How Can You Tell The Difference?

[MallysMama]

I have read so many posts on this website now - I'm starting to feel more informed. However, I have one - possibly convtroversial - question. How can you all tell the difference between being "glutened" and just having a sour stomach and diarrhea? It seems like so many people are questioning what it was they ate, when they were so careful, that caused them some time in the bathroom. Isn't it a possibility that it wasn't gluten at all - but just your body regulating itself and cleaning out your gut? My hubby isn't allergic to any foods...but he occasionally spends some "quality" time in the bathroom - occasionally with D (yeah - he's kind enough to share when his tummy turns inside out! ). He seems to be more "regular" than I am sometimes. Has anyone considered the possiblity that it's not something you ate - but just the fact that you've been recently diagnosed with Celiac...and your body is just taking time to heal and is still very sensitive to food? My mom told me that even after going on the diet, my body was so bad off that I was still not able to absorb any nutrients and had to be put on an IV system for a long time. Some people seem so afraid that they're allergic to so many more things and wondering about cross contamination all the time (even micro amounts that, to me, don't seem large enough to matter)...when maybe none of those are what's causing their symptoms. I'm sorry if I've offended - I don't mean to. I'm just not understanding all the cause for concern. I guess it's because today I wanted to test myself.... so I ate about 1/3 of my daughter's blueberry muffin and tasted some other things. This was about 6 hours ago - still no pains nor have I had to run to the bathroom. I don't understand why it's not affecting me (anymore) like it is everyone else. Is the problem with me - have I become "desensitized" to the effects of gluten? Or are other people just so new that their intestines need more time to heal before their reactions to food lessen? Any insights?

[frenchiemama]

I can easily tell because:

I get hot and sweaty

I get very, very sleepy

I get dizzy

I break out in a rash and sometimes hives

I get forgetful, to the point that I lock myself out of the house or forget where I am going in the car

(I have been gluten-free for nearly a year)

ETA:

I have DH, and since about 5 months gluten-free, the ONLY time my DH acts up is when I've been glutened. It happens within just a couple of hours.

[Mr J]

firstly i'm not celiac, but gluten nerve damaged. Secondly everyone is different. A few months ago i unwittingly started to consume very small quantities of gluten over the period of about a week. No D (actually C used to be more my problem), no bloating, no symptoms at all.

then at the end of the week my vagus nerve switched off suddenly. This means paralysed stomach. Living with a paralysed stomach is not fun. Imagine sitting there with food in the stomach, but absolutely starved of energy - stomach won't churn and empty into the intestine.

i've been able to partially restore the functioning of the vagus nerve (stomach control nerve) since going absolutely gluten-free. Other things like peripheral neuropathy have improved but not gone away. No improvement to osteoperosis of my spine. I can look back over a couple of decades and recall how my ability to eat went from normal to severely impaired, each year a little worse than the one before. Unforntunately I don't expect to completely recover.

So no I don't get glutened either, it just slowly kills me.

[nettiebeads]

My reaction time varies. But what is consistent for me isn't the intestinal, but the "head" problems. Mood swings, depression, brain fog and severe fatigue that can last up to three weeks. So even if your stomach isn't responding right away, (sometimes it took me 24 hours to know that I had been glutened) you are still doing damage. Hon, you for some reason have developed a denial about the severity of celiac. I'm beginning to worry that you will not start taking care of yourself properly even after all of the posts and what your mother has gone through for you and not even for Mallory. Stop the gluten, please!

Annette

[Guest Robbin]

I don't want to offend you, either but, please for yourself and your daughters' sake please don't risk it. You probably are one of the "silent celiacs". Not many symptoms, but damage going on inside. Also, maybe some symptoms you have are going unnoticed since you have had it since baby-hood, how would you know what is not "normal"? This is a scary, scary disease and its insidious nature is such that you just don't know about the damage until it is too late. The neurological damage-not to mention cancer-sometimes is happening a long, long time before symptoms alert us.

