Need Advice

[Jack V]

Two months ago I was feeling on top of the world because all my symptoms were completely gone. My anti-social personality(not social anxiety... Just when I feel like crap I don't want to talk to people/enjoy it) was gone so I made a lot of new friends, my knee pain was completely gone which had me flabbergasted, eczema... gone...flatulence...gone...more energy, and most importantly I was enjoying life.

When 2nd semester of my last year in high school started things went back to the way they usually are. Stopped working out, don't want to talk to people, don't hang out with my friends as much, knee pain back, flatulence, feel like crap. I wish I knew what it was but all I have is suspicions. I'm ruining my last semester and... I don't care. One of my friends yesterday told me that he didn't want to go to our last two blocks because he didn't feel good(We have calculus and physics 30 together). When he said this I started to feel sorry for myself because most days I dread going to class. It's horrible for myself to concentrate with brain-fogginess and constantly thinking of why the hell I feel like this. Which gave me the push to not go to school today.

Well... My point is that I haven't been feeling stellar lately and I don't know why. My diet for the most part hasn't changed, still taking the same precautions. I only have one suspicion of to why I feel like this, and it's kind of... dumb, It makes me feel like I'm just being paranoid, because I don't even know if it's plausible. Since the start of this semester I've been hanging out with my friends at lunch in the cafeteria. Everyone's eating stuff from the cafeteria like pizza/spaghetti or bringing sandwiches. Not only that we sit near to where they cook these foods and coincidently I seem to feel the worst in my 3rd and 4rth blocks. I don't know how common(or possible) it is to be this sensitive to gluten and it makes me feel stupid discussing this believe with my mom(she doesn't understand). Nevertheless I'm going to try what I think may help because I can't stand being like this.

If anyone has anything that relates to this please share...

[YoloGx]

Hi Jack. Just to let you know you are not alone, I too cannot be around a kitchen where they are baking and cooking things with gluten without getting ill. Sitting at a table with a bunch of gluten eaters is also a little dicey. I have been known to get sick from someone handing me a bottle of water and/or opening it up. I have also gotten ill after shaking someone's hand and then eating afterward without washing first.

It makes the social thing a little dicey to say the least But as you are discovering not taking precautions for yourself isn't a solution either, given what its doing to your grades/brain/enjoyment of life etc.

Would it be possible to sit far away from the kitchen area or even outside?? Also let your friends know you have to have a gluten free space around you?

Another idea would be to either get involved with or start a gluten free club at school.

I just wish I had known what you know at your age. It would have made life a lot easier even though it might have been awkward at times. For me I got sick and foggy headed way too much from not knowing.

Good luck! I am sure you can figure out a way for you to be clear headed and healthy again.

[Marilyn R]

Two months ago I was feeling on top of the world because all my symptoms were completely gone. My anti-social personality(not social anxiety... Just when I feel like crap I don't want to talk to people/enjoy it) was gone so I made a lot of new friends, my knee pain was completely gone which had me flabbergasted, eczema... gone...flatulence...gone...more energy, and most importantly I was enjoying life.

When 2nd semester of my last year in high school started things went back to the way they usually are. Stopped working out, don't want to talk to people, don't hang out with my friends as much, knee pain back, flatulence, feel like crap. I wish I knew what it was but all I have is suspicions. I'm ruining my last semester and... I don't care. One of my friends yesterday told me that he didn't want to go to our last two blocks because he didn't feel good(We have calculus and physics 30 together). When he said this I started to feel sorry for myself because most days I dread going to class. It's horrible for myself to concentrate with brain-fogginess and constantly thinking of why the hell I feel like this. Which gave me the push to not go to school today.

Well... My point is that I haven't been feeling stellar lately and I don't know why. My diet for the most part hasn't changed, still taking the same precautions. I only have one suspicion of to why I feel like this, and it's kind of... dumb, It makes me feel like I'm just being paranoid, because I don't even know if it's plausible. Since the start of this semester I've been hanging out with my friends at lunch in the cafeteria. Everyone's eating stuff from the cafeteria like pizza/spaghetti or bringing sandwiches. Not only that we sit near to where they cook these foods and coincidently I seem to feel the worst in my 3rd and 4rth blocks. I don't know how common(or possible) it is to be this sensitive to gluten and it makes me feel stupid discussing this believe with my mom(she doesn't understand). Nevertheless I'm going to try what I think may help because I can't stand being like this.

