In Desperate Need Of Some Positivity :/

[zebaldwin]

Well, I decided to start the diet Monday in high hopes that gluten was my problem. I have been very afraid to start in fear that it wouldn't help (this kind of seems like my last hope)...5 full days in I don't feel any better...exactly the same. The constant brain fog, weird nauseous headaches/migraines every day, weakness, etc. Maybe I am jumping the gun (and I obviously didn't expect to be better in a week) but I thought there might be some sign that things are working...but I feel exactly the same.

On top of that, I feel like I'm going insane with making sure nothing is "contaminated", deciding whether to eat soy and mil or not, etc...so on top of everything, I feel like I have nothing to eat and I'm already a really skinny guy.

Not sure what I'm asking in this topic. Maybe someone who didn't feel any changes for a while...I don't know. I just feel more hopeless and horrible than ever...Sorry for being such a downer...and I don't mean to ask any more of this awesome board!

Thanks guys.

Zack

[ravenwoodglass]

It is hard at first and it does take some time to heal. What are you eating? Stuff like steak or chicken with potatoes and veggies and fruits are going to be safe and are easy to cook. If you have nonstick pans that are scratched do get a new one to cook. Chicken cooks easily in the oven and you can just put it on a piece of tin foil to prevent any CC issues. Are there things that you really like to eat? Tell us and maybe we can help you find gluten free versions. Do you live near a Wegmans? If you do they mark all their name brand items that are gluten free with a circle G. Some companies like Kraft and Unilever, Hormel will all label clearly. If you don't see wheat, rye barley or oats on the package it is safe. There are even some good convience foods that are safe, Dinty Moore Beef Stew and Jimmy Dean Skillets are a couple of examples.

You may also experience a bit of withdrawl which may make you a bit moody and make you feel discouraged but that will pass. If there is any way that we can help please don't hesitate to ask. It will get easier in time.

[zebaldwin]

Thank you...

I think my biggest problem is I don't know if this is really the problem. It really sounds like it should be, but my blood was negative and I just decided to start cold turkey.

Basically I have been eating fruit, vegetables, eggs, gluten free rice, and some "gluten free" labeled frozen meals that I just found out were processed on machinery possibly with wheat. I was also eating utz chips and some things that have dairy/soy that I am not contemplating.

I go to school and eating on campus/in the dorm is very hard. Cooking myself is hard.

I plan on going shopping tonight at Hannaford which I heard has some good stuff. (I do not have Wegman's near me unfortunately)

I'd really like some meat..

I've just felt like this for so long...and I thought after 5 full days I would at least have a hint...and if this isn't my problem (gluten) I have no idea where to go from here...and I am scared to death of that.

[ravenwoodglass]

Will your dorm let you use a toaster oven? Some will some won't and you can cook a lot of stuff in one of those. Are you able to at least have a toaster, hot plate and microwave in your room? If you are that will help. If you have insurance can you at least get the blood testing done before you start the diet? Some schools will make some allowances for someone who is diagnosed. My DD's college put her in a senior dorm her freshman year so she could have her own kitchen.

[zebaldwin]

The dorm has a kitchen with a microwave and an oven. We can't have stuff like that in our rooms.

I tested negative on the blood test.

[ravenwoodglass]

The dorm has a kitchen with a microwave and an oven. We can't have stuff like that in our rooms.

I tested negative on the blood test.

I'm glad you have access to a place to cook as that helps. Do get your own pans and make use of tin foil. If you need any ideas for stuff you can cook easily just ask and someone is sure to have an idea for you. Some of my favorite non cook snack stuff is gluten free pretzels, Snyder makes good ones and so does Glutino, raisins, nuts and chocolate chips all mixed together in a bag. Easy to carry and snack on between classes if nothing safe is around.

[MsCurious]

Hi zebaldwin,

Just wanted to tell you ... I was feeling really hopeless and frustrated two days ago, so I know what you feel like. It seems overwhelming and endless, but it will get better. I took an active approach and I'm really getting things hopping on my end. Got the IGA deficiency test I wanted to determine if that's what caused first tTG to be negative. That will answer a lot of questions. I have approval for biopsy and that is postponed for these test results, and hopefully I can reschedule with someone other than "G I Jerk"

BUT ... none of this would have happened without my proactive approach, and tons of reading and research and connecting the dots and self advocating with the doctors... Being persistent! AND.... AND .... AND... last but not least... the WONDERFUL support and kind words and wise advice I've received from the wonderful members of this community.

