Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

To Those Who Understand...
0

20 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. :)

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

What would you say about eating these:

Question:

How does Van

1

Share this post


Link to post
Share on other sites




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......

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.)

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Sorry it's going to be difficult for a while!

And a few other things that, I'm sorry to say, will add difficulty.

1. Gluten free facilities may STILL make foods that have too much gluten for you to handle because the grains come from somewhere else and can get contaminated on the way into the facility. It differs how 'gluten free' the gluten-free facilities actually are, I've found out.

Bob's Red mill, for example, tests the grains coming in and they have to be less than 20ppm of gluten to get into the facility, but this can be too much gluten for me, personally. I was reacting to Lundberg rice and couldn't figure it out because it's a gluten free facility, too. When I finally called them up, they said they have a gluten free facility that only processes rice...so they don't test their products for gluten at all, not the ingredients coming in or the products coming out. :blink: Ugh.

However, for buckwheat, this place was recommended to me because they grow the buckwheat there and only mill buckwheat on the equipment:

http://www.connectmaine.com/ployes/index.html

I haven't tried it yet, but it sounded hopeful. Ancient Harvest Quinoa has done well for me as well.

2. Naturally gluten free food is probably something you'll have to chuck out the window for a while. Which means simple sugar, cocoa powder, baking powder, all that? Nope. They're not safe if they are not completely gluten-free. Or oils. Or nuts and seeds because of the processing. Sickest I ever got was off of plain pistachios. Any meat cut up at the deli is a CC risk, too, if you are really just going super-strict gluten free.

Just as an example of super-duper strict gluten-free, which is what I've had to be so far to stay safe (only a year now and still keep finding things that get me, sigh).

--I use coarse sea salt that I grind up myself. I don't use spices, just fresh herbs.

--I haven't found any safe nuts or seeds or oils yet, so I don't get to cook with oil (although olive oil seems to be one you can find safely, as some are made in companies that ONLY make olive oil). I cook squash and roast the seeds for my seed usage.

--I buy meat that is prepackaged from companies that only process that meat. I make my own broth.

--I can't get any dried fruits, just fresh fruits and veggies.

--The only safe grain I've found to date has been Ancient Harvest Quinoa. I thought a gluten-free amaranth was good and finally realized it's been affecting me and had to drop it. I'm going to be trying the buckwheat and also a teff that's from a teff-only company.

--I have to keep a pan, cutting board, etc... totally separate from the ones I use for my family, even though my family is gluten free, too. They can just tolerate more gluten than I can. :(

--I have started a garden and planted fruit trees just so I can get some of these herbs and things a little cheaper. An inside herb garden might be really useful for you, I imagine.

It's, well...yeah, it sucks. It's hard. But it has kept me healthy. Doing it in bulk cooking spurts is one of the few ways I stay sane and don't spend every second cooking. Bento boxes have been helpful, too, because then I can make a bunch of stuff and freeze if for use later in small amounts, and mix it up a bit.

Re: the steroid possibility, though? There's a study out that say the next step that seems to help the most, if going totally gluten free doesn't work, is to look at food sensitivities and allergies. I could find the link for you, if you'd like to see it?

Wishing you good luck, honestly. There's a lot of us here right in the same boat, and we're rooting for you!

0

Share this post


Link to post
Share on other sites

If you can find some safe whole grain amaranth (Barry farms was recommended to me, but I haven't tried it yet. It's on-line), you can pop it in a pan - it makes teeny, tiny popcorn like stuff. You pop it 1 Tb at a time in a hot pan. You can mix that with gluten-free honey or agave syrup (they sell this in bulk on (Company Name Removed - They Spammed This Forum and are Banned). It's supposed to be gluten-free, from madhava, but I haven't tested it) and a drop or two of fresh lemon juice and roll it out into a bar. It's a candy in Mexico called Alegria. The humidity affects how well it holds together, but it's pretty quick and tasty.

Sadly, I have yet to find a chocolate that didn't do me in.

But for quick sweets - honestly? I haven't found any I could eat yet. Probably your best bet is fruit and a dip, like honey or agave syrup, if you can find one that is gluten-free.

I'm kind of hoping someone might have something sweet you can make that doesn't require sugar and other processed stuff. I'd jump on that like crazy!

