Just Hear Me Out, K?

[conniebky]

So I had my blood tests, I don't have celiac disease.

My doctor told me to eat some gluten and see what happens, which really is good advise, but that's just my opinion.

So two weekends ago I was babysitting and I made fish sticks and white corn on the cob and broccoli - my favorite dinner of all time.

Nothing happened. Nothing, nothing, nothing, matter of fact, I felt better than I had for months. So, I say, ok, I don't have a gluten problem.

Then I made macaroni salad and ate that for two days in a row (with regular pasta) because I thought, ok, gluten's not the issue. Then my stomach turned into a demon from you know where. So I dealt with all that, but it wouldn't stop. Friday morning, I got up and had a panic attack that woulda stopped Al Capone in his tracks. I couldn't GO TO WORK! The very thought of leaving the house terrified me. I stayed in my bed all day - remember, I quit eating gluten what - 4-6 weeks ago? Maybe I ate too much? Maybe I freaked myself out?

I know that gluten can cause neuro troubles, but can it also cause head troubles? Friday and Saturday, I was terrified out of my mind. Yesterday I made myself go to the store and walk around. I bought some new pants and 2 new shirts and some cute shoes but I was sweating like a pig the whole time I was in there.

Today I felt better, so did my stomach. How much research has been done/is being done about gluten? Are they working on a "pill", a "cure" - my mom is lactose intolerant, they have that Lactaid pill, which does NOTHING for her, she chews one up before she takes her medicine cuz God only knows what's in medicine.

My birthday is on Wednesday and we're going to a Red Lobster, then my friends from high school are having a Fourth of July party.....I don't know why I have always been a strong, strong, self sufficient, intelligent, interesting, funny, loving, comforting woman and have turned into a big ol' weenie. I'm very upset about it, I can't figure it out, my hormones are supposed to be something like 22 and mine are 3. Doc said that's no big deal....one of my friends said maybe I'm just getting old and nervous. I told her "well, thank you, you're old, too"..... I don't know how much if any research is being done about this whole gluten thing, I never see people wearing gluten ribbons.....

[txplowgirl]

Connie, a lot of people on here have had negative tests but still react to gluten. Sounds to me like you are gluten intolerant. Quit eating gluten or you're going to make yourself really sick.

[runningcrazy]

Connie, a lot of people on here have had negative tests but still react to gluten. Sounds to me like you are gluten intolerant. Quit eating gluten or you're going to make yourself really sick.

Totally agree. I had 3 negative blood results and I went gluten free anyway and all my horrible issues were gone. We finally tested thru enterolab, so that is an option too if you need more assurance. But I would save your money and just realize that there is a problem and gluten free for life could fix it. Sure its a hassle but its a heck of a lot better than the suffering I had before!

[jerseyangel]

Yep--I agree. The best test is how your body reacts--not getting sick with the first meal isn't all that uncommon. In many cases, the effect is cumulative. It catches up with you.

[Mari]

Well something sure happened - were you gluten free for a while and avoiding some other foods? When a person is gluten-free the lab tests may not be positive or in some people even if they eat gluten the tests may still not show elevated antibodies or tissue transglutaminase. Usually the DR has a person eating a small amount of gluten for a month or more before doing the tests. If you ask your Dr for your lab results we may be able to give you some advice.

So the tests were negative but if you had been gluten-free it takes a while and a constant challange of gluten to raise the level so you react noticealby or turn the blood tests positive. You had a small challenge when you ate the fish sticks then more and more gluten with the macoroni so your antibodys levels rose. It may have been the gluten but also consider the corn. Last time I tried I could eat corn occasionally but if I ate repeated doses I would react. One of my friends stopped eating corn and her chronic fatigue syndrome got much better and going gluten-free did not improve her problem.

[ravenwoodglass]

Connie, What you did was a gluten challenge and it was positive. You now know for sure that gluten is something you have to avoid. I am also a blood test negative celiac and trusting those blood tests almost cost me my life and certainly destroyed my quality of life and my childrens.