I am scared for you and worried. I have a son who doesn't take anything regarding his health seriously (he's 21, type I diabetic) and you remind me of him. I think when you are young and not feeling sick, it seems so far from you, but I was a young person like you once too and I didn't have the "advantage" of knowing what it was that was making me so ill, therefore, I have been a sick mess for 25 years-gradually getting worse and worse. I am afraid that some things will never heal, especially the neurological damage. Please, we say this with love and friendship--don't even eat a crumb of gluten--it is poison to you. :)Sorry to sound so "preachy" but I am saying this with only good intentions for your well-being.

[penguin]

Not everybody has instant reactions, or much of a reaction at all. You have a potentially fatal disease, and it is nothing to mess around with! You have to be around for your husband and daughter, and if you're not going to stay on the diet for you, stay on it for them. Stay on it for your mom, who worked so hard to keep you healthy while you were home! You clearly have celiac, no doubt about it, you almost died! You were just too young to remember, and in some ways that's unfortunate, because you don't know about the pain.

I know the difference between plain old upset stomach and glutening because:

Within 10 minutes:

- brain fog, I feel really stoned

- sweating

Within 30 minutes:

- Heartburn

- D-like cramping, though not always D, though I do always end up with an urgent need to use the restroom.

- Depression, though I don't know if that's mental or physical, I may just feel defeated after trying so hard

And then I feel generally crappy, am better the next day, but it takes a week for the brain fog to go away completely.

[jerseyangel]

I can tell the difference--gluten causes my anxiety to rev up, lightheadness, irritatability, fatigue, and neuropathy along with the D. I have additional food intolerances--I know because every time I eat the particular food, I get a different, but consistant reaction--lower cramping and stomach pain. By keeping a log of what I eat, and how I feel has helped me sort out the problem foods. Some people are just more sensitive than others--and I agree that some of this is due to the damage not yet healing completely. In any case, at the risk of giving my opinion when it hasn't been asked for, even if you do not feel any symptoms from ingesting gluten, the damage is still occuring--and the small amounts will build up over time. What you're doing is 'testing' your symptoms--you already know you have Celiac. There are people on the board who have no symptoms at all--they were diagnosed because a family member was diagnosed. Either way, we all need to stay gluten-free

[jenvan]

Mallysmama--

I think sometimes overgeneralization can happen and gluten gets blamed for things that have actually have a different cause. However, in some cases people do have unique gluten reactions and can track things pretty well. I think what you've asked is an excellent question. I have GI issues and random symptoms that come up but I hardly ever attribute them to gluten. That being said, the body is still a mystery in many ways--and sometimes we respond noticeably to gluten and other times we don't. We cannot rely soley upon our symptoms to tell us what is occurring within our bodies. Pre Celiac diagnosis I attributed my GI issues to a host of foods but none of which was gluten-foods. I could eat a bowel of pasta and not experience diarrhea or cramping. However, the gluten was still destroying my body. So eating part of a muffin may or may not tell you anything. That is why an elimination diet must be tried for a longer period of time and that individual must look at the 'big picture' vs. a one-time experiment. I do believe that micro-amounts of gluten are enough to harm a person and have read several studies that confirm this. I hope I've responded to what you're asking!

[prinsessa]

The only instant symptom I get after eating something with gluten is bloating (looks like I am pregnant) and then I start to feel really full. I don't get D until the next day. I still have a little D some days even when I don't eat gluten because I am still healing (it has only been a couple of weeks), but it isn't as bad as when I eat something with gluten. Sorry if this is TMI . You can still be doing damage even if you don't instantly feel it.

[Susan123]

I am gluten sensitive but I get a burning sensation in my stomach. Dr. said it is excess production of stomach acid due to sensitivites/allergies.

