Just Ditched The Gfd

[WestyPDX]

Boy, I really need to get this off my chest, it's a big step, but I've gone and done it, I found enough things between the fridge and the last bag of gluten foods I hadn't gotten rid of yet to make the plate of chicken chow mein I'm wolfing down now as I type. After spending the whole six weeks while on the GFD in physical and mental distress, plus most of this weekend searching the web for answers, I've settled on a few things:

1) I'm probably going through heavy gluten withdrawals on the GFD, and need to do a tapered diet instead of going cold turkey. I'm just not one of those folks who feels great after 2 weeks on the diet;

2) I've been living on baked custard for breakfast, and cheese in almost every other meal, while dairy foods look like they need to be avoided during the healing process;

3) If I don't stop this nonsense right now and do it right, this 3rd attempt at the GFD in ten years will be my last, and I'll simply turn my back on it forever despite the risks;

4) Before I do the GFD again in full, I need to do a lot better preparation, like nailing down a solid list of meals I can take into the office for lunch and snacks, and stocking the fridge and pantry correctly with staple items from a list of meal plans, complete with shopping lists so I know what fresh ingredients to buy on a grab-and-go basis. I find it impossible to do it in my current condition;

5) There have to be things I can eat which are naturally gluten-free, without resorting to wheat replicas--I can live without the bread, flour and pasta fakery;

6) There are probably better and more complete resources here on just this website about how to do the GFD than in the combined knowledge of all the staff at my GI doctor's office (basically a huge colonoscopy factory);

7) Probably the toughest of all, I have to forgive myself and everyone else involved in this that has seen my holidays ruined this year, caused my work to go down the tubes at a crucial time, alienated friends and colleagues, and left me a mere shell of my former self in such a short time.

But this isn't a 'woe is me' kind of post, I'm actually feeling better about it all. I was basically scared into going gluten-free immediately by my doctor from the possibility that what the radiologist saw on a CT scan could have been cancer. I'm going to my doctor's appointment on Tuesday and leveling with him. Since they haven't found any cancer, and he's put me on Entocort to reduce the inflammation, I owe it to myself and those who depend upon me to do this right, not half-witted. It's not enough to start this diet with him telling me there are lots of "yummy things out there since you last tried this", and sending me off to a dietician just to get some pamphlets. Who knows, he may dismiss me as a patient, or he can be supportive. His choice.

The only physical manifestation of celiac I had to cope with before was DH, but that was controlled successfully with Dapsone. Since going gluten-free, the physical maladies are too numerous to list, including a DH outbreak even though I'm still on Dapsone! I understand it's important to do the diet to repair the villi and shrink the inflammation in my small intestines, so I'm willing to work something out.

I really understanding why so many have posted in this forum with their tales of grief over the GFD, and my heart breaks at every story I read. This shouldn't be this difficult. I'm just a single guy with a cat, I can only imagine what it must be like to care for a sick child, or have an entire family's budget and lifestyle disrupted like this.

My hope is that something positive comes from my decision to ditch the GFD for now, so I can cope with it better on my next attempt. I'm giving myself until February 1st to prepare. Almost anything has to be better than what's happened so far. I just hope I'm doing this in time to salvage the damage to my life the GFD has done.

I know I'm new here and don't know a soul, and you don't know me either. Perhaps in the coming weeks as I make my way through the gluten-free minefield, I can ask questions, get help with the above, and share what I'm learning and doing. There sure is a lot of valuable information here, and you all seem like a nice enough lot from what I've read so far.

First step: I forgive myself for all the mistakes I've made, and what my body is doing to itself that's beyond my control.

Thanks for listening.

[KristaleeJane]

I am sorry to hear you are having such a hard time with the GFD. I think that not sticking to the diet is the worst thing you can do for yourself. Once I found out I had celiac I did not consider it a choice to go gluten-free but something that I had to do to survive and be healthy.

I am grateful that the GFD is available to Celiac sufferers and that you should stick to the diet no matter what.

Good luck

[neesee]

Are you positively diagnosed through a small bowel biopsy and or skin biopsy? If so, then you can't just decide the gluten-free diet isn't for you at this moment.

The gluten-free diet saved my life and slowly restored my health. It takes time to work. In all honesty, I would have to say it took a good three years for me to be better. I still have my problems, but I function a whole lot better.

