I Give Up On Eating.

[Guest thatchickali]

First of all, I've been gluten free for 6 weeks and I feel worse than I did before I got diagnosed.

My daily diet goes like this:

Envirokids Cereal for breakfast (gorilla munch, frosted flakes, or both)

Apple

Banana

Glutino Pretzels

Corn tortilla with Hormel (Gluten Free) chicken

White Cran Strawberry Juice

Water

Occaisionally:

Midel Cookies

Envirokids Cookies

Hormel Gluten Free Turkey with mustard

Rice (with swansen chicken broth)

Gluten Free Pasta

Every single day I get horrible dizzy spells, I've been to every doctor and had every test except and Ear Nose and Throat doc, which I will try next. But the dizzy spells are accompanied by nausea, cramping, depression, anxiety, brain fog, everything that points out a glutening.

I live with room mates, but the only thing I use the kitchen for is the stove. If I use it, I prepare what I'm going to cook in my room, then bring the pot out with the top on it.

Gluten Free makeup, Gluten Free Shampoo and soap, Gluten Free dog food.

This gluten free diet has caused me more discomfort than I had before it.

I don't know what to eat tomorrow but I dont want to at all. I've had enough.

[Morrisun]

Don't give up yet! I know at first it can be so disheartening. Honestly though, it took me about 3 months until I saw a real improvement, and then it just got better from there.

[Fiddle-Faddle]

First of all: {{{{HUGS}}}}

Second of all--YOU CAN DO THIS!!!

Second-and-a-half-of-all (late edit): Doesn't Swanson chicken broth contain wheat starch? Or is that College Inn?

Third: your diet seems awfully heavy on carbs and starches and awfully low on vegies, fruit, and protein. Could a systemic yeast infection be a possibility? That might give you cravings for carbs, especially sugar. Or is diabetes a possibility?

May I suggest a menu? Maybe everyone who reads this can post one day's worth of meal suggestions!

How about:

Breakfast: 1 or 2 eggs, fried, scrambled, or boiled.

Snack: banana or apple.

Lunch: huge salad (mixed greens, chopped turkey breast, chopped red pepper, shredded carrots, chopped green onions, sliced cucumber, chopped apple, whatever else you can think of). Dressing: olive oil, fresh squeezed lemon juice, garlic powder, onion powder, salt, pepper)

Snack: slice of turkey rolled up with soy cream cheese and cranberry sauce.

Dinner: Baked potato, baked sweet potato, or rice (minute rice is fine; I make 6 cups of rice at a time in a rice cooker, but I just use water, not chicken broth, as canned chicken broth has a LOT of salt),

grilled or broiled (on a piece of foil sprayed with Pam if you have gluteny room-mates) fish, meat, or chicken,

steamed vegies (broccoli is good) or fresh carrots and red peppers with hummous dip

Snack: fresh strawberries or other fresh fruit.

You might need to avoid dairy for now until your gut heals. And if diabetes is the issue, then this menu is probably too high-carb.

I do agree that continuing dizziness is something you should look into and consult an MD about. Are you on any meds for anything else that might cause dizziness? Antihistimines, maybe?

[Yellow Rose]

First of all, I've been gluten free for 6 weeks and I feel worse than I did before I got diagnosed.

My daily diet goes like this:

Envirokids Cereal for breakfast (gorilla munch, frosted flakes, or both)

Apple

Banana

Glutino Pretzels

Corn tortilla with Hormel (Gluten Free) chicken

White Cran Strawberry Juice

Water

Occaisionally:

Midel Cookies

Envirokids Cookies

Hormel Gluten Free Turkey with mustard

Rice (with swansen chicken broth)

Gluten Free Pasta

Every single day I get horrible dizzy spells, I've been to every doctor and had every test except and Ear Nose and Throat doc, which I will try next. But the dizzy spells are accompanied by nausea, cramping, depression, anxiety, brain fog, everything that points out a glutening.

I live with room mates, but the only thing I use the kitchen for is the stove. If I use it, I prepare what I'm going to cook in my room, then bring the pot out with the top on it.