If anyone has anything that relates to this please share...

Hi Jack,

I can definitely relate!

The "I don't care" or "I can't do it" feeling is a "4" on a scale of 1-4 of food allergy symptoms for pediatricians and allergists. It's called a "feeling of doom". (AKA depression)

Many of us who can't tolerate gluten develop other food intolerances with foods who have proteins that are similar in structure ... like dairy, soy, corn.

If you can, it may be beneficial to see an allergist for skin prick testing (not fun, but enlightening).

If not, and you're sure you aren't getting accidental gluten, it might be worthwhile to try eliminating some of the common food intolerant sources.

If you eliminate dairy, please look into a gluten-free multi-vitamim with minerals, gluten-free calcium and gluten-free Vitamin D-3. You need all of that!

I hope you feel better and find the culprit! And I hope you get an "A" in Calculus, I know you can do it! (Keep us posted.)

Good luck Jack, you just have to figure it out and you're smart enough to do it! You have the "ugh", which is normal until you find the food bug.

[Jack V]

Hi Jack. Just to let you know you are not alone, I too cannot be around a kitchen where they are baking and cooking things with gluten without getting ill. Sitting at a table with a bunch of gluten eaters is also a little dicey. I have been known to get sick from someone handing me a bottle of water and/or opening it up. I have also gotten ill after shaking someone's hand and then eating afterward without washing first.

It makes the social thing a little dicey to say the least But as you are discovering not taking precautions for yourself isn't a solution either, given what its doing to your grades/brain/enjoyment of life etc.

Would it be possible to sit far away from the kitchen area or even outside?? Also let your friends know you have to have a gluten free space around you?

Another idea would be to either get involved with or start a gluten free club at school.

I just wish I had known what you know at your age. It would have made life a lot easier even though it might have been awkward at times. For me I got sick and foggy headed way too much from not knowing.

Good luck! I am sure you can figure out a way for you to be clear headed and healthy again.

I think I'm just going to do my homework/study at lunch in the library or something. It doesn't help though when my mom and her boyfriend are baking pizza & breaded chicken wings in the oven(like 30 mins ago...). I told her that when you bake stuff with gluten in it, it may get in the air. She replied something like well, yeah maybe, but other people need to eat too. I told her I'll probably feel worse tomorrow, and oddly, I hope I do.

Hi Jack,

I can definitely relate!

The "I don't care" or "I can't do it" feeling is a "4" on a scale of 1-4 of food allergy symptoms for pediatricians and allergists. It's called a "feeling of doom". (AKA depression)

Many of us who can't tolerate gluten develop other food intolerances with foods who have proteins that are similar in structure ... like dairy, soy, corn.

If you can, it may be beneficial to see an allergist for skin prick testing (not fun, but enlightening).

If not, and you're sure you aren't getting accidental gluten, it might be worthwhile to try eliminating some of the common food intolerant sources.

If you eliminate dairy, please look into a gluten-free multi-vitamim with minerals, gluten-free calcium and gluten-free Vitamin D-3. You need all of that!

I hope you feel better and find the culprit! And I hope you get an "A" in Calculus, I know you can do it! (Keep us posted.)

Good luck Jack, you just have to figure it out and you're smart enough to do it! You have the "ugh", which is normal until you find the food bug.

I have had a blood prick test, the positives were I think it said gluten, milk which I already knew, eggs which was surprising, and tobacco. Do you recommend having another allergy test because It's been about 2 years since I've had that test, and allergies can change right? I don't know if you can contract new allergies but I know I used to be allergic to corn and am not anymore. Regarding the vitamins I'll make sure to get some, forgot about them lately... Regarding Calculus I have a 89% which I was disappointed about because ... idk I can do way better.

On another topic my moms going to bring me to the doctor. Is there any information I should be equipped with being allergic to gluten? All i really know is that if they test for gluten sensitivity it may be negative if I'm successfully avoiding it.

Thanks,

Jack

[eatmeat4good]

Jack,

Did you go gluten free on your own? Your mom is bringing you to the Dr. because you are feeling badly now or because she wants to see if you have gluten intolerance?

There is no test for the sensitivity or intolerance.

The symptoms can be the same though.