I was too sick to consider whether I had withdrawls or not. I don't think I did. I had major malnutrition. That causes a host of symptoms all on it's own.

Don't give up!! You can't afford to!

neesee

[nikki-uk]

Sounds to me like you know what you got to do

Would you believe me when I say it becomes second nature to eat gluten-free without any longing for forbidden food?? ('cos there's plenty you CAN!)

You can do this!!!!

[WestyPDX]

Are you positively diagnosed through a small bowel biopsy and or skin biopsy?

Yep, been diagnosed three times, once in 1997, once in 2002, and recently again in November 2008. The first two times my GI doc said the damage was mild, and it was even difficult for her to find a place to biopsy the second time around. When I was worse off on the GFD both times, it didn't make any difference to her if I did the GFD or not, so I dropped it.

This time, a new GI doc did a follow-up CT scan and the TTG test. The CT showed the lining of my jejunum was 15x the thickness it should be, and my TTG level is 134, along with significant villi damage. That along with DH would confirm that I have celiac disease.

If so, then you can't just decide the gluten-free diet isn't for you at this moment.

But I can decide that the results so far mean it wasn't approached properly, so I can take a deep breath, give myself a few weeks to plan it out right, and do it again. If I just keep going along as I am, I risk damaging my health, losing my job, and trashing my life even more than it already has been. There aren't any positives in that outcome that I can find. After having celiac for all these years, I doubt if 3 or 4 more weeks eating gluten again is going to kill me.

Sounds to me like you know what you got to do

Yep, I think so too. Thanks for the support.

[Jestgar]

Good for you for facing your challenges head on!

May I suggest that you be as gluten-free as you can while preparing to do it full on?

Make sure everything you buy from now on is gluten-free.

Most people eat the same things over and over. Figure out what you (used to?) eat most and try to design a gluten-free alternative.

If you need grab-n-go snacks, get lara bars, or mrs may's or something similar.

[GlutenGalAZ]

I went partial gluten free in '07 when we first moved and I learned about gluten intolerance. It was very hard with the move to be on it full so I did it partial with some major slip ups (real pizza).

I bought some kid cookbooks (b/c they are easier to start out with) and have been making gluten free pancakes, muffins, cinnamon rolls etc for breakfast (I make these on the weekends and freeze what I can).

I don't think I could have gone cold turkey so I do agree with you there.... I think though during the year I started to slowing feel better and realize that I just needed to cut out ALL gluten and one day it hit me and I went completely gluten free. It is hard at times b/c you are hungry and just want something easy/quick.

If you like to cook or if you don't you should really get into the hang of it. I like to make things on the weekend and freeze them.

Here are a two books that I really like and the recipes are really easy:

*Incredible Edible Gluten-Free Food For Kids by Sheri L. Sanderson

*The Gluten Free Kitchen by Roben Ryberg

** Roben Ryberg came out with a second book last year I just got it but haven't tried it yet

You Won't Believe It's Gluten Free

Rybergs Kitchen one is really simple you don't need many ingredients.

I would stick with things that don't have gluten in it while you are figuring things out and see how things go (if you feel up to it):

Chicken, Tuna (can do canned), Mission Corn Tortillas and Chips, gluten free pasta, Dinty Moore Beef Stew, Hormel has a lot and has deli meat (Natural Choice), Frozen or Fresh veggies.....etc

I have found that there is another plus to the gluten free diet....My husband (well he eats gluten) and I do not eat take out that often and we eat things that we make instead of frozen things so it has helped a lot with getting us to eat healthier so that is a major plus.

I wish you the best of luck with figuring out things and what you wanna do. GOOD LUCK!!

[WestyPDX]

Good for you for facing your challenges head on!

May I suggest that you be as gluten-free as you can while preparing to do it full on?

Make sure everything you buy from now on is gluten-free.

Thanks! And yep, being as gluten-free as possible is my intention while I get this sorted out. I've already sourced wheat-free tamari, for example, so I don't intend to go out tomorrow to buy a bottle of regular soy sauce just for the next 3 weeks. But I won't be afraid if I go for some Pad Thai at lunch and what they made before in the wok might have had regular soy sauce in it, at least my exposure will be small, and I'll be eating rice noodles instead of wheat.

