 - 10:01 AM

PS I do bake quite often and am assuming simple sugar, cocoa powder, etc is OK, is this a safe assumption? And yeah, as per my last post if I don't feel like baking and want something quick and sweet, what do you recommend?
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Fighting celiac one gluten-free bite at a time

#15 dilettantesteph

 
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Posted 08 October 2010 - 10:09 AM

I am one of those who has to make all my own food from scratch. It takes more time, but...I feel so much better now and can accomplish things so much more efficiently, that I actually have more time. The improvement in health is totally worth all the extra time. I spend that extra time preparing food for my very sensitive son too. My brain works better too. That is kind of important when you are in a PhD program. You can do it. It isn't as hard as it seems once you get used to it. Good luck.
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