The neuro symptoms you are describing are all to familiar to me. and many others. I got gluten a week or so ago. Unfortunately it was also my last week at my Math class. I could barely get myself to go to the last couple classes and to put it mildly I should have just stayed home as I couldn't concentrate at all and almost failed the last exam. I was so anxious I came close to crying in my instructors office and almost left without taking the exam. I also have PTSD and the horrible nightmares came back full force and so bad that by last night I was afraid to go to sleep. I had to up my meds, which I hate to do as I had gotten down to a minimal does but at least I slept. I had the neuro symptoms for almost a week before the GI stuff woke me up in such pain that I took my cell phone into the bathroom with me in case I needed to call an ambulance. I guess what I am trying to say is your not alone. The anxiety you are feeling will pass as long as you stay away from the gluten. I know it isn't easy but just keep telling yourself that what you are feeling is temporary, that helps me a bit. If you have any antiaxiety meds don't be afraid to take them as long as you know they are gluten free. Your body and brain have clearly shown you that gluten is not something it wants in your system. Since you now know that glutenings will lead to severe anxiety attacks don't be shy about asking your doctor for a script to keep on hand for those times when you slip up. I do hope you are back to your normal self soon. Hang in there your not alone and we are here for you.

[kareng]

Connie, I don't know much about fishsticks but years ago I bought them a few times and they were coated with dried potato not much if any flour. Maybe you should just skip the gluten or be gluten lite. Don't purposely eat stuff with gluten, but don't sweat the microscopic crumb like some of us must.

[conniebky]

Connie, What you did was a gluten challenge and it was positive. You now know for sure that gluten is something you have to avoid.

The neuro symptoms you are describing are all to familiar to me. and many others. I got gluten a week or so ago. Unfortunately it was also my last week at my Math class. I could barely get myself to go to the last couple classes and to put it mildly I should have just stayed home as I couldn't concentrate at all and almost failed the last exam. I was so anxious I came close to crying in my instructors office and almost left without taking the exam. I also have PTSD and the nightmares came back full force and so bad that by last night I was afraid to go to sleep. I had to up my meds, which I hate to do but at least I slept. I had the neuro symptoms for almost a week before the GI stuff woke me up in such pain that I took my cell phone into the bathroom with me in case I needed to call an ambulance. I guess what I am trying to say is your not alone. The anxiety you are feeling will pass as long as you stay away from the gluten. I know it isn't easy but just keep telling yourself that what you are feeling is temporary, that helps me a bit. If you have any antiaxiety meds don't be afraid to take them as long as you know they are gluten free. Your body and brain have clearly shown you that gluten is not something it wants in your system. Since you now know that glutenings will lead to severe anxiety attacks don't be shy about asking your doctor for a script to keep on hand for those times when you slip up. I do hope you are back to your normal self soon. Hang in there your not alone and we are here for you.

I just love ya, raven....I don't see how eating macaroni can make you go mental. If it hadn't been for the GI issues along with it, I would have thought I had just gone mental. I do have a script for anxiety, but it kind of makes me grouchy when it wears off.....and I hate to take it, I guess I am just going to have to face it. At work, all the girls went to some place in the city where they make these $3.00 cupcakes and they were so pretty, but I didn't want one, but I .... it's a huge change in your life when you can't eat gluten, then think it's all in your head, then eat gluten, then go mental, then get sick, I really don't understand how eating some macaroni can make you afraid to leave your house. I mean, think about that...."I can't eat macaroni, cuz if I do, I'll be scared to leave my house"... that sounds like a B movie kind of thing.

that is a ridiculous notion to me..but you're right when you said Your body and brain have clearly shown you that gluten is not something it wants in your system.

But I'm a logical person, I only did good in math and science in school....my IQ is 143, averaged - one was 151 and one was 139 and one was something else....so how can eating macaroni turn me into an idiot who's afraid to walk outside? the whole thing is stupid to me, and I don't understand any of this.

I have PTSD too, from something really terribly bad that happened to me - and not about George passing, something that happened after he passed....And now when I eat macaroni I get aracnophia that's not the right word, that means fear of spiders, you know what I mean, fear of leaving the house, and I canNOT have aracnophia or whatever it is, I have people to support and have to go to work, I know that when my right leg goes numb so does my left pinky finger, that's when I know I'm eating something wrong. But, seriously? fear of leaving the house? from some macaroni?

[kareng]

It does sound ridiculous. But the alternative is that you have really lost your mind. However, I remember reading about people with severe mental issues in an institution. They put them on a gluten-free diet and the majority did much better. Can't site it but I found it once, you could probably google it.