Over the past 6 weeks my diet basically boiled down to baked custard, salad, then either Stagg's chili over rice or homemade nachos. Plus I ate a lot, and I mean a LOT of Waldorf Salad--apples, sliced grapes, walnuts, honey and French Vanilla yogurt--a quart of it at once sometimes. If I ran out of any of those on hand, I freaked. I bought a dozen apples and yogurts at a time. But I had so little energy or was feeling so sick, I let things I bought for some variety just go bad in the fridge. Can't tell you how many chicken breasts, pork chops and ground beef just rotted away in their packages because I was either too tired or depressed to cook, or was out of an essential ingredient for dinner, and couldn't be bothered to go to the store. So I just boiled some rice and dumped some chili over it again. That has to stop. Right now. Right this very second.

If you like to cook or if you don't you should really get into the hang of it. I like to make things on the weekend and freeze them.

I used to like to cook, but when the GFD put me into such a state of depression, all the motivation I had flew out the window. Thanks for the suggestions about the kids books. Perhaps that's just what I need.

[neesee]

Yep, been diagnosed three times, once in 1997, once in 2002, and recently again in November 2008. The first two times my GI doc said the damage was mild, and it was even difficult for her to find a place to biopsy the second time around. When I was worse off on the GFD both times, it didn't make any difference to her if I did the GFD or not, so I dropped it.

This time, a new GI doc did a follow-up CT scan and the TTG test. The CT showed the lining of my jejunum was 15x the thickness it should be, and my TTG level is 134, along with significant villi damage. That along with DH would confirm that I have celiac disease.

But I can decide that the results so far mean it wasn't approached properly, so I can take a deep breath, give myself a few weeks to plan it out right, and do it again. If I just keep going along as I am, I risk damaging my health, losing my job, and trashing my life even more than it already has been. There aren't any positives in that outcome that I can find. After having celiac for all these years, I doubt if 3 or 4 more weeks eating gluten again is going to kill me.

Yep, I think so too. Thanks for the support.

It sounds to me like you're sicker and more rundown the you want to to admit ( so like a guy). Can you afford a sick leave? You do need to take some time and get your head on straight and rest!

I swear, the diet isn't that bad. I should know, I've been gluten-free for 21 years! As far as how your diagnosis was approached, I don't think anyone is prepared to hear they have a major health problem. You can't plan for it! Oh wait, I'll have cancer next year june 25 2010 sounds good. I'll be ready for it then. You have celiac now and you have to work with it now.

Maybe your Dr could prescribe a medication to help soothe your stress. I took Xanax for a solid year. It helped me through the bad days.

There is a lot of great diet info here on this website. There are lot of really kind helpful people here as well. We are all pulling for you. You can do this.

neesee

[happygirl]

Check out the companies in these links: https://www.celiac.com/gluten-free/index.ph...c=54225&hl=

It will make shopping much easier when you know how to read labels and which companies will make label reading easier.

[WestyPDX]

It sounds to me like you're sicker and more rundown the you want to to admit ( so like a guy). Can you afford a sick leave? You do need to take some time and get your head on straight and rest!

I swear, the diet isn't that bad. I should know, I've been gluten-free for 21 years!

I might be, that's why I went looking last night for people who are worse off on the GFD, which lead me to this forum. The article I read about gluten withdrawals being as hard as opiate withdrawals really hit home with me. No doctor will take a patient off an opiate cold turkey--that would be considered malpractice, but they do it with gluten all the time.

The office has been very generous and understanding, thankfully, but there's only so far one can take it. It's the end of the year, and I have responsibilities others are depending upon me for. I can take some time off next month. I've a few weeks of vacation in the bank.

Congrats on doing this for 21 years! There are enough things out there which are naturally gluten-free, I'm sure I can make this work as long as I'm sensible about it. Suddenly dropping gluten the weekend before Thanksgiving without any support or preparation really wasn't the best way to approach this, and I've paid the price for it. I've been saturating myself with dairy the whole time, not knowing that should have been avoided as well. Now I know, and can plan for eating something else.

[lbd]

I think dairy might be the biggest factor here. It certainly was the clincher for me. Once I cut out most dairy (milk, yogurt, fresh cheeses) things got so much better. I don't seem to have problems with goat cheeses or hard cheeses, though I try to limit the amounts. I drink almond milk - it is the best and I actually prefer it now.