I want to hug you. I am sorry your mom said other people have to eat too. That is not very nice.

As far as the kitchen at school. I think you are right. There is probably flour in the air and it hangs for hours. I used to bake a lot, I know.

I want to mention vitamins.

Vitamin deficiencies can get you. Are you taking your vitamins?

It is interesting that the disease BeriBeri can be translated "I Cannot. I Cannot"

It is a vitamin B deficiency. I'm not saying you have it. Only that you need to be taking vitamins because several of them, when deficient, can cause lethargy and depression. It won't change overnight. You have to keep taking them. B and C don't stay in your system long. It is just another avenue to appreach the "I don't care" feeling. Because you do care and you want to feel better. That is very clear from your post.

I feel for you. I hope your mom gets more understanding, I hope your life gets easier, I hope you take your vitamins, and I hope the Dr. does something to help you.

I'm glad you come here for your information and support. Sounds like you need more supportive people in your life. It sucks to be sick. But just remember, this isn't you, this is gluten...and illness andyour body is just trying to tell you something.

I'm so glad you know this at your age. I wish I would have too. Like Yolo said.

Please let us know how you do.

[eatmeat4good]

Maybe ask the Dr. to test your vitamin levels?

[WhenDee]

Hi Jack...

Just wanted to offer a cyber >>hug<< and offer my empathy for your situation. My celiac symptoms started very early in life and I didn't figure it out until I was nearly 32 years old (just a few months ago).

No one in my family would have done a single thing to assist me, either. Add to this the fact that my accumulating symptoms were labeled as "hypochondria" by at least one of my doctors... and I spent a lot of my life feeling really crappy mentally.

The depression is the worst. A previous poster was right about the B vitamins. You could have other vitamin deficiencies as well - I had several. The b's in particular will make you feel tired & depressed, though.

Keep in mind that you ARE worth it. You are worth it and you owe it to yourself to be as healthy as possible, and to do what you need to do to be healthy. Your mother may be too preoccupied, and you can't do anything about that --> but you can make a choice to surround yourself with people who will genuinely care about you. You're reaching an age where it will all be up to you.

Now that I'm a mom (and interestingly, my daughter may be celiac...) I have found that the best way to heal from the neglect I went through as a kid is to be the person I needed them to be. I am that person for my children -- and you can be, too, for your future spouse, children, friends, etc.

Keep us posted on your doctor visit... wishing you the best.

[YoloGx]

Just wanted to comment concerning the not caring and B vitamins that eatmeat4life mentioned.

Beri Beri is caused by B1 deficiency--it messes with your mood and thinking clearly as well as causing a puffy belly and aching limbs and sometimes weird nerve problems elsewhere. Which I had/have unless I take co-enzyme B1 on an empty stomach.

I was taking B vitamins but they weren't working. So I then found out if I take the co-enzyme B's they go directly into the blood stream and thus do work even for the likes of me.

I discovered I couldn't get shots and the sublingual co-enzyme B1 wasn't appropriate for me due to the sorbitol. So I take co-enzyme B complex so all the B's will be balanced plus no offending extra ingredients.

I think there are two brands that have that now. I use the one from country life.

[potatopeelingmom]

Hi Jack,

Flour in the air take 2 days to settle. I think you are getting cross contaminated, at the school cafeteria and home.

Perhaps you could speak to your mom about setting up the kitchen, so one area is completely gluten-free and she could limit her meals to non-complete gluten ones. There are so many pizza restarants. Perhaps she could go out and have pizza while out of the house. Tinkiyada and Gogo Quinoa make delicious pastas the whole family can eat. Living without has wonderful recipes that could help your mom make gluten-free pizza instead.

I really believe that getting CC'ed with gluten can change your mood and make you feel ill.

I hope you can work out a happy medium with your mom.

Take care,

Monica

[Jack V]

Jack,

Did you go gluten free on your own? Your mom is bringing you to the Dr. because you are feeling badly now or because she wants to see if you have gluten intolerance?

There is no test for the sensitivity or intolerance.

The symptoms can be the same though.

I want to hug you. I am sorry your mom said other people have to eat too. That is not very nice.

As far as the kitchen at school. I think you are right. There is probably flour in the air and it hangs for hours. I used to bake a lot, I know.

I want to mention vitamins.