[aikiducky]

Here's another controversial thought: You might be ok. Since you've been gluten free for so long, it might be that your body really doesn't react strongly to an occasional exposure to gluten. It's the reaction that does the damage, not the gluten itself! Plus, there really seems to be a sort of lull in the symptoms of the disease until the twenties or thirties, lots of people that get diagnosed as a child go off the diet, don't seem to feel too bad until their in their thirties, and then get sick again.

If you start to have gluten fairly regularly though, I sure you would start reacting again at some point. Plus, and this is the scary part - you can't know for sure until years from now whether or not you have damaged yourself with too much gluten exposure, and whether or not that would result in irreversible damage or scary stuff like cancer.

I still think it would be a good idea to have a follow up bloodwork and biopsy. It would give you more information to go on. But I think it would be important that the doctor looks for very subtle signs of damage, like very mild inflammation, because I doubt you would have major damage.

Pauliina

[mart]

My celiac disease son experiences SEVERE stomachache when glutened. I do not have Celiac or even gluten sensitivity. But I can tell you that we are gluten free at home for his sake, and when I do eat gluten when we go to restaurants, I experience this brain fog that everyone's talking about. That just tells me that what some people say is true: gluten is poisonous for everyone. Yes, you will ocassionally have stomach problems unrelated to celiac disease, but if you are careful to stay gluten-free, at least you will have peace of mind that the diarreah or stomach pain isn't the result of something that will kill you.

[penguin]

It's the reaction that does the damage, not the gluten itself!

Sorry Paulina, but I beg to differ!!!!

THE GLUTEN IS WHAT DOES THE DAMAGE!

The body creates antibodies to fight the gluten and then the antibodies think that the villi are gluten too, and attack!

Here's something from the CSA:

"The Damaging Proteins

The term "gluten" is, in a sense, a generic term for the storage proteins that are found in grains. In reality, each type of protein - gliadin in wheat, secalin in rye, hordein in barley, avenin in oats, zein in corn and oryzenin in rice - is slightly different from the others. The "gluten" in wheat, rye, barley, and in a much lower amount, oats, contains particular amino acid sequences that are harmful to persons with celiac disease. The damaging proteins are particularly rich in proline and glutamine (especially the amino acid sequences which are in the following orders: Pro-Ser-Gln-Gln and Gln-Gln-Gln-Pro). As peptides, some such as 33-MER, cannot be broken down any further. In people with celiac disease, 33-MER stimulates T-cells to produce antibodies. The antibodies, in turn, attack the villi in the small intestine, reducing their ability to absorb nutrients. It is important to note that these sequences are NOT found in the proteins of corn and rice."

Not everyone with Celiac is symptomatic. There are people on here who's only symptom was anemia, but when the bloodwork and biopsies were done, they had damage!

If you know you have celiac, you HAVE TO remain gluten-free or face huge medical problems down the road!

[MallysMama]

Okay, after reading all that - I have a couple more questions. (Thanks for the replies, by the way.) How does anyone know for a Fact that celiac is a life-long disease? It doesn't seem to have been around for very long to really know that answer. So, isn't there a chance that it could go away? How is a blood test or biopsy going to be able to tell me anything? Will it be able to tell me how much damage I've done - or just that I "still" have Celiac? I really do Want to "get" it....but I guess it's just not connecting in my head that I'm hurting myself.

Second question - could someone (or many someones) describe what you all keep refering to as a brain fog or neurological damage?? That might be what worries me the most. I have just been attributing it to the "mommy brain syndrome"...where you get forgetful. And after spending all day with a toddler...it becomes hard to even carry on a conversation with an adult. I find myself short for words and stumbling a little bit. I've always been a little shy - but I took Theater in high school to help that and did a few plays... and I loved my english classes in school....so this problem with speaking isn't normal for me - pre-baby days. But I just thought it was because of talking to a toddler day in and day out that was making me "conversation retarded." Could it be other reasons? And how is that diagnosed - from a doctor's perspective?