Gluten Free makeup, Gluten Free Shampoo and soap, Gluten Free dog food.

This gluten free diet has caused me more discomfort than I had before it.

I don't know what to eat tomorrow but I dont want to at all. I've had enough.

When I first started this in April I thought only gluten was the culprit. I have since found corn, and rice, and MSG make me very ill. I have had to go to only meat, veggies, and fruit. I was very discouraged but after a couple of weeks at the newer diet I am getting used to it. My cravings for sweets has diminished and I am now craving fruit instead. I was getting dizzy spells also but they seem to have diminshed since I have gotten rid of the packaged food. My pain is also starting to go away. Try going to more pure foods for a couple of weeks and see if that makes a difference.

Yellow Rose

[tarnalberry]

it sounds like blood sugar issues. what you list is very high in carbs, particularly ones that convert to sugar quickly. you may find that balancing your meals - each and every one of them, including snacks - for fat, protein, fiber, and carbs will help reduce or eliminate your symptoms. I find that at least a 25% fat, 25% protein is necessary in most cases.

[gfpaperdoll]

Ali, please look at what Fiddle Faddle has posted as a days sample menu. IMO, you are eating too many grains. You should not be starting your day off with cereal, no matter what the box says tht it is gluten free, it is not good for you, like Fiddle Faddle says eat eggs, fruit, even a tomato with some leftover cooked meat. You will have to cook some meat & veggies for yourself.

some people can eat these gluten-free pretzels & stuff but a lot of them continue to have health issues, the only time to add in the cereal & the pretzels etc is when you are COMPLETELY HEALED and have NO symptoms. If you will just go without all that manufactured stuff you will feel a lot better & you will get over any cravings much quicker. Your body is telling you that what you are eating is not working for you & you are pretending not to listen!!!!

You have to completley rethink how you eat. You cannot just replace old gluten habits with the new gluten-free version, your body is crying for nutrition & you are so damaged that those other grains are hurting you. & they are all cross contaminated with wheat... Have you read any books? like "dangerous Grains" I know you are busy with a life and college & an exciting time in your life, but you have to make time to understand what you need to eat and why and then put a plan in place to see that it happens. You are young, but let me pass on this lesson for you" You are the only person that can take care of you - this will always be true even with a mom, husband, good boss, friends, family, doctors, support groups etc. A lot of times when a woman becomes a mom she forgets this sometimes with disasterous results, but it always goes back to the basic thing, that you have to take care of yourself...

let me know if there is anything that I can do to help. You will have to be super organized & have a plan to get thru this...

[gfpaperdoll]

Sample menu:

Night before:

cook boiled eggs, & either baked or boiled chicken

Slice or shred chicken & put into serving size baggies

Breakfast: scrambled egg or fried egg & canadian bacon, banana, apple, orange, or any fruit,

pack snack: celery stick with a little container of almond butter (get the whole foods brand 365) this is better than PB because peanuts are a legums & can contribute to leaky gut.

An apple or a pear - any different fruit than you had for breakfast - peel apple & put in container if you need to - or eat a peeled apple for breakfast & have a banana with snack - goes good with the almond butter.

Pack Lunch: a tupperware container with torn kale, a little chopped broccoli, a grated carrot, some grape tomatoes, and any other veggie you have in the refrig, a chopped hard boiled egg, & some of the chicken from the night before. Dressing from a little container that you pack - EVOO, splash of Heinz apple cider vinegar, a little honey, any seasoning: salt pepper, mustard, herbs, celery salt etc.

if you can do nuts now you can throw any of those in or some dried cranberries whatever sounds good.

afternoon snack: a piece of canadian bacon, & any fruit

dinner:

Pork chops - save one for salad for next day (keep one bagie of chicken for breakfast next day - freeze baggies of chicken if you have any left from previous day) - school day just pan fry, longer you can cook in the oven on top of rice...

baked sweet potato - if you want something on it - put a little brown sugar

a cooked green veggie, green beans, broccoli, peas, etc. - if steaming green beans - save some for salad for next day.