Oh! And I just thought of something - some celiacs still have trouble with gluten-free oats or quinoa - react just like it's wheat, rye, or barley. If you've been having a lot of quinoa or gluten-free oats, maybe you could drop those and it might help?

0

Share this post


Link to post
Share on other sites

Hey Glutenator,

You posted about Vans' waffles. I had to quit those when I quit soy. Or rather soy quit me, something like that. So, although they seemed like a good thing, gluten-free and all that, for me they were not so fun. Celiacs here seem to get other food intolerances showing up fairly often. And the other food intolerances can cause plenty of problems too. Gluten can makes us sick, but these other food intolerances can do quite a number on us also. That is a secondary advantage for you if you cook your own food from scratch. You will know what you are eating, every ingredient, and can probably pick out foods that may be bothering you easier.

I tend to do what other posters have said. I cook large amounts of food at once on the weekends and freeze some for later. I buy the family size packs of chicken, or hamburger or whatever is on sale and cook it all up right away. Then I can make rice or quinoa or split pea soup or something else to mix the meat into. I get Enjoy Life brown rice wraps and make wraps with rice or whatever and some kind of dead animal, oops, meat, that is! When I first started doing this I would make somewhat complicated meals of rice and various flavorings etc. But after a while I found that since I was new to the diet I ended up making myself sick by adding too many spices etc I wasn't sure of. So instead I started making very plain rice or quinoa or what not and adding the spices, sauces, fixin's etc as I ate a portion. That way I didn't end up ruining a big batch of food. Anyway, rice keeps better, doesn't get so soggy, if it is by itself without lots of sauces etc added. That's probably why Chinese restaraunts put rice in separate little containers for takeout.

I am not the most energetic cook though. I do big batches for the simple reason that it saves time and money and that's not bad. Plus if you freeze a different meal version every weekend for a few weeks running you can have a nice variety to choose from if you are into the whole variety in foods thing. Ahhh, I guess that's alright.

About the sugar fix. You can search for microwave peanut brittle recipes on line and find oodles of them. But brittles don't have to be just peanuts. You can add seeds, fruit, coconut etc to a brittle recipe. Maybe some of that popped amaranth? Use your imagination and have fun. I use Baker's Secret unsweetened baking chocolate squares for making candy. So far I have been ok with it. It is soy free and dairy free, actually 100% cacao too. There is a brand sold online called Tazo, but I haven't tried it yet. It is also soy free/dairy free. Probably if you search this site for snacks or bars you will find some good recipees for various kinds. I don't actually make candy very often but sometimes in the winter or cold weather it is fun to do. If you make a nuker brittle use a deep glass dish, preferably clear glass, and keep an eye on it. It is easy for it to boil over the dish top and also to burn the sugar if nuked 'til it glows. Soak the used glass dish for a few minutes in plain water and the leftover sugar/candy will clean right off. Somewhere on here is a recipe for pumpkin bars I haven't tried also.

1

Share this post


Link to post
Share on other sites

We are two of a kind T.H. I have problems with all those things that bother you. I wash my quinoa carefully before eating it. For chocolate, I take raw cocoa nibs, wash them carefully, roast, and grind. That is better than nothing. Right now I am searching for a sugar. Have you found one?

1

Share this post


Link to post
Share on other sites

I wonder if this is why I got to be this old (46) before REALLY having problems. I remember telling one doctor that my idea of convenience foods was frozen vegetables. We've always eaten at home, and FAIRLY simply. I can't do the "cook for the week" thing because if it's not fresh, I can't eat it. Can't stand leftovers unless I turn them into something else, which is why I'm known as "The Leftover Queen". And if it's not something I want to eat, forget it. Never been a "mindless" eater or just poke stuff in my face. I've always rather gone hungry than not enjoy what's in front of me. *shrug*. Not trying to be smug, but, I ENJOY food. We've just never been "pre-packaged" kind of folks so it was a LOT easier.

We had grilled wings, Italian stuffed zucchini and bacon green bean bundles tonight. All naturally gluten-free (well, I do replace the croutons in the zucchini with herb seasoned Chex), tasty as hell, and on the table in less than an hour.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,695
    • Total Posts
      921,779
  • Topics

  • Posts

    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,701
    • Most Online
      3,093

    Newest Member
    Dtroutmann
    Joined