[bluec66]

A family member is a nutritionist and she suggested two years ago, that I was most likely gluten-intolerant, given what she had observed of my behavior after I had eaten it. I took her advice on the matter and decided I'd go religiously gluten-free this year. There have been a lot of positive results.

I also notice an extremely negative difference. I've been religious about my gluten free diet for the past month (I accidentally ingested some last month. Not very much, but a little.). The first two weeks were fine. After those two weeks though, my bipolar tendencies have been emphasized to an extreme and I've been absurdly depressed and, as a result, overeating since then.

My mother is a biochemist and suggested that it's possible that the gluten free-diet was making my depression worse and causing my overeating. I ate some last night, but not enough to give me the hallucinogenic-esque effects that normally come with eating a lot of gluten. This morning I feel... better than average. I want to overeat (an urge that is a result of my depression) but I feel that I can control it. I haven't gone through my day, so I don't know what my mood swings are going to be like, but already the fact that I don't want to overeat is extremely significant for me.

Basically, my question is whether or not I was just going through the normal stages of going gluten-free, or whether my body is naturally biochemically dependent on (just a little bit of) gluten for it to function?

[Takala]

You've left out a lot of information. Did you get a blood test run to see if you had gluten antibodies ? Did you get a biopsy for gut damage, or a brain scan to see if you had bright spots ? Do you have any other medical conditions diagnosed that are associated with being gluten intolerant or celiac ?

Are you eating a nutritiously balanced diet, or are you also on one of these more self initiated, restrictive routines where you've kept eliminating all sorts of other things, so you are now out of whack ?

Do you take supplements ? Exercise ? Make yourself go for a walk everyday?

Are you on any medication for the bi polar, compulsive, or depression tendancies ? And are those medications gluten free ?

________
The reason I ask all of this is that if gluten is really your problem, which could be as you describe positive results, you can't do it half - way and cheat. Needing "just a little bit of gluten to function" is a crock, it's the equivalent of saying an alcoholic needs "just a little bit of wine every night" to function. And yes, a delayed emotional reaction is possible. Many people here on this forum have described the addictive effect of eating gluten and gluten withdrawals when they first went off of it.

If gluten is your problem, you most likely are lacking the ability to absorb enough nutrients, because of gut lining damage, and you do need to supplement with a B vitamin complex, calcium, and magnesium. Supplementing really helps get cravings under control.

If you went gluten free by replacing a lot of carbohydrate and bread consumption with a lot of gluten free baked goods, especially with a lot of rice flour and sugar, and if you eat a lot of candy or fruit, too, you may be setting yourself up on a boom and bust cycle of blood sugar high spikes and low sugar crashes. That combined with your kidneys merrily trying to regulate your blood calcium levels, would drive even a normal person to bingeing on Twinkies.

A high fat, high protein diet can also help regulate cravings. I eat a bit differently than my non- gluten intolerant spouse, and I have to remind myself that HE is going to get hungry promptly at certain times and if we are going somewhere, I need to pack snacks for him as well- I carry food just in case we can't find something safe and I might get hungry, but we've gone hiking and my fat- burner metabolism is carrying me along without a problem and he's having a crash and needs food. I learned this the hard way on a difficult supervised nature hike in bad weather, when one of the leaders saw what was happening and whipped a regular power bar with sugar out of his pack and fed it to him because he was getting hypothermic, as we tried to get out of the wind and get him warmed up. I had packed.... hard boiled eggs. This is one of the reasons I started baking again, so we have bread around. He was like, "oh, we don't have to buy bread anymore, don't worry, I'll just eat it when I buy lunch out." While this is very considerate, it's a lot easier to pack gluten free sandwiches, than to find a gluten free restaurant meal on the run.

If you haven't been stuck in one of these bodies with this sort of metabolism, and experienced what happens when a person who should be sucking down lots of meat, nuts, fats, vegetables and complex carbs tries to, instead, eat like like one of these high carb women that live on bowls of dry cereal (gaaaaaaack ), low fat cheez product and diet sodas, you have no clue.