Breakfast Next Day: omelet with leftover cooked chicken, chopped bell peppers, one piece of fruit

Snack: canadian bacon & apple with almond butter

Lunch: - salad with chopped up pork chop, green beans, grated carrot, tomatoes, any lettuces or cabbage, any other veggie you like. or leave out the carrot & make cooked carrots for dinner.

same dressing.

Snack: Orange or other fruit or veggies with a salsa dip - Tostitoes all natural salsa is good

Dinner: baked chicken or steaks or beef tips that you cooked in the crock pot

rice - cooked with water or V8 juice or HOMEMADE chicken stock

cooked carrots - slice carrots - put into glass bowl with a lid, sprinkle with cinnamon, drizzle on honey, bake in microwave until soft.

[amberleigh]

Awww, I'm so sorry you feel so icky. HUGS!

Honestly, I felt the best right after I found out about my Celiac dx, when I was eating lots of whole foods (fruits, veggies, meats, etc.). Then I started getting more brave with condiments and adding other things back into my diet and now I feel bloated and gassy all the time...ick.

Anyway, as far as your daily menu goes, I think the cereal is okay for breakfast (but maybe the milk is giving you trouble?...I eat mine dry). The fruit is good too. I'd take away the pretzels and cookies for now, until you start feeling better. Also, maybe stick to the straight meats (like fresh or frozen vs. the prepackaged Hormel ones). Oh and I agree about the broth...maybe get rid of it for awhile too. Hope you feel better soon!

[NewB]

Many celiacs have milk issues, too. But your symptoms sound iron/folate related. it has taken me a year to dial in the the sublingual B12, Active Vit B ,6 Folate and Iron needs. We, apparently, lack some enzyeme that absorbs these properly...I had numerous blood test and no one said a word to me about it. Then I started on the b12 (must be shots or under the tongue type)...felt better in a day....

[Guest thatchickali]

First of all, I can't tolerate the proteins like peanut butter and eggs.

Second, I have had blood tests and all my levels were fine, except I was borderline hypoglycemic, so he wanted me to add some more sugars.

As for my dizziness, they told me to "sodium load" because they think it's "neurocardiosyncopy".

I'm seeing an ENT doctor next......to figure out of it's a type of vertigo.

My stomach is so torn up and my anxiety is so high that I can't tolerate anything except the most bland of the bland.

See why I give up on eating?

My whole life I have lived on carbs because veggies, fruits and meats tear up my stomach.

[ravenwoodglass]

First of all, I can't tolerate the proteins like peanut butter and eggs.

Second, I have had blood tests and all my levels were fine, except I was borderline hypoglycemic, so he wanted me to add some more sugars.

As for my dizziness, they told me to "sodium load" because they think it's "neurocardiosyncopy".

I'm seeing an ENT doctor next......to figure out of it's a type of vertigo.

My stomach is so torn up and my anxiety is so high that I can't tolerate anything except the most bland of the bland.

See why I give up on eating?

My whole life I have lived on carbs because veggies, fruits and meats tear up my stomach.

You really need to try and get your diet as pure as you can. I agree with the others you need to cut the processed food for a month or two at least to give your body the time to heal. If all your system can tolerate now is bland food that is what you should give it for now.

Salad greens may not be easily tolerated at this point but you can go for fresh veggies and fruits, plain would be best for your tummy at this point. Cooked peas and green and yellow beans, cooked or fresh green squash, also know as zucchini, yellow squash, potatoes baked or boiled, sweet potatoes etc. Peel your fruits for now, the skins can be hard to digest. Baked apples are great and you can throw some pecans and honey or organic cane sugar in the center before baking for protein and flavor.

Do try the different butters, almond, as was mentioned, is good, my favorite is cashew butter, you can also get sunflowerseed butter although I find I need to add a bit of salt to the salt free brand that I buy. The cashew is real good on slices of peeled apple.

Cinnamon is going to be a good freind, it helps control blood sugar and is beneficial for the digestion. A morning bowl of hot buckwheat cereal, (buckwheat is not wheat or a grain) with a teaspoon of cinnamon is a good high protein, easily digestable morning food. A plain unsweetened applesauce is also good to throw a teaspoon into also, try it without adding sweeteners first you may be surprised to find it does not really need any.