Third question - How can you be sure that the mood swings are caused by the gluten - and not just being a female (for all the females anyway...)? I've always been moody...and out of all my sisters had the most trouble with friends - I'd just get in this mood where I didn't want to be around anyone after a while. I probably have a few symptoms of hypoglycemia (though never diagnosed)....where I'd get sooo moody and grouchy if I hadn't eaten for awhile. As I've gotten older I can start to recognize the symptoms before the hit full force...so I can kinda warn my hubby that I need to eat. I kinda feel like I'm losing control when that hits. But I've always been that way - even when I was doing the diet 100%. So, how can gluten be to blame for my moodiness?

Fourth question, similiar to the third - Why does gluten cause exhaustion and sleepiness? I've always been able to sleep forever....having a baby was a rude "awakening" for my sleep cycles! I don't ever feel like I have a lot of energy to do things....but I just blame it on being more "lazy" than I should be some days. How do I know that it's the gluten causing it?

Okay...so, some help with these answers would be much appreciated!! I've said this a lot - but I'm really glad that you guys care so much for someone you don't even know. I do appreciate your "preaching" and encouragement....but I still think it's going to take a while before I can completely change my bad habits. Maybe just talking to a GI would help it click in my head to do better. I tend to doubt (if you couldn't tell) a lot of things that people say. I guess I need to find out on my own! But keep up the preaching and I'll keep working on doing better!

[Guest nini]

Celiac has been recognized for several hundreds of years... it's not new. I don't have the info in front of me, but I know it was discovered a long time ago, it was just (mistakenly) thought to be very rare for a long time. They are just starting to realize how prevalent it actually is.

Brain Fog... gosh, it's hard for me to describe in words other than brain fog... neurological damage, well, I was having seizures... dx'ed with non specific seizure disorder that went away when I went gluten-free.

Third question, you can't be sure... but the closer you are to being 100% gluten free, the sooner you will be able to determine what things are gluten related and what things are simply something else.

Fourth question, your body suffers from malnourishment and can't get all the energy it normally should be able to get from food.

I about gave up on lecturing you, I was worried you weren't gonna listen!

Since I have permission, I'll keep harping on you to do what you know is best for you and your little girl and your family.

If you were my daughter I would be crushed that you didn't take all my hard work seriously enough. I worry every day that my daughter will one day grow up and decide that she doesn't believe that she's gluten intolerant/celiac and will test it. The danger in this is that you do not always have symptoms when you are glutened. But the damage is still being done. Cheating a little bit is like not being gluten-free at all.

There is no try, only do... What keeps me from cheating is the mantra "gluten is poison" I repeat this over and over to myself if I am ever tempted.

[penguin]

To answer your first question, the "celiac affliction" was recognized in the late 1800's, and it wasn't until the 1950's when there was a wheat shortage in the Netherlands that a doctor linked it to gluten, because the celiac kids were getting better without wheat. There are other diseases that are newer, but the problem with celiac is that is has been thought to be so rare all this time when it's really not. Doctors don't know of any other way to prevent the intestinal damage other than to remain on a gluten-free diet. Also, it's an autoimmune disease, and those are typically for life. We're lucky, because ours can be treated by diet alone!!! At this point, your blood tests and biopsies won't show much, because you're gluten-free primarily. I think you have to be eating the equivalent of 4 slices of bread a day for 6 weeks for anything to show on a biopsy. That doesn't mean there isn't damage being done, however.

About the brain fog, when I get it, my face goes kind of numb and I feel well, stoned. I feel like I'm drunk, or not sober at any rate. It really makes me a cheap date (j/k). For a week after glutening, I have a lot of problems focusing, completing sentences, spelling, and remembering anything. I have the attention span of a goldfish during these times, and I usually don't have talking problems either. You could have ADHD or something, or just mommy brain, but if it's happened since you've stopped being careful, there may be a correllation.