Keep that in mind. Don't give up... and keep trying! Best of luck to you ...it will get better!

[GFinDC]

How do you do with meats? Most plain meats you can buy in a grocery store are gluten free. Hamburger, chicken etc as long as it doesn't have those marinades and such on it already should be fine. French's mustard, salt, pepper, turmeric, and garlic, are good spices to use. Frozen green beans and veggies are generally ok, but check the labels. You can eat plain hamburgers with lettuce instead of bread, or get brown rice tortillas at Trader Joes or Whole foods to make wraps. There is also a recipe for microwave buns or muffins on here somewhere.

If you have any digestive condition a simple, whole foods diet is likely to be better for you than the standard fare. But how long have you been eating the standard fare? 18 years? Give it a couple months if you want to have an idea how your body will react to the change.

Check out the flourless peanut butter cookie recipe on this board. It is easy and makes a cheap snack for classes and running around.

1 cup sugar (or 1/2 cup works)

1 cup soy-free peanut butter

1 egg

Mix it all up and bake the cookies at 350 F for 10 to 12 minutes.

Cheap and easy.

[eatmeat4good]

Try to get more protein.

It helped me a lot.

Dinty Moore Beef Stew is gluten free last I checked and it is a quick meal.

Increasing protein by eating nuts also gives you the benefit of the good fats they contain. If you tolerate nuts that is.

You can carry packs of nuts with you to snack on during the day.

I buy in bulk then carry small ziplocks with nuts everywhere I go.

It is hard to tell right away whether this is working for you or not. I hope you will stick with it for a couple of months though to be sure.

I don't know if it is helpful or not, but 1/3 of my food is Meat, 1/3 is Nuts and 1/3 is Fruit or Vegetables. In the beginning it was very hard for me to tolerate the fruit and vegetables.

Just to encourage you to hang in there, I'm 5 months into this and the 4th month is where I saw the most improvement.

Don't quit 5 minutes before the miracle!

You can do this. Negative test results or not. Your body is asking for help and you ARE helping by what you are doing now. Like DC said, if you have been eating gluten for 18 years, your body may take some time to heal. But it will be soooo worth it if this is the problem and you hang in there for the good results!

Cheering for ya!

[zebaldwin]

Thank you guys!

It is very hard to do something like this without knowing the outcome, but then again, I have tried a lot of other things!

Last night I went out and bought some things. I bought some hormel lunch meat (looked it up on their website) and some hotdogs...I have really missed meat!

Also decided to eat some cheese (do you think that is smart or not?) Digestive issues really aren't very prominent for me.

Also bought some gluten free pasta and sauce (going to make that tonight)

What nuts do you eat/recommend? Right now I have plain, raw peanuts because every nut I looked up seemed to be iffy.

Let me know what you think! (especially about eating cheese...)ANd thank you again!

[eatmeat4good]

I eat cheese....ssshhh don't tell anyone.

I can't stop.

Also I eat all kinds of nuts/seeds.

I get them at NutsOnline.com

They also have Certified Gluten Free stuff and I buy Almond flour and Coconut flour from them.

You are right to be concerned about nuts.

The ones I have bought in the grocery stores made me ill. I have read something about the way they process nuts that they can be contaminated but I do not recall the details.

Others have recommended Planters nuts as being safe and a good labeling company.

I've had no problem with any of the stuff I have gotten from NutsOnline.

It's just my source...there may be others.

[GFinDC]

Thank you guys!

It is very hard to do something like this without knowing the outcome, but then again, I have tried a lot of other things!

Last night I went out and bought some things. I bought some hormel lunch meat (looked it up on their website) and some hotdogs...I have really missed meat!

Also decided to eat some cheese (do you think that is smart or not?) Digestive issues really aren't very prominent for me.

Also bought some gluten free pasta and sauce (going to make that tonight)

What nuts do you eat/recommend? Right now I have plain, raw peanuts because every nut I looked up seemed to be iffy.

Let me know what you think! (especially about eating cheese...)ANd thank you again!