Maybe it would help if you gave us a list of your favorite foods and we gave you ideas for great-tasting substitutes. For example, I made pizza the other night using corn tortillas (these were the sprouted kind), covered them with sauce (I used salsa because I didn't have pizza sauce), sprinkled on some cheese, and layered with sausage and sprinkled on a little oregano. Placed in the oven for 15 minutes at 450. God, they were good! My husband had California Pizza and was eyeing up mine the whole time.

This morning I made banana muffins from a mix of misc. gluten-free flours I had put together from small amounts leftover. I think there was teff, sorghum, rice, almond, flax, and who knows what else in there! I just followed the original recipe in Joy of Cooking to a T, added in 1 tsp of xanthum gum, and added raisins and nuts. They turned out great! My husband thought they were non-gluten-free. I have found that if you follow regular recipes, they often turn out well, especially with Pamela's baking mix or a mix of flours like I had.

I eat so much better now. And I am gluten sensitive, not celiac, so please rethink eating gluten-free foods at all. You are doing so much damage. I guess it is hard at first, but really, I love the foods I make now. Also, I tried Glutino bagels (sesame) again - I was not happy with them the first time - and I love them now. They must have changed the formula. Van's gluten-free waffles are good, Tinkyada pasta, Glutino crackers and pretzels, regular Utz chips are as well, but really I am finding that I prefer real foods over substitutes so much more now.

Best of luck,

Laurie

[WestyPDX]

Maybe it would help if you gave us a list of your favorite foods and we gave you ideas for great-tasting substitutes.

Thanks, I will do that! I've just gotten off the phone with the dietician I've been trying to track down for the past few weeks, and she asked for something similar. What I'll probably do is share what I jot down in her pre-appointment questionnaire, and go from there.

Was interesting, when I told the dietician that I'd dropped the diet and why, but I was willing to work on a plan for doing it properly, she seemed okay with that, and said that most of her patients did a tapering, eliminating bread first, then pasta, etc.--very few go cold turkey, so it appears I've made the right decision.

[Hummingbird4]

Get your ducks in a row, and then start the diet (for good this time).

When I was first diagnosed, it was 3 days before a 2-week vacation to Europe. I told my doctor that I couldn't/wouldn't go gluten-free immediately, and he told me to go and enjoy my vacation (I was asymptomatic at the time) and start gluten-free when I got back.

So I got back from vacation, took another 2 weeks to do some serious research and planning, and to "decontaminate" my kitchen. I enjoyed my last real pizza, my last real donut, etc. and then started 100% gluten-free on a predetermined date. That was 5 months ago and I haven't even considered cheating for a moment. I still feel sorry for myself, but this is the way it has to be. Until they come up with a cure.

Hey, I just noticed you're from Portland. Me, too!

[missy'smom]

If I find something I like and can make easily, I find other ways to serve it or flavor it or repurpose it. For example, I have three ways to season a roasted chicken and have a choc. cake mix that we like so I find other ways to serve it-frosted, with fruit and whipped cream or a sauce or with other things mixed in the batter. With the chicken I use leftovers in fried rice, pasta dishes, soups etc. I find simple ways to build in variety. Taco fixings can be served as tacos one day or week and taco salad another. One week can be ground beef filling and another can be fish tacos. Hot dogs or franks are cooked and served with mustard, sauerkraut, boiled veg etc. for a "german" meal or panfried with potatoes for a simple "hash" for dinner or breakfast. I boil double batches of potatoes and serve as boiled potatoes with butter one meal, leftovers are panfried the next day with ham or hot dogs the next or made into potato salad. Hope that gives you some ideas. I keep an ongoing notepad of meal ideas/plans on my laptop so that I don't end up in the kitchen staring at the pantry and fridge and get that "there's nothing to eat" blank stare.

[lovegrov]

"The only physical manifestation of celiac I had to cope with before was DH, but that was controlled successfully with Dapsone."