I've been hypoglycemic since I was a teenager, so I know about all of the symptoms you describe. I haven't had ANY blood sugar problems since going gluten-free. That tells me that I wasn't absorbing what I was eating, so my sugar levels would drop. For me, that explains why when I ate oatmeal for breakfast, I was hungry 2 hours later, when dr's said that was the best thing to eat to give you lots of energy. I'm also a lot nicer gluten-free, I would get out of control and feel like my moods would swing way further than I ever thought they could. I yelled at DH a lot, needless to say, he's happier now that I don't do that much. I've been on the pill forever, and I usually get much worse mood swings off the pill than on it, so I don't think my swings were that.

Gluten makes you sleepy because your body is busy attacking itself! You aren't absorbing nutrients! You're anemic, your B-vitamin levels bottom out. I'm way less sleepy than I was, and in moments of clarity, it's great!

Of course we care!

[Becky6]

For me the brain fog is the worst! I never knew what it was until I went gluten free. But it feels like I am behind a screen and one step behind myself. I can't think or speak clearly. I was glutened a month ago and I could not even function at work! I could not belive that I used to feel like that everyday! Now that my duaghter and I have found we can't have gluten I have been able to track it way back on my mom's side. It def has existed but not very recognized. I am guessing your symptoms are gluten related. Good luck!

[Mr J]

.... - have I become "desensitized" to the effects of gluten? Or are other people just so new that their intestines need more time to heal before their reactions to food lessen? Any insights?

i'll have a go at answering that question, which i evaded in my original reply. It seems that everyone is different when it comes to health issues. I also seem to remember that there is some sort of law of statistics that says if it can happen it will happen (or am i having some foggy memories from hitchhikers guide to the galaxy?)

I'm someone who recovered from epoxy resin sensetization (from building surfboards as a hobby) - usually recovery doesn't happen and the fiberglass enthusiast has to avoid epoxy resin for life, but from my hobbyist perspective i was one of the lucky ones. So can gluten be the same? and if it can be the same with you and gluten ie. its possible to become gluten sensetized and you are one of the lucky ones? Those things are not absolutely understood by humans. Thats a question for the creator, the creator would know (whatever the beliefs, whether the creator be god or evolutionary nature). So i'm not a prophet, and I assume you aren't a prophet either (i define prophet as direct communications link to god), so i think we can say that we don't know. But we can guess, and from lurking on this msg board for some time there wouldn't be many ppl who would bet on the desensetization possibility.

really at the end of the day any decisions (actually every decision in life is a gamble or bet isn't it?) are all about leading a reasonable life to stay happy (which involves keeping those around us happy too). I'm just another human trying to stay happy and not everything i do is the safest health option. I just can't sit quietly in my room every day and do nothing and stay happy. I mentioned that i had osteoperosis of the spine (10 times more likely to fracture it than normal). From a being sensible pt of view, I suppose i should give up skateboarding, stop surfing, and stop riding my bicycle. It was far from obvious to me that i had it, my back isn't stooped yet and every broken bone seemed to be associated with a solid reason. age 9, slid down some stairs fell about 8ft onto my left arm and broke it. Age 30, passenger in car crash broke rib. age 33 full contact taekwondo punch to rib broke another one. same happened twice more (missed my chestguard and penetrated through armpit region into ribs) Bicycle crash broke hip at age 38. Car ran me over when cycling, and broke collar bone age 39. It was only until about then that i got diagnosed with the bone density problem.

on the plus side the neuro damage to me which messed up coordination in my fingers and feet has spared the motor neurons that allow me to balance and manouvre my surf and skateboards :-) i've also been able to retrain my feet to not trip up when getting to my feet on the surfboard. i've also pranged my skateboard several times with no broken bones - bruise to hip, knees, nasty scrape on elbow - my wife now insists that I wear elbow pads and i comply. I also at her request wear a buddha image around my neck every day for protection - i also comply even tho we aren't together every day for her to check. So i'm taking more risks than necessary but for now managing to stay happy.