If you are drinking soda or lots of coffee, tea, or juices stop for right now. Switch to water only for a bit with, if you have to have it, only one cup of coffee in the morning.

It is a hard adjustment, and everyone heals at different rates, also you sound like you may have gluten ataxia, those of us who do seem to have a greater sensitivity to CC than those who only have GI symptoms. This can take a bit of time to resolve but for most of us it will.

Stick with the diet and try to go with less processed and you should heal much quicker.

[gfpaperdoll]

Ali, I went thru the same thing but it was many years ago. I also have a friend that this happened to.

Here is what happens. wheat (gluten) is a great mascarader (darn spelling) and when you eat it you have no problems, at that moment, well what it is doing is slowly killing you, so that when you eat another food you get sick, because that food is upsetting your system - unlike wheat which is doing its damage & you think you are okay. At one point I was mostly only eating wheat - I was "allergic" to everything else. This does happen to quite a few people, but now as kids they are usually diagnosed. With you, you did not get diagnosed & continued your love affair with wheat. Gluten is insidious this way, that is why it is so hard to figure out the problem...

You need to go cold turkey (my new fav saying) on the cereal & stuff - your insides cannot handle it.

You can get a bunch of soft foods that you can eat for a week & then add some other foods in.

I GUARANTEE that if you only eat real foods & no grains (&no cookies) you will get better.

So keep the cooked carrots, baked sweet potatoes, applesauce, jello, 100% juice, fruit cups, boiled or baked chicken, rice, and any beans that you can tolerate...plus some fruit & especially if the aples are not organic - peel them...

I will say that you are doing a good job of asking for help when you need it. That is very important and a good part of taking care of yourself. I worry about you in a house with the roomies - I wish you had an advocate that could strike a deal for a gluten free kitchen for you. are there other celiac disease kids at college? Have you looked for them? Asked the counselors/nurse?... have you contacted the Lubbock support group? Maybe there is a family that would take you in for meals etc... You need a gluten-free friend... Now the way I get mine is to just diagnose them!!!!

please ditch the cereal, rice also makes a good breakfast food, you can also cook rice with coconut milk - when done add sugar & cinnamon... eat some applesauce with it...

I know you do not have any extra weight to lose, so try to eat as much as you can of the regular foods. Also, remember that your new limited diet will not be forever but you need it as a healing tool. Can you eat fritoes? Those have almost no CC & have some fat & are readily available.

Also, you did not mention if you are taking a multi vitamin & your B12 - you cannot go without taking a sublingual B12, no matter what the docs say or fail to say & even if your level tested okay. If you are not taking a sublingual B12 - you need to start right away. the reason we are all here to help each other is the doctors do not live with this & they have no idea of what you need to do... although it is good to use them to rule OUT stuff...

[Ursa Major]

If you can't tolerate egg or peanut butter, you may be intolerant to lectins. Lectin foods are: All grains (including corn and rice), eggs, legumes (including soy and peanuts), all dairy, and the nightshade foods (potatoes, tomatoes, pepper, eggplant). Here is a link to find out more on lectins Open Original Shared Link

Also, I had a horrible time with dizziness also. It can be due to adrenal fatigue (in my case it was worse than that, but just adrenal fatigue will cause dizziness as well).

When I started out on the gluten-free diet, I was unable to digest anything raw for six months, even salad greens and fruit. Raw foods would give me horrible stomach cramps, gas and diarrhea. I can, even now after two years, still only tolerate limited amounts of raw food. Which might be because eating foods that are poison for me for 50 years may have caused some irreversible damage. I doubt that you will have that problem. I suggest you cook everything before you eat it. No crunchiness allowed, either.

I suggest a diet of cooked fruit, vegetables and meats (including fish) for now. No cereal or cookies at all. And try cutting out all the lectin foods, to see if it makes a difference. Also, make sure you get enough saturated fat. The absolutely best source is cold pressed, unhydrogenated coconut oil, to be used for all your cooking and baking.

