Questions?!

[lax87]

Ok im a 16 your old male who was diognosed when i was 15. Ever since then i feel like i have not been the same. I become irritated,angry,sad,anxious, i have a hard time sleeping sometimes and i also have thoughts that bother me when i have been in something with wheat, it really tends to bother me. Now ive tried to be the best with the diet but i have gotten into it due to people telling me there is no wheat or gluten in the product or food and i find out there is or my parents not reading the ingredients clearly. I just hate feeling like this and feel like it gets better then it all comes back, i feel like its effecting me with my friends and meeting new people also. I have a cousin who has gone through almost the same symptoms they diognosed him as crazy. He was put on medication, but nothing worked. After 5 celiac test they finaly admitted he was indeed celiac and now he's perfectly fine when he does not get into it. I to have seen a counciler because of this and she also stated that i was not crazy and that it was caused by the wheat allergy, and the stress braught on by it. has anyone had these symptoms before is what i wanna know and what has helped you get your mind off of them?

thank you to whoever reads this and tries to help

Marco

[Nantzie]

Absolutely 100% YES.

It's not the pain or the GI symptoms that keep me on the diet. It's that I don't want to go through feeling like that psychologically. If it wasn't for feeling "irritated, sad, angry, anxious" (which is an excellent description of how I feel when glutened even by cross contamination, btw), I probably wouldn't be as careful as I am about avoiding gluten.

Maybe your parents can come on this board and ask any questions they have. A lot of people outside the "celiac experience" don't know about all the ways this effects people. I'm sure they could use some information and support as much as you do.

I'm glad you found us here.

Nancy

[CarlaB]

Welcome!

Your symptoms are most likely from the gluten. You need to be very careful about what goes into your mouth ... you need to read the labels and educate your friends and your parents. No one else will have the motivation to get even the small crumbs out of your life. It's tough getting to be 100% gluten-free, but you can do it. I'd go through every food with your mom every night before you eat it ... find out what's in it yourself. I'd take my lunch to school, if you're not already.

Read posts around her about getting 100% gluten-free ... you will feel so much better mentally and physically.

[lax87]

you guys have no idea how happy and releaved it makes me feel knowing that it isnt only me that other people have the same symptoms as i do....it just really scary when the symptoms come on becayse ive never felt like that until a year ago and its just been hard. im also curious do u have any thoughts when u get into wheat or gluten? and yes i will check into how to get 100% gluten free asap when i did that for a month i felt like my old self and was really happy. thank you so much i have no idea how to thank u and everyone that will reply later on to help me out

can someone please help me with a link to how to keep 100% gluten free and maybe a list of all safe foods, drink,shampoos, ect that is gluten and wheat free.

[tarnalberry]

yep, gluten can cause neuro sypmtoms, and mood issues. you definitely need to get all gluten out of your diet, and hopefully your parents will start cooperating more on that.

[aikiducky]

I feel just like that as well if I get some gluten by accident! If your parents have a hard time believing you, please ask them to read this thread.

I don't even get very bad tummy aches or anything, but I feel absolutely horrible if I get gluten, sad and anxious and depressed and angry, my head gets really mixed up. I hate feeling like that, and I'm really careful not have gluten accidents because of that.

If you look at the parent site of this board, celiac.com, you can find lists of safe and forbidden ingredients. Also if you keep reading this board, people often discuss new products and old products tthat maybe have a change of ingredients.

The best thing to do is really to learn how to read labels yourself so your not dependent on anyone else doing it for you. AND REMEMBER, IF YOU'RE NOT SURE SOMETHING IS GLUTEN FREE, DON'T EAT IT! It's a pain sometimes, but it's always better to be safe than sorry with this disease. I never ever eat something that other people offer me unless I can check for myself that it's gluten free, and I know for sure that person knows how to avoid cross contamination.

Pauliina

[lax87]

yeah its just a very scary thing.....im also curious i know things like scytzophrenia and depression are traits of it but can people get phychotic thoughts or anything worse due to it?

[jerseyangel]

Hi Marco,

I get anxiety, dark moods, and parinoia when glutened. Actually, as time goes on, my GI issues are easier to deal with than the neuro symptoms.