This is not a lecture but more of a warning. DH was my only symptom for more than 20 years. And then I was suddenly so sick I ended up in the hospital for 11 days and missed 10 weeks of work. It took 10 months to return to normal.

richard

[WW340]

If I find something I like and can make easily, I find other ways to serve it or flavor it or repurpose it. For example, I have three ways to season a roasted chicken and have a choc. cake mix that we like so I find other ways to serve it-frosted, with fruit and whipped cream or a sauce or with other things mixed in the batter. With the chicken I use leftovers in fried rice, pasta dishes, soups etc. I find simple ways to build in variety. Taco fixings can be served as tacos one day or week and taco salad another. One week can be ground beef filling and another can be fish tacos. Hot dogs or franks are cooked and served with mustard, sauerkraut, boiled veg etc. for a "german" meal or panfried with potatoes for a simple "hash" for dinner or breakfast. I boil double batches of potatoes and serve as boiled potatoes with butter one meal, leftovers are panfried the next day with ham or hot dogs the next or made into potato salad. Hope that gives you some ideas. I keep an ongoing notepad of meal ideas/plans on my laptop so that I don't end up in the kitchen staring at the pantry and fridge and get that "there's nothing to eat" blank stare.

These are all good ideas. I do some very similar things. I keep a list of meals I like on the fridge. If I am going to cook, I cook extra so I don't have to cook everynight. I freeze the extra in containers I can use for travel or to take to work.

Learn to bake a chicken, it is very easy to do. I cook a whole chicken once a week. I put it in a baking dish with 1/3 can of swanson's chicken broth, rub a little oil on the chicken or spray with oil, salt and pepper all over. I quarter an onion and spread it around the chicken. Bake at 350 for about 1 1/2 hours or until golden brown and the leg moves easily. Now that I have a whole chicken, I have enough food for most of my week.

From it I make my first meal of chicken with a side of rice or potatoes and veggie. Sometimes I will cook the potatoes 1/4'd and some carrots right in with the chicken. I cool the left overs and store in the fridge. The next night I just add a different side dish and veggies. I make some chicken salad by cutting some up and adding mayo and relish, or just make a sandwich with sliced chicken. The third day, I throw the chicken in a pot with the remaining chicken broth, chicken juices and onion and boil. I remove the bones and add left over rice, or potatoes and carrots and have soup, or I add rice noodles.

I also eat a lot of eggs. If you can tolerate eggs, boil some up for the week. They are quite portable boiled. Learn to make simple omlets - it is really easy. I found that eggs really helped control the awful hunger I got when I first went gluten free. I felt like I was starving all the time until I started eating a lot of eggs. Eggs are also quick and easy. Fatigue has been a long time problem for me, so I have learned to cook very simply, but I eat very well.

Get some frozen gluten-free pizza crusts or make some and keep your favorite toppings around for a quick pizza. I keep cheese, sausage and pepperoni in my freezer at all times.

I have some instant microwavable gluten free substitutes for bread and cake, but I don't eat a lot of those kinds of items. I keep them around to satisfy cravings. I did use them more initially while trying to adjust to the diet.

Good luck, it is really not so bad after you get the hang of everything. The first few months feel rather overwhelming, but once you figure out what you like and what you can eat, it becomes second nature after a while.

[emcmaster]

I don't think tough love is what you need. Most of us mourned the loss of regular food before (and after!) we went gluten-free.

Eating gluten-free doesn't have to be super inconvenient. I don't like to cook much (thank goodness I have a husband who plays around in the kitchen once or twice a week) so I eat quick foods like omelets, sandwiches on gluten-free bread, salads, frozen gluten-free mac n cheese (Amy's brand), yogurt with berries, etc. I also grill a bunch of chicken breasts at once and eat them over the next week (you could do this with really any meat).

I think those of you that are asymptomatic have it the worst. A good portion of the reason I stick to a gluten-free diet is fear of getting sick. Give it a try, though - it's really not as horrible as it seems and it gets easier every day. Most of us that have been gluten-free for a while find it totally second nature.

[WestyPDX]

Most of us mourned the loss of regular food before (and after!) we went gluten-free ...

Give it a try, though - it's really not as horrible as it seems and it gets easier every day.

That's a funny thing about this, I've not once mourned the loss of being able to eat anything specific. I don't crave pizza, or wish I could have my favorite bagel again every morning, etc. This is something completely different, a withdrawal from gluten in general, that's like withdrawing from heroin. I was feeling worse every day, not better. There's got to be something behind that.