To eat more sugar for hypoclycemia is a terrible idea! To keep your blood sugar levels at an even level, you need to avoid sugar. That shows how ignorant your doctor is. Try eating six small meals a day instead of three large ones. Eat things your body digests slowly, like vegetables and meat. Don't eat anything processed at all, especially simple starches and sugars. They'll cause a sugar high very quickly, making you feel better temporarily, only to be followed by an extreme sugar low, which will cause dizziness and feeling faint.

Did your doctor check your vitamin D level? If not, I suggest it be done. A lack of vitamin D can also make you feel terrible. Almost all people with celiac disease have low vitamin D levels when diagnosed, and need to supplement.

Anyway, I need to go, I am babysitting (my part time job), and need to check on the kids. I hope this helps a little.

[Fiddle-Faddle]

Aack!! More sugar is the worst thing possible for hypoglycemia!!!

Here are more {{{{{HUGS}}}}}--hang in there!

[gfpaperdoll]

I forgot to mention another thing that I know - although I do not have any scientific evidence but I have observed this in myself & several other people...

& it concerns dairy, when you consume dairy with wheat it helps mask the symptoms of the wheat (gluten) & if you give up dairy & do not give up wheat (gluten) then the reaction from the wheat is worse, so IMO that is why you also like dairy & feel that it is good for you...

I think this is especially true for people like us that evolve to the state where we are only eating wheat & dairy...

I think that is why some people get damage earlier is that their combination of gluten to dairy is off or either for them dairy does not protect their villi from gluten...

wishing you the best...

You are invited to my house to eat & scrapbook anytime - & you won't even have to cook & I will not have to worry about any wheaty hands getting on my scrapping stuff

Let us know if we need to route out a celiac person in Lubbock for you...

[Guest thatchickali]

The reason I say I give up on eating is I don't have a kitchen to prepare this stuff. I have a refrigerator, and a toaster oven.

If I cut out lectin foods, I don't have anything that I can eat....except fruit. The hormel chicken is the only thing I can have because I can't cook myself chicken in my toaster oven.

Lubbock Celiac Group will not respond.

My antibody level was 22, so I shouldn't be that sensitive should I?

[ravenwoodglass]

The reason I say I give up on eating is I don't have a kitchen to prepare this stuff. I have a refrigerator, and a toaster oven.

If I cut out lectin foods, I don't have anything that I can eat....except fruit. The hormel chicken is the only thing I can have because I can't cook myself chicken in my toaster oven.

Lubbock Celiac Group will not respond.

My antibody level was 22, so I shouldn't be that sensitive should I?

Get yourself a hot plate, if things are real tough pm me I have one I don't use that is almost new and I will be glad to send it off. You can do fresh chicken in a toaster oven if you get boneless skinless breasts, just wrap them in foil packets if you are concerned about splatter, I also add a couple of veggies just make sure the tin foil does not touch the heater element and you should be okay. You can do fish that way also. With a hot plate and a pot you can also make soup easily and a number of other things. Soup with fresh veggies would probablly be one of the best things you could eat right now as long as you use easy to digest veggies.

As to the antibody level, my family on testing all had antibody levels at only one to five points over normal. Well except me, I don't show up on the tests. 2 of us are severely impacted with great damage and two have definate symptoms but not as much gut stuff. I guess what I am trying to say is that a lower reading does not mean less damage to your systems.

I am also going to reinforce your need for sublingual B12 right now, no matter what the 'tests' levels are according to your doctor. Mine told me my B12 was in a normal range but after getting all my records you could see the drop from over 500 to about 210, but my doctor insisted that 210 was still a normal level and wouldn't address it. The B12 will make a big difference in your energy and thinking and may also help your mood.

[Ursa Major]

The reason I say I give up on eating is I don't have a kitchen to prepare this stuff. I have a refrigerator, and a toaster oven.

If I cut out lectin foods, I don't have anything that I can eat....except fruit. The hormel chicken is the only thing I can have because I can't cook myself chicken in my toaster oven.

Lubbock Celiac Group will not respond.

My antibody level was 22, so I shouldn't be that sensitive should I?