Hey Zack,

You asked about cheese. My big think on it is the way to find out is to do it. In other words if you want to know if it is bothering "you" vs. other people who may have different bodies after all, then you need to try living without it for a while. There is no food intolerance testing that I know of, except to eliminate the food from your diet and see how it goes. There are food allergy tests but allergies are not the same as food intolerances. It is a different set of immune cells that react in allergies.

Generally I think most people will be able to tell if a food is a problem if they eliminate it for a couple weeks. However, when I eliminated soy, it took a week and a half to start feeling somewhat better, and over a month to really feel quite a bit better. So the time can vary a lot.

[mushroom]

It is very hard to do something like this without knowing the outcome,

But isn't that what life is all about?? We don't ever know the outcome until the end of something. Do you find it hard to watch a football game because you don't know the outcome?

We do not come into life with a roadmap, we have to find our way with guidance from others. We take many wrong turns, some of them which change our lives negatively, and many more right turns which work out to our advantage if we are wise. Other roads are a toss-up But this is a road where you can always turn off onto a side road if you are not happy where it is taking you. Start the journey and see how well the road feels under your feet.

[GlutenFreeManna]

Yikes--a shared dorm kitchen is going to be a gluten land mine for gluten free cooking. It's going to be really hard for you to cook whole foods safely and even if you do make them safely, can you safely store them in the shared dorm fridge? I usually say to eat as few processed foods as possible but in your case you might want to get as many shelf stable gluten-free items as you can keep in your room and make sure no one is cc them by using the kitchen. You are still really early in the process and it could take a month or more to feel better and/or get rid of all sources of cc. Here are some suggestions for food you can make and keep in you room:

Rice cakes with peanut butter

Old Wisconsin beef sticks--these say gluten free right on them

Hormel pepperoni sticks

Popcorn--most microwave popcorns are okay, some are not, I've heard to avoid the Target brand. Or perhaps you can purchase an air popper if your dorm will let you keep it in your room. I would think this would not be as much as a hazzard as a toaster in the room.

Progresso Soups--not all are gluten-free, look for the ones labeled Gluten free. Be sure to cover your bowl well with paper towel when heating in the microwave.

Lays Potato chips

Lays Stax

Mission Corn chips

Fritos

Lara Bars

Enjoy Life bars

Gluten free cereals: Chex, Nature Valley, Gorilla Munch

Energ gluten-free pretzels

Banana chips

dried fruit

nuts

Udi's Gluten free Granola

Bakery on Main gluten-free granola

Betty crocker fruit snacks

Nature Valley Almond Crunch bars--not sure if that's the exact name but they say Glutne free in big letters on the front

raisins

individual applesauce cups

individual fruit cups

shelf stable pudding cups (if you don't have a problem with dairy)

bananas

apples

oranges

rice crackers

Rice stick noodles from an Asian store--these just have rice and water as ingredients and will "cook" by just soaking in a bowl of hot/boiling water. You could get a covered tea kettle and heat the water on the stove then take it back to your room and pour on the noodles. That way the noodles never enter the shared kitchen.

Also check the Asian section of your local grocery stores for gluten free noodle bowl type things you can make in the microwave. I can't think of the name brands right now but they are just rice noodles and flavorings and they say gltuen free on them.

Some final words of advice about using the shared kitchen:

Don't let any of your food touch anything in there. Use paper plate and paper towels as a barrier between your food and the counters. Use foil to wrap or cover anythign made in the oven. Leave the kitchen to eat if possible. And wash your hands before you touch your food. If you touch the microwave door for example to open it and someone before you had just finished baking with flour in the kitchen, everything you touch in the kitchen is contaminated. It's okay, just don't touch your face (eye, nose, mouth) until you go back to your room or the bathroom to wash your hands. I would try to avoid cooking there and eat all shelf stable foods but that probably can't be avoided all the time.

[zimmer]

Another thought is to talk to the food service at your school. I'm sure they can help you out, since they most likely have experience dealing with students with different dietary needs. Maybe they can help you with at least one solid hot meal a day, and maybe more! They could point you to their "safe" menu items.

[zebaldwin]

Thanks a lot guys!