hmm i've ran way of track, so to make a more relevant comparison i've been diagnosed with casein anti-bodies by enterolab, but controversially i consume goat dairy which does share some of the same casein proteins altho in different quanitities. It doesn't seem to do me any harm. Having said that no one could persuade me to ingest gluten, even intermittently tiny quantities. I used to love donuts, but haven't given in to tempation once since the enterolab diagnosisis and return of my vagus nerver functioning. those are my choices.

seeing as we don't have absolue answer to your original question we can only theorise based on imcomplete knowledge, so as well as the densetization theory how about pondering the two following scenarios.

theory 1. i've read that the intestine is very long, metres long, that some asymptomatic celiacs remain asymptomatic until the villi flattening runs the entire length, so could it be that you flatten a few centimetres of villi by your occassional glutening but allow sufficient time for them to grow back?

theory 2. As theory 1 but the villi flattening is causing some silent damage and that like me you may be getting some silent irreversible damage such as osteoperosis that will eventually rear its head?

who knows?

cheers,

Mr J

[megsylvan2]

Thanks to all the great board members who give of their time to help others out. And thanks, MallysMama, for posting the questions. These are things I've been wondering about and wanting to know too. I'm just going through all this process of figuring out what is wrong with me. I read the posts here to learn, and try to sift through everything and figure out what I need to pay attention to. I'm still at the stage where I'm pursuing diagnosis to make sure I know exactly what I am dealing with so that I am sure I am pursuing the proper treatment.

I feel very certain that I have Celiac (or the beginnings thereof) because of the effects that I feel when I eat wheat, gluten and secondarily, egg and dairy, and because of the absence of symptoms I have when I do not eat these things. However, my mother had colon cancer, and her father died at 56 of intestinal cancer, so I first want to be sure that is not in any way related to the current issue. If I am sure I can rule that out for now, then if I'm left with gluten intolerance/celiac disease, I want to be sure I don't let it become intestinal or colon cancer in the future.

As MallysMama mentioned, there are so many symptoms that either could be -- or could not be -- connected. Sometimes after reading about all of these, it seems entirely possible that these symptoms could be related to gluten intolerance. It could explain the anemia of unknown cause I had several years ago, followed shortly thereafter by a deficiency in carnitine. It could explain the memory problems, brain fog, and difficulty thinking that I've been complaining of and seeking a cause of for several years now. Maybe the mood swings are related to this - or maybe I'm just a moody person. Maybe the extreme irritability I get when I need to eat or maybe the hypoglycemic shakes every once in awhile when I don't eat enough are related -- or maybe that’s just normal for everybody. Maybe my mother's and her mother's arthritis and osteoporosis are related (and maybe I'm next). What about the reflux and h pylori? Did the h pylori cause this, or was it a result?

I mean, maybe these are just isolated problems in and of themselves. The point it, how will I, or my doctor, or anyone ever know? (We won’t.) I guess it's easy to start reading about all this stuff, and then think about all the matching issues that I have, and then suddenly -- boom! -- I'VE GOT THE BIG DISEASE! I mean, isn't that what everyone who doesn't have an official diagnosis gets accused of by their friends and family (even if it's never said aloud)?

I mean, most of the time I understand that some of these things may or may not be related, but that taken together, they can point towards a pattern of symptoms that indicate Celiac. But then other times, I just think I’m being melodramatic and connecting every little thing to gluten intolerance. (Can you tell I have trouble sticking with a decision?)

In any event, I appreciate the questions and the answers to whether or not one can eat any gluten once in awhile. Like for most newbies, it is a learning process to get your hands around this disease and how it works, and what can happen when you eat gluten and how you heal. I still have trouble grasping the crumbs of gluten thing, and the separate dishes/pans/utensils. I’m not there yet, so I’ll keep reading and learning. And I’m still not past the denial stage, so I keep testing myself. (But I keep failing, so I’m almost over that, too.) So I’ll keep reading and learning. Thanks again for the questions and answers. I think there are a lot of us out here who don’t have time to post a lot, but we keep reading and learning.