Just a trace of CC will set me off, so it's very important for you and your parents to be viligent about keeping you gluten-free.

[lax87]

yeah ive tried to be vigillent about the hole thing but its difficult sometimes when its either eat and be sure or starve. Im still curious is there is any phychotic episodes or other things people may have with the symptoms.

[annacsmom]

First, welcome. I know you will find the help and support here on these forums. As far as the symptoms, I know that severe panic and anxiety attacks are also symptoms. Depression is all too common. Whatever you are experiencing, it is probably due to being glutened since you have had times of feeling well. I hope that you become completely gluten free very soon. I know it's very overwhelming at first, but it will get better. In the meantime hang in there, and maybe you can find a celiac support group in your area.

[lax87]

thanks you everyone for your support and info but i am still trying to find where and how to become 100% gluten free

[annacsmom]

thanks you everyone for your support and info but i am still trying to find where and how to become 100% gluten free

For starters, go to the site index on this website and print out the Safe and Forbidden Lists. This is a great resource. Also, I purchased the book "Celiac Disease - a Hidden Epidemic" by Peter Greene. Also, I know there is a Celiac for Dummies Book, which I assume is a good overall look at celiac. Maybe check it out on Amazon for some reviews. Also, I periodically go over the product and ingredient forum, the labeling forum, etc. for some very valuable information. You can find out all about shampoos, soaps, personal care products, etc. And of course, always ask specific product questions yourself. Everyone on this site has a wealth of information and always answers questions promptly. Good luck and feel free to ask!! My 18 yr. old daughter was diagnosed two weeks before going away to college. Talk about a crash course in Celiac!

[ArtGirl]

thanks you everyone for your support and info but i am still trying to find where and how to become 100% gluten free

The forum member, Nini, has a Newbie Survival Kit on her website. Go check it out and print out the information there to read and keep with you when you/your mother shops.

Open Original Shared Link

It took me about three months to learn enough to be 100% gluten free. For the first two weeks when I found this forum I spent at least four hours a day reading new and old posts. The learning curve can be steep when you emerse yourself in this forum. I have copied and printed tons of information that members have shared - both what is and what is not gluten-free. Lately I've even had the courage to call or email food manufacturers about their ingredients when I didn't know for sure.

I think its great that you've found out about your Celiac at 15 yrs - and not had to go for years and years undiagnosed and getting sicker and sicker. You now have the prospect of a long and healthy life ahead of you.

[Lisa]

Hey Marco:

I want you to go to the members list here and click on to "nini", she has a great beginners post that will be very helpful to you.

I am would like to request anyone who can post gluten free snack foods FOR A 16 YEAR OLD, so he can feel normal again.

Fast food are pretty much out for you Marco. But there is still much for you to enjoy.

These are a few things off the top of my head:

Lays Stacks

Some Doritos (read the ingredients... if it says Wheat, put it back and choose another that does not)

M&M

Poppycock - Original

Fritos - non flavored

Most of all Paul Newmans Salsas

Tostatoes Chips (all required to list wheat)

Well, these are just a few and there are many many more.

Others will post and help you out. Keep reading here, it's a great resourse for you.

You can PM me also.

Hang in there, and ask away

[kbtoyssni]

My worst symptoms from gluten were psychological, too. I've been gluten free for over a year now and it doesn't bother me that I wasted 10 years feeling sick, but it does bother me that I waste 10 years feeling depressed. When I get glutened now there's nothing I can do about it. I just have to wait it out. So I make sure that I read every label before I eat anything. If I'm not sure (even if it's something that I'm 99% sure is gluten-free), I won't eat it. I keep enough gluten-free food around at work, in my car, at my friends' houses that it's not like I'll starve. And I would rather go hungry than deal with the side effects. It's up to you to be in charge of your diet. It looks like you will have to work with your parents to make sure you're gluten-free. Maybe you can go shopping with your mum, help her plan dinners, suggest gluten-free options for the whole family when possible, get your own condiments because it's just too easy for them to get contaminated.