This is the article I read that made what I was going through come alive:

Open Original Shared Link

So I have given it a try, literally went gluten-free the very day my doctor said "this could be cancer." I just went about this too fast, unprepared, and having the withdrawals complicate the matter lead to my decision. There's no unwillingness to try this again. I've even set a date for it, February 1st. But dang, I'm lovin' having been glutened. It was a hard, hard decision to make to go off the diet, and I tore myself up with guilt over it before I took the plunge, although I'm feeling better already, only 8 hours afterwards.

[WestyPDX]

What a remarkable night I just had. Ever since the third or fourth night of being on the GFD, I was having night sweats. Every single night without fail. They had been bad enough that I had to change pillows and night clothes, then move to the other side of the bed, since I'd wake up in the middle of the night lying there in a pool of sweat. Last night, nothing. Didn't even sweat on the pillow, which is where it usually starts. I slept all the way through the night as well.

I'm going to have to bring that up with the doctor tomorrow if it continues tonight. That's significant. Now let's see if I can make it through a full day at the office. I haven't been able to do that for at least 3 weeks.

Have a great day, everyone.

[Takala]

Yep, been diagnosed three times, once in 1997, once in 2002, and recently again in November 2008. The first two times my GI doc said the damage was mild, and it was even difficult for her to find a place to biopsy the second time around. When I was worse off on the GFD both times, it didn't make any difference to her if I did the GFD or not, so I dropped it.

This time, a new GI doc did a follow-up CT scan and the TTG test. The CT showed the lining of my jejunum was 15x the thickness it should be, and my TTG level is 134, along with significant villi damage. That along with DH would confirm that I have celiac disease.

But I can decide that the results so far mean it wasn't approached properly, so I can take a deep breath, give myself a few weeks to plan it out right, and do it again. If I just keep going along as I am, I risk damaging my health, losing my job, and trashing my life even more than it already has been. There aren't any positives in that outcome that I can find. After having celiac for all these years, I doubt if 3 or 4 more weeks eating gluten again is going to kill me.

Yep, I think so too. Thanks for the support.

_______________________

I'm sorry, but this simply does not make any sense. If you are positively diagnosed by a doctor (multiple times !) as being celiac, then the treatment is to go on a gluten free diet and stay on it.

I am curious if you have other problems such an unwillingness to give up drinking regular beer socially, or something similar.

Something is affecting your ability to make value judgements. This is like reading about somebody deciding to go off insulin and start eating regular cake three times a day for each meal, because they can't handle being diabetic but they like the sugar rush, and they want to plan for someday being better.

Having intestinal damage means in turn you cannot absorb micro nutrients properly and this affects your whole metabolism and mental well being and leads to weird cravings. If you take in too much fruit sugar and not enough magnesium to balance it you'll screw up your entire body in addition to your liver. Skip the calcium and your kidneys and your bone structure wrecks, skip the vitamin D and you're inflamed, skip the B complex vitamins and you have brain mush. Keep letting yourself get accidently cross contaminated and you'll have fits of bad temper.

You need to cut back on the sugars and the fruits and up the vegetables, good fats such as olive and coconut oil, avocados, nuts, beans if you can tolerate them, and the meat proteins, and for pity's sake GET ON A GLUTEN FREE B VITAMIN COMPLEX now and some gluten free magnesium (and calcium because you're going to cut back dairy) because you're just displaying absolutely classic symptoms of mineral imbalance. Eating gluten is not going to fix this. This is your liver on fructose, and it's not pretty. No liver, no health.

Instead of dairy milk you will want to get a milk substitute, such as a nut milk, or a hemp milk, and you will want to avoid the Dream brands because they use Barley (wheat family) in the processing and some people are very sensitive to it. Rice milk is tasty but then again, it can really spike the blood sugar so be careful. With the milk substitutes you can still bake custards if you insist, use it for cooking, drinking in coffee or tea, or pour it on gluten free cereal.

Cooking. Leftover are your friends. When you cook, just cook the whole package of whatever and then refrigerate or freeze the leftovers. 4 burgers or chops in one pan = 4 meals.

The other thing I would suggest is that you cut back on soy products because they may in turn depress the thyroid.