[Coinkey]

I just love ya, raven....I don't see how eating macaroni can make you go mental. If it hadn't been for the GI issues along with it, I would have thought I had just gone mental. I do have a script for anxiety, but it kind of makes me grouchy when it wears off.....and I hate to take it, I guess I am just going to have to face it. At work, all the girls went to some place in the city where they make these $3.00 cupcakes and they were so pretty, but I didn't want one, but I .... it's a huge change in your life when you can't eat gluten, then think it's all in your head, then eat gluten, then go mental, then get sick, I really don't understand how eating some macaroni can make you afraid to leave your house. I mean, think about that...."I can't eat macaroni, cuz if I do, I'll be scared to leave my house"... that sounds like a B movie kind of thing.

that is a ridiculous notion to me..but you're right when you said Your body and brain have clearly shown you that gluten is not something it wants in your system.

But I'm a logical person, I only did good in math and science in school....my IQ is 143, averaged - one was 151 and one was 139 and one was something else....so how can eating macaroni turn me into an idiot who's afraid to walk outside? the whole thing is stupid to me, and I don't understand any of this.

I have PTSD too, from something really terribly bad that happened to me - and not about George passing, something that happened after he passed....And now when I eat macaroni I get aracnophia that's not the right word, that means fear of spiders, you know what I mean, fear of leaving the house, and I canNOT have aracnophia or whatever it is, I have people to support and have to go to work, I know that when my right leg goes numb so does my left pinky finger, that's when I know I'm eating something wrong. But, seriously? fear of leaving the house? from some macaroni?

Yep, the fun neuro reaction. For the past few years I've been getting extremely anxious, and basically freak out when I'm surrounded by too many people (like in a mall, a packed bus etc) then I skip the gluten and somehow, I'm quite fine being on a packed bus and enjoy going to the mall again and I LIKE people. The last time I ate wings that were deep fried at a pub (so every breaded thing goes in that fryer), I got depression and started thinking that suicide was a great idea. Now the symptoms are gone and I cannot believe that gluten would make me suicidal. Agoraphobia is the phobia you are talking about and yes, start believing it, macaroni did it.

[GlutenFreeManna]

Connie, others have given you great advice here that I agree with very much, so I won't repeat what they said. I will just say that yes, research is showing more and more each day that gluten leads to neurological problems (anxiety can be caused by neurological problems). I don't have an article on anxiety and gluten, but I was just reading one the other day about gluten and dementia (which is interesting to me because almost all my grandmothers' sisters have died of dementia and now my grandmother is developing it). Anyway, this article explains very clearly how what you eat can affect how your brain works. It also discusses seizures and neuropathy. What you are experiencing with the tingling in your legs and your little finger is most likely neuropathy--I had that as well as shaky hands and weakness in my hands (I couldn't even open a bottle of water on my own some days). I was also more afraid of things that never frightened me before--like bugs (I have arachnaphobia for sure when I'm glutened, but I used to be an avid camper and bugs never bothered me prior to becoming gluten sensitive). The word you were searching for is agoraphobia--fear of public spaces. I used to walk into a store and start having difficulty breathing if it was too crowded. I thought that I was having an asthma attack, but oddly I have had none of these attacks since going gluten free. The more I read here the more I figured out I was having panic attacks. But I'm fine if I don't have gluten.

Here is the article for you to read: Open Original Shared Link

Reading this helped me understand a lot more about how eating affects my brain as well as my whole body. So I hope you will take the time to read it and really think about your decision to keep eating gluten.

[Jestgar]

....so how can eating macaroni turn me into an idiot who's afraid to walk outside? the whole thing is stupid to me, and I don't understand any of this.

Your brain runs on chemicals. Gluten makes different chemicals happen. Your brain doesn't know what to do with those chemicals and it does what it thinks is best, which is make you nutsoid for a while.

[GFinDC]

Hey Connie,

You can do a search on gluten and schizophrenia and find some info on that connection. not saying you have that of course, but there is a link to some mental conditions. Also, they say that gluten can affect the brain like an opiate. So that's another possible link to the symptoms. The gluten withdrawal affect some people experience could be caused by that opiate like affect. Gluten ataxia is another condition caused by gluten's affects on the brain.