Vitamin deficiencies can get you. Are you taking your vitamins?

It is interesting that the disease BeriBeri can be translated "I Cannot. I Cannot"

It is a vitamin B deficiency. I'm not saying you have it. Only that you need to be taking vitamins because several of them, when deficient, can cause lethargy and depression. It won't change overnight. You have to keep taking them. B and C don't stay in your system long. It is just another avenue to appreach the "I don't care" feeling. Because you do care and you want to feel better. That is very clear from your post.

I feel for you. I hope your mom gets more understanding, I hope your life gets easier, I hope you take your vitamins, and I hope the Dr. does something to help you.

I'm glad you come here for your information and support. Sounds like you need more supportive people in your life. It sucks to be sick. But just remember, this isn't you, this is gluten...and illness andyour body is just trying to tell you something.

I'm so glad you know this at your age. I wish I would have too. Like Yolo said.

Please let us know how you do.

My father introduced me to Celiac Disease about a year ago. We went to a naturopath, had a blood prick test. Gluten, milk, eggs, and tobacco were positive. Gluten and eggs were the two surprises, the naturopath suggested going off gluten for 6 months and then try to reintroduce it, his light words made it sound less severe so I only got really serious with this diet about 5 months ago. If I remember correctly he gave me a B5 vitamin, multivitamin, and a Calcium-Magnesium one. Since I've started to live with my mom for the majority of the time I've kind of forgotten about my vitamins. So I'll definitely look into checking my levels and starting to take them regularly again.

Thanks for all the sympathy and advice everyone.

[GlutenFreeManna]

My father introduced me to Celiac Disease about a year ago. We went to a naturopath, had a blood prick test. Gluten, milk, eggs, and tobacco were positive. Gluten and eggs were the two surprises, the naturopath suggested going off gluten for 6 months and then try to reintroduce it, his light words made it sound less severe so I only got really serious with this diet about 5 months ago. If I remember correctly he gave me a B5 vitamin, multivitamin, and a Calcium-Magnesium one. Since I've started to live with my mom for the majority of the time I've kind of forgotten about my vitamins. So I'll definitely look into checking my levels and starting to take them regularly again.

Thanks for all the sympathy and advice everyone.

If it's celiac disease you have then you are not "allergic" to gluten and you will not ever outgrow it or be able to stop being gluten free safely. Celiac is an auto-immune reaction to gluten, not an allergy. I know this may be hard since you are not living with your dad anymore but can you try to get a copy of the tests that were run and the results? If you know the docotr's name and numebr still you can also just try callign them and ask. By law they have to give you a copy. They will either fax it or mail it of you are not able to go in and get it. It will help you if when you go to talk to the dr with your mom that you go armed with as much knowledge as possible. If you can find out the tests you also post them here and we can help you figure out if you were tested for an allergy or if you were tested for celiac disease. They are two different things. I hope the doctor your mom takes you to is knowledgable about celiac disease. Not many docotrs are.

[Kre8sioN]

Damn dude, I feel ya. Just remember youre way ahead of some like me. self diagnose a few weeks ago after 8 months of pain and misdiagnose. there were times when I couldnt even look people in the eye because I felt like a zombie. My doctor is just starting to accept Im celiac, and gluten intolerance, and just found out today lactose / casein as well. I stopped everything and feeling a bit week (lack of calcium, and other stuff) even though I have been taking multi vitamin. Body needs to adjust. You said "top of the world" dont think that it wont happen again. at 37 a year ago I was there, doing well and taking care of family. depression set in when I thought i couldnt do it anymore but everytime I realize i have to do something to make myself feel better I do it. My first gluten test is next tuesday, not sure how it will turn out because i stopped all gluten intake weeks ago. Long story short.. Get a hold of things, talk to your doctor, trust your instincts, take a multi vitamin because it just cant hurt, and do research!! My mother has been very helpfull and understanding, but my boss and some friends look at me like "what the hecks the matter with you" - ignore this, and take care of yourself buddy, its kinda hard for us caring type.

[annegirl]

Hey there,

Sorry you're feeling so awful. I know it sucks and makes school really hard. I've been there.

You might also check into limiting or eliminating soy. I have slowly realized that I have just as bad a reaction to soy as I do to gluten. It's pretty tough to eliminate, but if it is your problem it's totally worth it!