Most personal care products you just have to read the label and it will list the gluten. Personal care products usually aren't as ambiguous as food can be with things like "modified food starch". The gluten is usually pretty obvious.

[Nantzie]

I have heard several times of there being a possible link to some types of schizophrenia and gluten. My grandmother had schizophrenia. The interesting thing here is that she also "thought" she was allergic to all kinds of food. I remember my mom telling me about these gross cookies that her mom used to eat called "digestives". Imagine my surprise finding some gluten-free cookies a few months ago called "digestives".

I'll bet anything now that grandma had celiac. Unfortunately my mom and my grandma have passed away, so I don't have any way of finding out more about it.

Here's an article I found - Open Original Shared Link

Eating 100% gluten free does have a learning curve to it. It takes a few months to really feel comfortable with your knowledge of it.

A good way to go about it is to start with completely plain and unseasoned meats, veggies, fruits, potatoes and rice.

Basic seasonings like salt, pepper, oils, butter and margarine are gluten-free.

McCormick spices, seasonings and seasoning packets will clearly say in plain English if there is gluten in it. They won't hide it in a phrase like "natural flavorings". They also won't call it by an unpronouncable chemical or latin name. I use McCormick Taco Seasoning packets all the time.

Kraft companies will also clearly disclose any gluten, as will Con-Agra. You'd be surprised as you learn to read labels on everything how many foods are actually Kraft or Con-Agra.

It's hard to give you a list of what is and isn't gluten-free just because once you know what you're doing, there really are tons of things to eat. So it just depends on what you eat, what you miss and what you're craving.

Nancy

[lax87]

has anything like phycosis or phycotic thinking ever been a symptom of gluten intolerance?

[Lisa]

has anything like phycosis or phycotic thinking ever been a symptom of gluten intolerance?

Depression is a biggie!

[lax87]

so tonight i went out to eat with somefriends for dinner at outback which has a gluten free menu....after 10 minutes of eating i felt like i could vomit which tells me the food wasnt gluten free....so im expecting to get sick both physicly and mentally soon but im hoping it was just my acid reflect instead

[GFBetsy]

Ok im a 16 your old male who was diognosed when i was 15. Ever since then i feel like i have not been the same. I become irritated,angry,sad,anxious, i have a hard time sleeping sometimes and i also have thoughts that bother me when i have been in something with wheat, it really tends to bother me. Now ive tried to be the best with the diet but i have gotten into it due to people telling me there is no wheat or gluten in the product or food and i find out there is or my parents not reading the ingredients clearly. I just hate feeling like this and feel like it gets better then it all comes back, i feel like its effecting me with my friends and meeting new people also. I have a cousin who has gone through almost the same symptoms they diognosed him as crazy. He was put on medication, but nothing worked. After 5 celiac test they finaly admitted he was indeed celiac and now he's perfectly fine when he does not get into it. I to have seen a counciler because of this and she also stated that i was not crazy and that it was caused by the wheat allergy, and the stress braught on by it. has anyone had these symptoms before is what i wanna know and what has helped you get your mind off of them?

thank you to whoever reads this and tries to help

Marco

Marco -

I haven't read most of this thread, so please forgive me if I am repeating something that was already stated. There were two lines in your post that jumped out at me. The first was:

I become irritated,angry,sad,anxious, i have a hard time sleeping sometimes and i also have thoughts that bother me when i have been in something with wheat, it really tends to bother me.

The second was:

I to have seen a counciler because of this and she also stated that i was not crazy and that it was caused by the wheat allergy, and the stress braught on by it. has anyone had these symptoms before is what i wanna know and what has helped you get your mind off of them?

It sounds to me like you are saying that when you eat gluten, you have unwanted thoughts invade your mind that you cannot get rid of. This sounds a lot like OCD (Obsessive Compulsive Disorder).