Another quick question,

If I am the diet and gluten or soy or dairy is a problem, will I feel a little better even if i mess up a couple times with cross contamination or whatever, or will I never know? All I want is a sign that this is working...and after a week I don't have one. But I am sure I have messed up a couple times.

I wish I could just pay the gluten fairy to make this my problem or something!

Thanks again guys. I really really appreciate it.

[GlutenFreeManna]

Thanks a lot guys!

Another quick question,

If I am the diet and gluten or soy or dairy is a problem, will I feel a little better even if i mess up a couple times with cross contamination or whatever, or will I never know? All I want is a sign that this is working...and after a week I don't have one. But I am sure I have messed up a couple times.

I wish I could just pay the gluten fairy to make this my problem or something!

Thanks again guys. I really really appreciate it.

Everyone's reactions and symptoms are different. I cut out gluten, dairy and soy at the same time and I found that I felt worse for the first couple weeks. One way you can figure out if certain foods are bothering you is to keep a food and symptom journal. Symptoms can show up anywhere from 20 minutes to 72 hours after you eat something so unless you write it all down (or use an online food traker like the one on livestrong.com) you will have a hard time seeing patterns between your symptoms and what you ate. Also try to eat as simply as possible. Since you are limited in what you cook, try to eat things with as few ingredients as possible. That way you can better pinpoint what is bothering you. Some people will know right away when they are glutened after going gluten free and some people are not as sensitive and need to reintroduce it for three days before the negative effects catch up with them. The longer you do this the better you will get at figuring out when you mess up and avoiding makign the same mistakes in the future. Don't worry, you'll get the hang of it eventually.

[zebaldwin]

Everyone's reactions and symptoms are different. I cut out gluten, dairy and soy at the same time and I found that I felt worse for the first couple weeks. One way you can figure out if certain foods are bothering you is to keep a food and symptom journal. Symptoms can show up anywhere from 20 minutes to 72 hours after you eat something so unless you write it all down (or use an online food traker like the one on livestrong.com) you will have a hard time seeing patterns between your symptoms and what you ate. Also try to eat as simply as possible. Since you are limited in what you cook, try to eat things with as few ingredients as possible. That way you can better pinpoint what is bothering you. Some people will know right away when they are glutened after going gluten free and some people are not as sensitive and need to reintroduce it for three days before the negative effects catch up with them. The longer you do this the better you will get at figuring out when you mess up and avoiding makign the same mistakes in the future. Don't worry, you'll get the hang of it eventually.

Did you end up being sensitive to gluten dairy and soy? Why were your symptoms worse? (also, was it hard to keep at it?)

I think I am a person with a delay with my symptoms (if it is indeed some kind of food) because it doesn't happen immediately or anything.

Thanks for the info!

[GlutenFreeManna]

Did you end up being sensitive to gluten dairy and soy? Why were your symptoms worse? (also, was it hard to keep at it?)

I think I am a person with a delay with my symptoms (if it is indeed some kind of food) because it doesn't happen immediately or anything.

Thanks for the info!

Yes to all three. Gluten was my worst offender when I tried to add it back in. I avoid it at all costs and I consider myself to have celiac even though I never got the blood test. Dairy caused the typical symptoms of lactose intolerance for me (bloating, cramping, etc). After about 5 months dairy free I found I could tolerate small amounts of lactose free cheese and yogurt, HOWEVER I recently had to give up dairy again because I started having allergic reactions to it--meaning my tongue will actually swell up and I can't breath type of allergic reactions. Not many people have allergic reactions develop like that however. I'm currently undergoing testing for food allergies and other illnesses that could cause me to develop new food allergies. You probably don't have to worry about developing a true allergic reaction to milk but if you have an intolerance to either lactose or casein it can make your life pretty misserable. Soy is more complicated for me and I'm waiting on the results of some tests before I decide whether to keep it out of my diet permanently or add it back in. I have very terrible, noticable syptoms of stomach cramping if I eat anything with soy flour or whole soy beans. I get migrain headaches from things with soy oil and I get fatigue if I eat too many items with soy lectin. I can sometimes get away with eating chocolate with soy lecthin in it for example but when I eat too much the effect seems to be culmulative and I end up with a lot of fatigue and body aches. So I try to avoid soy as much as possible but I am not nearly as strict with it as I am with gluten and the foods I have life-threathening allergic reactions to (see my signature).