This is an auto immune condition in that you must allow that you will be spending more time than the average person doing "maintenance" activities such as caring for yourself, and you might have to ration your energy supply to prioritize taking care of yourself first so that you function well enough to do other things.

[WestyPDX]

I am curious if you have other problems such an unwillingness to give up drinking regular beer socially, or something similar.

Fair question, but nope, I don't really drink that much at all, perhaps one or two drinks or a glass of wine a month. But put a Campari with grapefruit juice in front of me and I'll take two!

The only other things that have been a problem have been Synthroid and SSRIs. I had a terrible time with thyroid from the first hour I took a tablet, and my TSH has been all over the map (like it could be 1 on Monday, then 12 on Friday without a change in dose). They found that I have "empty sella syndrome" which means my pituitary gland is of microscopic size and there's nothing but benign fluid in the cavity where the rest of a normal gland should be. Early on in my thyroid treatment, my docs kept pushing Zoloft, Paxil and Prozac, but they triggered bipolar symptoms. Once they ditched those and gave me Dexedrine instead, those went away and never returned. I was monitored for four years by the same psychiatrist, and that was his opinion, not mine. For some reason, thyroid gives me depressive symptoms. My first endocrinologist literally begged me to take an anti-depressant, the change was so remarkable as my dose went up.

Something is affecting your ability to make value judgements. This is like reading about somebody deciding to go off insulin and start eating regular cake three times a day for each meal, because they can't handle being diabetic but they like the sugar rush, and they want to plan for someday being better.

How did you get that out of "this wasn't done right, time for a do-over"? I'm beginning to believe that Must. Go. Gluten. Free. Cold. Turkey. is so ingrained that it doesn't allow for admitting mistakes and corrective action. That could actually lead to some dangerous diet regimes. In the Opiate Withdrawal link I posted above, the doctor who wrote the article concludes by saying: "The take-home appears simple: if these symptoms occur, do go more slowly on the Gluten-free Casein-free diet, respect the withdrawal process and support other nutritional and physiologic activities." I think the doctor's advice is sound. I have the symptoms of gluten withdrawal that he describes.

You need to cut back on the sugars and the fruits and up the vegetables, good fats such as olive and coconut oil, avocados, nuts, beans if you can tolerate them, and the meat proteins, and for pity's sake GET ON A GLUTEN FREE B VITAMIN COMPLEX now and some gluten free magnesium (and calcium because you're going to cut back dairy) because you're just displaying absolutely classic symptoms of mineral imbalance. Eating gluten is not going to fix this. This is your liver on fructose, and it's not pretty. No liver, no health.

Interesting piece of advice! Sounds like a classic need for a "this wasn't done right, time for a do-over" to me. I'll take a look at mineral imbalances, and I've been eating gobs of beans on my nachos. When the GI doc did his latest set of blood work, he said I was slightly anemic. He didn't suggest I take an iron or B vitamin supplement beyond the B-12 I take already though, he felt I would get enough over time as I'm better able to absorb nutrients. I see him tomorrow, I'll bring it up again.

Instead of dairy milk you will want to get a milk substitute

Never been a big milk drinker, and only did custard in the morning since it was an easy way to get some protein in from the eggs while I was looking for something else I could eat for breakfast. I have no investment in it otherwise.

The other thing I would suggest is that you cut back on soy products because they may in turn depress the thyroid.

No soy to cut back on, except perhaps a tablespoon of soy sauce in total per week maximum if that, so no action needed there. Last time I had tofu was when a few small cubes of it was in some miso soup a couple of years ago.

This is an auto immune condition in that you must allow that you will be spending more time than the average person doing "maintenance" activities such as caring for yourself, and you might have to ration your energy supply to prioritize taking care of yourself first so that you function well enough to do other things.

Agreed! Classic need for a "take a deep breath, then step back in order to see the forest for the trees".

Thanks for your input. I'm off to work now for the day. Have a good one.

[Nancym]

I have to imagine that guys have a much harder time dealing with this because they're not used to thinking about or preparing meals (many guys anyway). For some reason there seems to be a stigma that being concerned with food is unmanly.

Anyway, I think if you can ditch that and learn to cook you'll have a MUCH easier time dealing. Plus, trust me on this, girls LOVE guys that are good in the kitchen. I have a thing for male TV chefs... Ming, Alton Brown, Chef Ramsey. Their sex appeal is definitely related not just to their studly good looks, but their ability to perform well in the kitchen.