OCD is actually an anxiety disorder. People with OCD have obsessions (unwanted, intrusive thoughts) that cause them great anxiety. Some people worry that they have a disease that they will pass on to unsuspecting family members. Others worry that they left something important undone and that bad things will happen because of their mistake. These anxieties lead people with OCD to go through compulsive behaviors or rituals in order to decrease the anxiety caused by the obsession. People who worry about germs often wash their hands repeatedly. People who worry they have left things undone spend a lot of time going back and checking things (locks, stoves, etc.) over and over again to be SURE that they really DID lock the door or turn off the stove.

Most people with OCD look at their worries/obsessions and think "This is bizarre! Why am I even worried about this?!?" but they still can't stop the thoughts from intruding.

Now, many of the people on this board will tell you that gluten causes them to suffer from depression and/or anxiety. If you are suffering from OCD symptoms, it is quite likely that gluten IS causing them. At the very least, gluten can cause your general anxiety/stress levels to elevate, which can kick in the stronger anxieties of OCD.

If this sounds like what you are experiencing, look a little more into OCD. There are medications that can be prescribed to help decrease those unwanted thoughts, and there are also Behavior Modification workbooks you can buy and use that can help you learn how to defeat those worries without medication. It also sounds like staying gluten free will also be a big help to you.

Start reading labels on your own to make sure that the foods you are eating truly are gluten free . . . you'll be moving out to go to college or get a job on your own in a couple of years, and it will be easier to deal with your diet then if you start now. Help your mom make dinner a couple of times a week. She may think you've been replaced by a pod person, but she'll be grateful! And you will really impress the girls you meet later in life when you offer to cook a fabulous dinner for them!

If you decide you'd like to do some more in-depth reading on OCD, send me a PM. I'll send you the names of some of the best books I've found on the subject.

Good luck!

Betsy

Edited to say: I just scanned the rest of the thread and noticed that you are very concerned about what you call "psychotic thoughts." There are 4 main groups of obsessive thoughts among those with OCD: Germs/Cleanliness, Religious Doubts/concerns, Sexual thoughts, and thoughts about harming others. People who have thoughts about harming others often worry that they will stab their family members with knives, envision themselves swerving their car in order to kill several small children walking to school, or have sudden, violent "urges" to harm others in some other way.

The difference between the people who have "harm" obsessions with their OCD and the people who really are psychotic is that people with OCD are horrified by the thoughts that keep pushing their way into their heads. People with OCD are ashamed that they could ever even IMAGINE doing something so awful. They worry that they are crazy, because they are thinking about things that disgust them. People who are truly psychotic, on the other hand, enjoy their violent thoughts. They invite violent thoughts into their minds and dwell on them lovingly. People who eventually act out psychotic behaviors have generally spent a long time intentionally stimulating themselves with their thoughts of violence. People who act on psychotic thoughts LIKE their psychotic thoughts. People who have OCD, on the other hand, HATE the "psychotic" thoughts that invade their minds, but can't make them go away forever, no matter how hard they try.

People with OCD who suffer from harm obsessions do everything they can to avoid the thoughts that bother them so much. Those who are concerned that they might stab others stop cooking, even avoiding the kitchen completely so they won't envision themselves grabbing a paring knife and wounding someone. Those who think about running down innocent children drive blocks out of their way so they won't pass the elementary school.

Though they often describe their thoughts as "temptations" to commit awful actions, people with OCD don't really want to do the things they think about. They do everything they can to avoid the situations where their thoughts might come true. People who obsess that they might sexually abuse a child often refuse to touch children at all. They won't change diapers "just in case" they abuse the child. Their thoughts make them feel sick, but they can't drive them away, even though they try and try to make them leave.

But, as I stated before, OCD is nothing more than an anxiety disorder. Selective Seratonin Reuptake Inhibitors (like prozac, paxil, zoloft, etc.) can help drive away the thoughts. Behaviour Modification therapy, however, is probably the best long-term solution to the problem of OCD.

Hope this information is helpful.

[lax87]

that pretty much sums up how i feel when i get into wheat.....ill have to check my lacrosse bag multiple times to make sure i have everything or will make sure i have my wallet and phone in my pocket several times while driving...it gets really annoying but im sure going to look into those books..also stressfull situations such as fighting or something along those lines also brings it on or being bored sometimes may bring it on. i also tend to be very self concious and think low of myself also when i go through the symptoms.