(Sorry, - I don’t have the time to post often, so when I do, it is always long. I guess I can only keep it bottled up for so long. )

[MallysMama]

megsylvan,

Thank you for your beautiful post. As I was reading your post, even though this is way off the subject, I kept thinking what a great writer you are! I wish I could put my words down, of how I feel, as well as you just did. Anyway...

When I first found this message board - I thought "Hey, I've had Celiac forever, I bet I can be of some kind of help!" hahaha!! What a funny thought that was! Now, I'm probably the most confused, lost celiac here. I am so surprised at just how much I didn't know about it... and am continually amazed at everything other people are teaching me. I am relying on this website very much right now because of my "lost-ness" (yes, I know it's not really a word). My hubby is working so much right now and I'm working and also taking care of our toddler.... so when my daughter is sleeping - and my hubby's not home - this has become my "refuge" in a way. I haven't even really had the chance to sit down and tell my hubby all I've been learning about myself and this disease. He really doesn't know much about it - barely even knows the name. I know many of you are saying that it would be almost impossible for your spouse to Not know about the disease you have been struggling with for years. I guess I just made it such an un-important part in my life. But now that I'm finally able to ask these questions and get some answers from people who understand - it's (slowly but surely) helping to bring things back into focus.

Mr J - explain more about how you were diagnosed with the vagus nerver problem. I've never even heard of that part of my stomach. How did you know that was happening to you?

Chelse - I appreciate your explanation of having brain fog - but I still dont' understand. I don't know what it's like to be stoned or drunk or un-sober in any way. I've never in my life drank alcohol or touched any type of (non-prescribed) drug. I'm not saying this to be-little your answer in any way - because I'm sure it's a great explanation of how it feels. I don't feel my face going numb or anything like that. I just feel like I'm in a daze. Sometimes (it happens frequently at work) I'll be walking and all of a sudden it's as if I'm in a cloud...and then I come out of it slowly and it's the weirdest feeling. I've never passed out before - but I'm guessing it's close to what someone might feel before they pass out. I feel like my reaction time is slower than normal. I'm constantly barely avoiding running into people at work because of this unstable feeling. Does any of this sound familiar - or close to what you described?

[Ursa Major]

Sometimes (it happens frequently at work) I'll be walking and all of a sudden it's as if I'm in a cloud...and then I come out of it slowly and it's the weirdest feeling. I've never passed out before - but I'm guessing it's close to what someone might feel before they pass out. I feel like my reaction time is slower than normal. I'm constantly barely avoiding running into people at work because of this unstable feeling.

Ah, now we're getting somewhere! That's exactly what brain fog is like. I've had many times (I remember even as a child) periods where I felt like I wasn't really there, that reality was unreal, like walking around in a dream. And sometimes I feel like everything is far away, and I hear people talking in a whisper, and it looks like I am seeing everything through a fog. And I know that if I don't sit down, I will probably pass out.

Mind you, those episodes are getting more infrequent. But they still happen at times.

Also, I am forgetful at times. I remember once, a couple of years ago, I was making hot dogs, and realized that I forgot to buy buns. My family was sitting at the table, but there were no buns. So, I drove to the store to buy buns. When I was there, I saw several things I needed, grabbed them, paid and went home. The kids said, okay, lets have the buns! I checked the bags, and I had bought a bunch of OTHER things, but forgot the buns! Now everybody was angry with me, and I rushed back to the store and bought the buns. NOBODY believed me that I didn't do that to bug them, they accused me of not caring, or how else could I be so forgetful? Well, I was in a brainfog, and simply couldn't think straight!

I am still forgetful at times, but that topped it for sure. I don't think I am as bad as that any more now that I am not eating the foods I am intolerant to.