Many people go through a period of withdrawal when they cut out gluten, soy or dairy. The withdrawal can be anywhere from a couple days to two weeks. For me I think it was the worst because I was also grain free and sugar free for the first month. Low carb people call this period of withdrawal "induction flu". Others might refer to it as "die off". Many people here have commented that they seem to struggle the most with cravings and fatigue when they first go gluten/dairy/soy free. Once that iniatial period passes, however, they often feel better than they felt in years. You should give it at least a month and then if you don't feel better ask your doctor to keep testing you for other illnesses. There are so many symptoms that can resolve on a gluten free diet, but I am not one that believes every single sick person has a gluten problem.

[etta694]

I am going to add 2 cents in here too. I thought I was eating gluten free for the last 3 weeks and couldn't figure out why I still felt sick. Now I realize - I was popping shelled sunflower seeds into my mouth every once in a while, I had made myself something with cinnamon and I had tums a couple of times. Tums have maltodextrin, cinnamon can be cut with flour (other spices can be as well) and the seeds...? I'm thinking they were also contaminated... processed on a line with wheat products.

Becoming aware of all the sources is the first huge battle... but it's worth it!!

[psawyer]

I don't know if Tums are gluten-free, but if there is gluten it isn't the maltodextrin. Maltodextrin is gluten-free.

[etta694]

Then.. I must be alergic to something in the Tums... I had a reaction to them.

[GFinDC]

Hey Zack,

One more thing you could try is Old el Paso corn tacos shells. They are available in many stores at a reasonable price. You can try the rinsing with water than zapping trick with them also if you want them softer.

Open Original Shared Link

[zebaldwin]

Thanks so much guys! This is all very very helpful...still not noticing much of an improvement, but I am going to keep at it for now.

Etta, that is what I am paranoid about. Deciding what to eat, but then realizing maybe I am eating one little thing that has one little ingredient that is messing me up...or if I am allergic to something else that I am not doing a good job eliminating. For example, I keep going back and forth with whether to drop dairy and soy as well. So over the past week I have had days where I eat dairy and soy, then decide not to. It's hard.

I just don't want there to be no results, and then I drop the diet (and continue my endless search for an answer) never knowing it was something stupid little thing.

It's very stressful, and I just don't know how to do it 100% right...

Also, my problem is that I don't really have digestive symptoms...so issues don't really occur right after I eat something...so it's almost impossible to troubleshoot :/

As of now, I have been eating fruits, vegetables, Utz potato chips, Peter Pan peanut butter, gluten free pasta and sauce. Hormel "natural" pre-packaged lunch meat. Hormel pepperoni, gluten free white rice. Earlier last week I was eating "gluten free" frozen meals. but even though they said gluten free in big letters, it also said processed on machinery with wheat...so I stopped eating that. Also, like I said, dairy and soy have come in and out. But I am trying to leave them out as of now

[applegirl03]

Thanks so much guys! This is all very very helpful...still not noticing much of an improvement, but I am going to keep at it for now.

Etta, that is what I am paranoid about. Deciding what to eat, but then realizing maybe I am eating one little thing that has one little ingredient that is messing me up...or if I am allergic to something else that I am not doing a good job eliminating. For example, I keep going back and forth with whether to drop dairy and soy as well. So over the past week I have had days where I eat dairy and soy, then decide not to. It's hard.

I just don't want there to be no results, and then I drop the diet (and continue my endless search for an answer) never knowing it was something stupid little thing.

It's very stressful, and I just don't know how to do it 100% right...

I had the same issues that your having, and it turns out I do have celiac, but I also have other food allergies. I had a blood work up done that showed I saw allergic to sunflower oil, cayne pepper, and anchoives really really severely. I'm also allergic or "intolerant" to like 40 other things, but those were the big 3 besides gluten. It took awhile before I felt better, but I never felt 100%...Then my doc ran another test and it turns out I had a severe yest infection in my digestive tract....after a month of diflucan I was feeling like myself again, so you may want to consider doing an all natural yeast cleansing treatment...yu can get them at any natural food store, and even if that isnt your problem it wont hurt you in any way....good luck and hang in there. I know how you feel and there is light at the end of the tunnel!