At first I reacted to all lectins like I was glutened. Rice would cause horrible stomach aches, diarrhea and extreme sleepiness, as well as terrible joint pain. Eggs caused a similar reaction. The rest weren't quite as bad (other than the gluten grains, of course, which were even worse).

If you read up on lectins, you will find out that it is very rare for anybody to be permanently intolerant to all lectin groups. Usually, only one or two are permanent in the end (after about a year or so). It took me two years, but I find that now I can tolerate rice sometimes, and that beans aren't as bad any more, either. A little dairy now and then is okay, too.

In the meantime, isn't cutting out foods worth it if it makes you feel better? I don't even have fruit left, all I can eat is peeled pears, due to my intolerance to salicylates! And most vegetables are out, too.

I am not saying it is easy, far from it. But I prefer having a limited diet to being back on codeine 24 hours a day for terrible pain (I was diagnosed with fibromyalgia at one point, but all those symptoms were caused by foods, or by having Addison's Disease and Hypothyroidism).

As was said before, an antibody level of 22 is just as bad as one higher or lower. If it is over what is considered normal, it is bad, period.

You might need to get creative with that toaster oven! You can cook a lot of stuff in that if you have to.

[SillyBoo]

I agree that a simple diet is best in the beginning. I can't tolerate eggs or peanut butter either, but found that in the first months after going gluten-free I craved protein. So, I ate LOTS of baked chicken and fish. As was pointed out, this really is doable in a toaster oven. I also couldn't eat beans, dairy, raw veggies, gluten-free crackers & cookies, soy, chocolate, and packaged foods. I mostly stuck with chicken, cooked veggies, fruit (applesauce might be friendlier to your guts than raw fruit), and rice. It gets boring, but feeling better is good motivation to stick with it.

After 10 months of being gluten-free, I stil find I need to pull back on all the "extras" (like salads and raw veggies, gluten-free crackers, and chocolate) when I am stressed or starting to feel crummy again.

Good luck!! I know it's difficult, especially when you don't have a complete kitchen that is gluten-free. A crock-pot might also help - it's so easy to throw in a few pieces of chicken and some veggies in the morning, and have dinner ready at night.

[Ursa Major]

Hey, why didn't I think of that, a crock pot is a fabulous idea! You throw a bunch of food in before you leave in the morning, and come back to a delicious meal. It is so easy to do, and you can cook just about anything in it.

If you don't have money for a good slow-cooker cookbook, you can find tons of recipes on the Internet. You can probably get a small slow-cooker for about $20.00. Well worth it.

[Guest thatchickali]

Even though I have lost my hope for a future with this disease I appreciate all the support.

It makes me so angry that the support group here wont get back to me, because I know there are people in this town who could help me but I don't have access to them......

Thanks for the advice.

[sickchick]

You poor thing. Hope you find relief soon

[Ursa Major]

Even though I have lost my hope for a future with this disease I appreciate all the support.

It makes me so angry that the support group here wont get back to me, because I know there are people in this town who could help me but I don't have access to them......

Thanks for the advice.

Please don't lose hope! Through 50 years of being sick, I never lost hope of finding out what was wrong with me. And now I am finally slowly getting better. I am sure you can manage to get better if you keep trying. Sometimes it just takes a long time, which is discouraging for sure.

I hope that somebody from the support group will get back to you soon.

[miles2go]

I'm guessing that you're at college, from the roommate and cooking restrictions that you describe and if that's the case, I'd be thomping on the door of the Equal Opportunity Employer office, if you have one on campus. They should definitely be able to help you out in some way and if you don't have such an office on campus, head to the President's office and ask why there isn't one.

Bestest from a displaced Texan in Maine!

Hope you work things out,

Margaret

[ravenwoodglass]

Margret is absolutely right about the college issue, but I would go to the college first. When my DD went to college they put her in senior housing in a private room with a small kitchenette even though she was a freshman because that was the only way to accomadate her needs. If you are in college the first thing I would do is talk to your advisor and the folks who set up your housing. They can and will help. We also got refunded the money for the meal plan as they could not safely feed her.