[almostnrn]

Marco,

I don't have a lot to add here but I just wanted to let you know I hope you are feeling well soon. When I eat signifigant qualities of gluten my brain just locks up and I really have a hard time functioning. I go from a person with a huge vocabulary to a bumbling fool. There have been a few times I was actually concerned I was going to get lost driving a route that I go nearly every day. It is frightning to say the least, I understand. I hope the gluten-free diet helps you with the problems you are having and if they don't completly aleviate please continue to look into other alternatives as well. Good luck to you, you sound like a very nice young man...you must be, you play LAX! LOL

[lax87]

yeah when i as on the diet strictly for a month i was fine...also when i get into wheat i get chap lips and white spots on my nails which is a sign of gluten intolerance

[GFBetsy]

that pretty much sums up how i feel when i get into wheat.....ill have to check my lacrosse bag multiple times to make sure i have everything or will make sure i have my wallet and phone in my pocket several times while driving...it gets really annoying but im sure going to look into those books..also stressfull situations such as fighting or something along those lines also brings it on or being bored sometimes may bring it on. i also tend to be very self concious and think low of myself also when i go through the symptoms.

Feeling bad about yourself is not at all surprising, in the circumstances. You probably look at the things you feel compelled to do and think: "WHY do I have to do these things? What is wrong with me that I can't make myself ignore these senseless worries?" But it's really not your fault. Your brain is just misfiring . . . and that can happen to anyone!

In fact, studies have found that 1 - 2 percent of the population has OCD. (That's greater than the percentage of people who have celiac!) And most of the OCD research has happened in the last 30 years. Before that, scientists thought that OCD was the rarest "psychological disorder", because everyone who had it thought their feelings and behaviors were WEIRD, and so they hid their compulsive behaviors very well. When 20/20 did a show on OCD in the 80's, they asked people who thought they might have it to call a research center that was studying OCD. They thought they would have a couple hundred people call, and instead they had THOUSANDS.

So you are definitely not alone. In fact, I am related (by marriage and blood) to at least 4 people who have OCD . . . so I KNOW you aren't alone!

[debmidge]

Marco

Marco:

First I want to commend you for being self assured enough to come on this board and chat with us on a topic that is so personal and complex. At 16 sometimes a person still doesn't have "self awareness" to the point of being able to grasp complexities that can deter their lives.

My husband has celiac and not me; but I live it with him. My home is 99% gluten free (the only gluten here is maybe some of my frozen dinners, a loaf of fully wrapped whole wheat bread and maybe some breakfast cereal - these are all mine only).

Husband had severe depression before diagnosis; to the point of being suicidal. He cannot take anti depressants for other reasons. Anyway, he is OCD and a worrier to begin with. He still battles with depression but it's not as deep as prior to gluten-free.

Take a deep breath and realize that you control your destiny - it's all in your control and that's a good thing because you will continue gluten-free diet and eventually your mental state will improve over time (it can take months, sorry to say). Some people are not "happy go lucky" naturally so I am sure the mental glutening affects them harder; they are probably more cranky and have more reaction to their mood swings. A person's basic personality must be taken into consideration too. For example, my husband is a serious person so the depression made him a morose, morbid serious person.

If you feel that the thoughts are too overwhelming you'll need to have a talk with your doctor to see if an anti-depressant or mood stabilizer is good for you until you are totally gluten-free for a year or two. Sometimes bad thoughts are hard to shake.

So yes, you aren't wrong about having psychological problems from gluten.

This board is great to find ideas about gluten-free foods by brand name. Just start a thread and start asking questions. A good way to find if something you want to eat is gluten-free is to call the manufacturer, and of course, reading labels albeit time consuming will give you an immediate answer.

Don't trust everyone in restaurant situations that something is gluten-free...restaurants are "pot-shot" and unfortunately should be avoided when you first start gluten-free diet (as you have a lot of information coming at you from all directions right now and need to simplify your life while you begin your gluten-free lifestyle).

Hope to see you post again on board. Feel free to ask questions about anything.

D