If the gluten (gliaden protein) gets past the intestinal lining and into the blood stream, it can end up anywhere in the body. So it can affect any part of the body, including the brain. Scary stuff.

[Skylark]

Connie, I had full-on bipolar illness from all the awful things gluten did to my body and brain. Trust me, a bowl of macaroni can totally make you go mental!

Nowadays I get these weird mini-panic attacks now when I eat gluten by mistake. I'll be sitting in my chair working on something, and suddenly out of nowhere I feel this adrenaline rush, my heart pounds, and I get all anxious. Sometimes I wake up from a sound sleep at 4 am with a start, heart pounding, worried half to death about something totally stupid like whether I forgot to pay a bill or left a door unlocked. I hate to think what I'd feel like if I ate a whole bowl of macaroni. I'd probably end up in bed, like you did.

By the way, don't go to Red Lobster. Last time I checked they put flour on EVERYTHING before they cook it.

[ravenwoodglass]

I have PTSD too, from something really terribly bad that happened to me - and not about George passing, something that happened after he passed....And now when I eat macaroni I get aracnophia that's not the right word, that means fear of spiders, you know what I mean, fear of leaving the house, and I canNOT have aracnophia or whatever it is, I have people to support and have to go to work, I know that when my right leg goes numb so does my left pinky finger, that's when I know I'm eating something wrong. But, seriously? fear of leaving the house? from some macaroni?

Connie the word is agoraphobia. I have been fighting it now for the last year and a half. It hit the worst after I was diagnosed, although I had it before then, but the gluten issue acutally made it worse because I was so fearful of accidents on top of being afraid of people in general. Mine came from abuse in childhood that continued on after becoming an adult. Long story but anyway mine progressed to the point where I at first wouldn't leave my house, started working over the computer and told myself for years that it was my choice but eventually I couldn't even go into my own back yard and when it got to the point where I couldn't even go into the upstairs at my house I finally got some help. Being glutened brings it back full force, hence the issues I had with going to class. Since this is something that has escalated for you with the glutening it should get better soon. If it doesn't please don't hesitate to see someone about it. It has been a process for me but I can now take my dog for a walk at the lake where all the dogs have to be on a leash, I have gone to a couple movies and was able to go back to college. I couldn't have done any of that without the help of my therapist and psychiatrist. If things don't get better for you soon please get help sooner rather than later. No matter how smart we are there are some things we just can't do on our own. It doesn't make us weak as seeking help requires more strength than giving into our fears.

Issues with the brain from gluten can come from multiple causes. Not only do the antibodies have the ability to take up a homefront there, even causeing lesions that can effect thinking, mood and movement but for some of us we can get edema that causes swelling not just in the fingers, legs etc but also in the brain. I have two pairs of glasses, one for my unglutened eyes and one that I wear when glutened because the edema even effects my vision. This can happen to some women when they get preggers to which causes them to have blurry vision.

The good thing is that once the antibodies have left your system again things should normalize in your brain. If you should have after effects, which is posssible since you have been diagnosed with PTSD do seek help for it. Don't wait as it just gets worse if you do.

[bigbird16]

Connie, the mental issues I had were something I couldn't imagine were gluten-related...until they went away when I went gluten-free. My friends considered me a nutcase. I cried a lot over stupid things (e.g., a lid that won't fit back onto a jar of pickles), over imagined scenarios, over steps I couldn't get in dance classes because I couldn't think clearly enough to understand the patterns, etc. The issues didn't go away overnight, but little by little, I seemed to be able to cope better. It doesn't take much gluten to send me down the rabbit hole again. The way for me to stay out of that insanity is to avoid gluten. So yes, gluten can make your brain all kinds of crazy.

Be well!

[frieze]

Connie, think of it this way, it is not a mental health issue, but a physical health issue. The gluten is attacking your brain so that it can not function in a proper way. You need to exclude it, to preserve your neuro function.

[lucia]

Connie,

On the positive side, at least you're now legitimately a forum member :) I mean that in the best way, and we're glad to have you back!

Besides that though, isn't it amazing to think that cutting out gluten can cure you of your anxiety? I've suffered inexplicable anxiety too, which I now realize was related to gluten. It's a relief to know I'm not shackled to it for the rest of my life.

lucia

[AlysounRI]

Connie:

For as many people are properly diagnosed with celiac disease, there are (from the things that I have read) about 15-20 million more people with gluten intolerance, with no damage to their villi but suffering from the same effects.