Good luck and hang in there!

[Jack V]

Glutenfreemanna: No I do not know whether I'm allergic to gluten or actually have celiac disease. I don't really think it's worth the trouble finding out, I'm going to stay away from gluten and try to treat whatever symptons are still present.

UPDATE: I'm having that "on-top-of-the-world" feeling again. The pimples on my nose have cleared up(coincidence maybe?). Knee pain is diminishing, was on a trampoline yestarday though so a bit aggitated. My eczema on my right hand is clearing up, and the acute eczema on my face as well. My energy levels are great. Farts still smell rancid and I'm going to work on that, although not as bad as before. I left this topic to sit for a while because it's discouraging taking this long to start feeling good again. I've been trying to be extremely healthy lately and it seems to be working. I'm also taking precautions which I didn't before such as not eating foods off my barbeque or oven. I'm still staying out of the cafeteria at my school. Staying away from sugar. No junk food. I don't let me mom cook for me anymore, she's very diligent but idk, she's glutened me on several occasions, and I like being assured I know what I'm eating.

Me and my mom have had a few arguements on why I'm feeling like this. She thinks it's because im malnourishing myself. I tell her that may be, but it would be from having an unhealthy gut. During one of these arguements she told me "you know people don't always feel good, I go to work a lot not feeling the best". I told her I'm not going to settle for what she had. She still hasn't taken me too the doctor, she's very busy. I dont really care to go though, doubt it would help, a herbalist maybe, but not a doctor.

With a little bit of reading I now believe that gluten does effect me, however I think my main problem has been Leaky Gut Syndrome, which can coincide in people that have Celiac Disease and Lactose allergy. (VERY INTERESTING SITE:Open Original Shared Link I think this site should be a link somewhere, very helpful information). I believe once I take proceders towards healing my gut the rest of my problems will go away.

An update on my calculus:100% on unit final... don't like to brag though... oh wait yah I do, top of class WOOT With my concentration problems I think this is not too shabby but I think that problem will soon be gone.

Thanks everyone for your support. I'll probably update this again later, if I keep feeling good.

[srall]

Jack, I am so glad you are feeling better and that your symptoms are clearing up. As a mom, I am so impressed that you are taking the steps on your own to improve and manage your health. (I hope that did not come across condescending...I hope my celiac daughter is as conscientious when she's your age.)

I used to have the same attitude as your mom...people just don't always feel good. I spent at least 7 years of my life operating at about 60% wellness until my complete diet and lifestyle overhaul. I blamed having a baby, life, getting older. Truth is, if we are eating correctly, taking vitamins, exercising and sleeping, we truly can feel great. I am now 43 and on my good days I feel 20. But that's when I'm really eating the way I'm supposed to, getting sleep, and taking vitamins. Oh...and exercise. It's a formula that takes a lot of effort but it really works.

You are so lucky to have figured this all out at a young age. I can't think of anything sadder than spending your lovely teenage years and 20's feeling crappy and depressed only to discover much later that it didn't have to be that way. Good luck on the journey!

[MelindaLee]

Jack,

I hope your mom can learn to support you! I feel bad for you...my whole house went gluten-free because I am celiac, dx 9 mos ago, and they all eat just fine! Mom just need to learn to help you, and maybe, she would feel better, too! (If you are celiac most likely one of your parents are too!)

You noted something about acne in one of your posts. Both of my ds get acne when they are exposed to gluten. That is my oldest son's primary symptom. I don't think it's a coincidence.

You need to know you sound like an amazing young man. You are taking a lot of responsibility for your own health, despite your mom's position. I would be proud to have you for a son! You should be proud of yourself! I believe you will go far in this world. You are obviously commited to getting good grades and willing to work hard.

I truly believe your difficulty concentrating will improve with your diet, as well. I get very "foggy" when I am exposed to gluten. It will take days for these feeling to go away.

Keep up the great work! Maybe suggest some foods mom could buy for you. I found Thai Kitchen has gluten free instant noodle type dishes similar to ramen noodles. They are labeled gluten-free. Or maybe she can buy you some glutino pizza's and such. Just bake them on a pan with tin foil to protect you from any gluten that was previously on the pan. You could even get your own toaster oven big enough for a frozen pizza. This could be where you bake your things and NO ONE else uses it!

Best wishes!