[frenchiemama]

RE: Brainfog

The best way that I can describe it is that I am in such a daze that I feel disconnected with what is going on around me. People say things to me and I don't completely understand. I have to read the same passage over and over again before it starts to make sense. I forget steps in a process that I am trying to do and end up just staring at the computer screen (or whatever it was that I was trying to do). I leave things lying around half done and completely forget that I was working on them in the first place. It's like I'm trying to walk around and function underwater while everyone else is normal.

Also, I am forgetful at times. I remember once, a couple of years ago, I was making hot dogs, and realized that I forgot to buy buns. My family was sitting at the table, but there were no buns. So, I drove to the store to buy buns. When I was there, I saw several things I needed, grabbed them, paid and went home. The kids said, okay, lets have the buns! I checked the bags, and I had bought a bunch of OTHER things, but forgot the buns! Now everybody was angry with me, and I rushed back to the store and bought the buns. NOBODY believed me that I didn't do that to bug them, they accused me of not caring, or how else could I be so forgetful? Well, I was in a brainfog, and simply couldn't think straight!

I would be embarassed to admit how many times that has happened to me. I go to the store for a specific item, and end up with everything but what I went for.

[gfp]

Sorry Paulina, but I beg to differ!!!!

[penguin]

Again not correct....

Celiac was first described by Aretaeus of Cappadocia in circa 2AD ..

Of course the Romans knew nothing of the immune system or even bacteria but the link to wheat and other grains was established and also mentioned by Galen.

I stand corrected, all the history I had read about Celiac didn't mention anything before Samuel Gee in 1888. I just looked more in depth to the history, and I'll be damned, you're right! Funny how you can miss entire centuries of history...

I think that is the point?

The damage is because of the immune system, not the gluten.

True, but it's all semantics, isn't it? If you don't ingest the gluten to begin with, you don't have the immune reaction. Just two different ways of seeing it, I guess.

I get almost an out of body-in body experience like I am totally disassosiated from my immediate surroundings and controlling myself by a delayed remote control. I still see from my eyes etc. but conversations slip by me like Im elsewhere.

That is a great description of brain fog without using a comparison to controlled substances

I generally feel like my brain is on the ceiling, I'm there, but I'm removed. Makes it very hard to be productive.

[jenvan]

I also describe "brain fog" as feeling disoriented, confused, dizzy-like.

Mallymamma--You are asking some excellent questions here--ones we don't know all the answers too! Much of Celiac is still uncharted territory...but hopefully that will continue to change in the new future. It is possible that some folks experience a period of "remission" from their Celiac reactions at one time in their life...but I don't think that changes the protocol for having Celiac and that what needs to happen is adhering to the diet. One thing I struggle with is that oftentimes it seems much of Celiac knowledge is "subjective" and areas remain gray. In this case, how would one decide if they were in "remission"? What would that mean exactly? How would they know if their "remission" ended?? I think it is a dangerous area and one that should never factor into the choices we've made. Personally, I think its irrelevant at this point. Gluten damage is not only in the intestines...but can occur in other organ systems and often that can't be tracked or measured...so how are you ever sure you are "safe" from gluten if you were diagnosed at one time with Celiac or gluten intolerance?

It is possible that someone could be misdiagnosed with Celiac and then pursue another route, but that is not commonplace. Also, having any testing, blood, biopsy or otherwise will not be accurate after being on a gluten-free diet. So some may think they do not after Celiac afterall when, after following a gluten-free diet, get tested and receive negative results--which are the result of having been on the diet. Even a 'gluten reduced' diet can change the results.

Brain fog can be a "symptom" of neurological damage, which Celiac can cause. If your doctor thinks this is a possibility you can pursue it with a neurologist.

I am glad you are getting some moments of 'refuge' and hope you get a chance to sit down and talk with your husband soon. Maybe you could get a babysitter and do a night out of catching up. I hope I haven't only confused you more here!! I can't recall all your history, but if you were diagnosed with Celiac, you need to stick with the diet. Maybe reading through the book Dangerous Grains would be a help to you--very informative on all the impacts gluten can have on our bodies.