If you know that you can't handle gluten then you must give up for health reasons. I asked a question here last month or so (to paraphrase) whether those with gluten intolerance will suffer the same potential fatal illnesses to which proper celiacs are prone. Most people seem to have agreed that it was quite possible though I doubt there is any to much research on that.

It's no less of a toxin to gluten intolerants than it is to celiacs!!

If you feel better off of it, then off of it you must be.

And it must be a change for life.

[mommida]

Connie,

Gluten can cause different types of reactions. Allergy, intolerance, and the mystery/theory of T-cell or mast cell reactions.

Filling out the forms for my kids there is always a check box of symptoms of the allergy/intolerance. Anxiety is a known and recognized reaction.

Celiacs and others on a gluten free diet should be supplementing with vitamin B12. (gluten free foods seem to have lesser amounts of B 12, damage cause malabsorbtion problems, pernicious anemia often is connected with Celiac, etc.)

I gots to get me some of that duct tape box wine!

[kwylee]

Please don't give up on this. I have not been diagnosed with celiac disease either, and 7 years ago, when I started having sporadic "vertigo", dizziness, anxiety, blurred vision, feelings of dread and fear (all totally uncharacteristic of my usually bold self), I consulted a neurologist who concluded nothing major was wrong with me. After all, I was told, vertigo was a "mystery illness". Somewhere around that time I had an (Company Name Removed - They Spammed This Forum and are Banned) blood test designed to show which of the 150 foods tested, would react to my blood. Those results showed I was totally non-reactive to gluten and casein.

Just a couple of months ago I decided to shell out the money for a stool test from Entero Lab, and there it was. I am genetically sensitive to gluten and sensitive to casein. Meaning that the gluten sensitivity was present in my system years before, but the blood test had told me otherwise.

[kwylee]

Please don't give up on this. I have not been diagnosed with celiac disease either, and 7 years ago, when I started having sporadic "vertigo", dizziness, anxiety, blurred vision, feelings of dread and fear (all totally uncharacteristic of my usually bold self), I consulted a neurologist who concluded nothing major was wrong with me. After all, I was told, vertigo was a "mystery illness". Somewhere around that time I had an (Company Name Removed - They Spammed This Forum and are Banned) blood test designed to show which of the 150 foods tested, would react to my blood. Those results showed I was totally non-reactive to gluten and casein.

Just a couple of months ago I decided to shell out the money for a stool test from Entero Lab, and there it was. I am genetically sensitive to gluten and sensitive to casein. Meaning that the gluten sensitivity was present in my system years before, but the blood test had told me otherwise.

Yes, needless to say, I don't have nice things to say about the company whose name was removed due to their spamming this site. I'd feel awful if I ran a business that gave people misinformation!!!!!

[missy'smom]

Connie, as others have mentioned, there is a well documented connection between gluten, even other allergens and certain mental health disorders, going back a long time. Sorry, I've had a long day and don't have handy links. It's not hard to find if you plug in some words that others have mentioned. I don't share this often, but I know that this is one place where people get it , my mother was institutionalized when I was young, as was her mother. Undiagnosed celiac disease clearly runs strong and mean in my family for more reasons than I have space in this post. My mom had obvious serious health issues which her doc. conveniently ignores and labels as "all in her head". Even her current caregivers have tried to get her to go gluten-free without Doc orders. As you have seen with this thread and I have seen over the yaers of being here as well as my own experience and the reasearch that is out there, it is clear that gluten can mess with your head, add in all the experiences of parents with autistic kids who have improved on a gluten-free diet and it's not so hard to believe. I know it feels like we are fish out of water much of the time and like we live in an alternate universe, it's hard to believe that we are the ones who are in our right minds and know the real truth. It takes a strong person to stay the coarse sometimes.

Edited to add:

I kid you not, before going gluten-free, I had a serious conversation with my husband and asked him to promise that if it got to that point that he would not have me committed and keep me home and take care of me because I felt like I was starting down a road that would lead me to where my mother had gone. I've got 5 years to make it to the age where she was when she was taken from us and I tell ya, Ill be celebrating!