I suggest you watch "Good Eats" by Alton Brown. Yes, he uses gluten in some stuff, but he explains all the basics in a fun, scientific way that I think would appeal to men (and women). You almost feel like you're watching a chemistry lab scientist the way he goes. When you know how to cook, you're not at the mercy of anyone else for a meal and there's really no reason you can't take control of this.

[JNBunnie1]

The only other things that have been a problem have been Synthroid and SSRIs. I had a terrible time with thyroid from the first hour I took a tablet, and my TSH has been all over the map (like it could be 1 on Monday, then 12 on Friday without a change in dose). They found that I have "empty sella syndrome" which means my pituitary gland is of microscopic size and there's nothing but benign fluid in the cavity where the rest of a normal gland should be. Early on in my thyroid treatment, my docs kept pushing Zoloft, Paxil and Prozac, but they triggered bipolar symptoms. Once they ditched those and gave me Dexedrine instead, those went away and never returned. I was monitored for four years by the same psychiatrist, and that was his opinion, not mine. For some reason, thyroid gives me depressive symptoms. My first endocrinologist literally begged me to take an anti-depressant, the change was so remarkable as my dose went up.

Interesting piece of advice! Sounds like a classic need for a "this wasn't done right, time for a do-over" to me. I'll take a look at mineral imbalances, and I've been eating gobs of beans on my nachos. When the GI doc did his latest set of blood work, he said I was slightly anemic. He didn't suggest I take an iron or B vitamin supplement beyond the B-12 I take already though, he felt I would get enough over time as I'm better able to absorb nutrients. I see him tomorrow, I'll bring it up again.

I have a few thoughts.

Keep in mind that as your body's villi begin to heal, your absorption of medications will change. You need to be ABUNDANTLY aware of how each medication you take affects you, and be willing to start taking less and less as you heal. You may find that your thyroid numbers start to even out as you finish healing down the road.

Also, most GI doctors don't have a real understanding of what sort of vitamins and minerals you need, and how much. Since you need to heal now, and a number of your symptoms have been mental and emotional, doesn't it make sense that maybe you'd need more of a vitamin that affects those symptoms than the standard person? The B spectrum is recommended (by those of us who are knowledgable) for every new Celiac because standards used for non-Celiacs don't apply to us. You need more than a normal person because you're damaged more than a normal person.

And as another poster mentioned, it really IS harder when you don't have prohibitive illness facing you at every turn. I personally was so very sick when I went gluten-free that I ate rice pasta with meat sauce for two meals a day for three months straight because I was too tired to think of anything else. I had gluten-free toast with pb for breakfasts, eggs on the weekends. Now I can't have peanuts because I ate too much at the beginning, but anyway. Getting sicker OFF gluten is nothing like the kind of motivation that I had! I think you're doing a great job by knowing yourself and making a plan you know will work for you, rather than scrapping the whole thing.

If you need to plan ahead to approach this logistically, you do whatever you need to do. Be prepared to WORK for it. Your night sweats will be unpleasant-keep fresh jammies by the bed and try having some chamomile before bed for calming; you might explore melatonin. Don't let yourself go without easy food to grab when you're too tired to cook. Buy Larabars. MAke your own trailmix by the pound. Store your meat in baggies in the freezer so that when you DO feel like cooking you can thaw it in a pot of hot water quickly (works best with ground meat), instead of having it go bad in the fridge all the time. Buy cases of rice pasta at the store and ask for a discount. Buy frozen veggies by the armload, don't force yourself to buy fresh and have to peel and chop. Let us know whatever else we can do to help you! I also have a recipe for gluten-free df bread, pm me for if you like, boy it's yummy. Speaking of which: Breadmakers-They're not just for Grandma anymore.

[626Belle]

No soy to cut back on, except perhaps a tablespoon of soy sauce in total per week maximum if that, so no action needed there. Last time I had tofu was when a few small cubes of it was in some miso soup a couple of years ago.

I'm hoping you've checked the ingredients of your soy sauce. The majority of the most popular brands list wheat as their first or second ingredient. I've switched to La Choy (I think I'm remembering that correctly) because they don't list any wheat ingredients and I've experimented and found that it doesn't bother me.