If you are on medication, and you've stuck with a gluten free diet and gotten your damaged gut to heal, you may need different medication or the dosages adjusted. You also have to be vigilant that you don't accidently get glutened from medication.

[FMcGee]

First, a disclaimer: I've said it before here and I'll say it again, but I am two weeks into gluten-free living and not an expert on that (although I have been blowing off my writing to read about celiac disease for the past month, and holy cow, is there a lot of information out there!). I do, however, know a decent amount about nutrition and exercise, so I'm going to try to respond to this from that angle more than from the celiac disease angle.

I completely agree with everything Takala said (except I like dry cereal - just not exclusively!). You need to know your own body and what kind of food and exercise you need to be at your optimum health. I've noticed that there are a whole lot of gluten-free junk food options out there, and I've never been a junk food person, but my partner and my mom have both been buying me things just because they're gluten free, out of the best of intentions, that I never would have eaten when I was eating gluten (like chips, pretzels, etc). I think there is a temptation for a lot of people to comfort themselves with gluten-free versions of things, to reward themselves for avoiding gluten - or they think that gluten-free versions of these things are somehow healthier. They are not. Gluten-free baked goods and junk food seem to be at least as high in bad fat and sugar, if not higher, as gluten-full things. I can see how eating a lot of gluten-free "replacement" food like this could cause celiacs to feel awful at the beginning of going gluten-free. They're eating a lot more processed stuff that's even higher in sugar and bad fats than they were before. They're not getting nutrition from these foods. I've noticed that all over the boards here, people are urging celiacs to avoid these types of foods, and focus on healthy produce and whole grains like brown rice. This is all a very long-winded way of saying that if you already have problems with bipolar disorder, and might be eating a less nutritious diet than you were before, that could certainly make your symptoms worse. Gluten or not, I always feel better eating a whole-foods diet. A gluten-free whole foods diet (plus my regular exercise and some supplements) has me feeling like a whole new person in two weeks.

All of THAT said, I second the statement that you should probably get tested if you haven't been. If you don't have celiac disease, going gluten-free probably isn't going to solve your problems. Whatever it is, I hope you feel better soon!

A question to Talaka: Brain scan for bright spots?! This sounds terrifying. What's that about?

[bluec66]

You're right, I did leave out a lot of information. I have not had any tests run, I am going solely on family history and advice from a nutritionist who has casually observed my eating habits over my lifetime (she is a family member). I am definitely not extremely gluten intolerant... hence gluten intolerant, not celiac. It is noticeable when I consume large quantities of gluten in that I become nauseous and I get the spins, in addition to a number of changes in personality. Usually I like to sleep these "episodes" off when I have them. I am hypoglycemic with a high metabolism and I'm drastically affected by the kinds of food I put in my body. As I mentioned before, I have bipolar/obsessive-compulsive tendencies that go along with a consistent case of nontrivial depression. I am on no medication right now. (I swear I'm not super insane though, I've come light-years emotionally over the past 3 years and about 90% of the time I'm completely normal in social interactions.)

I run between four and nine miles a day for exercise in addition to walking or biking to anywhere else I need to get during the day. Vegetables make up the majority of my meals. I eat meat at most once a day, and when I do it's normally either light chicken or fish. I do eat dairy, but not a ton (out of preference). I do eat nuts and fruit as occasional snacks. I have researched supplements and made sure that the ones I buy are properly absorbed by my body. This isn't including my cravings, which consist of strictly high-fat, extremely sugary foods. Which is odd, because I've never enjoyed large quantities of sugar that much. Like I said, these high-intensity cravings started occurring strictly after I started abstaining from gluten.

I do disagree that saying that you need a little bit of gluten is a crock. The metabolic network is made up with so many different pathways, not to mention the fact that every person has a different variations of metabolic enzymes and pathways based on their genetics. I think that, like in most things, gluten-intolerance does not come in absolutes; otherwise there wouldn't be gluten intolerance, simply celiacs and non-celiacs. I was just wondering if anyone had ever run into the problem of a gluten-free diet causing adverse reactions rather than positive ones. Hence my original question at the end of my post. I'd also like to point out that I'm not entirely sure that feeling significantly less bipolar and OCD while consuming a small amount of gluten is a bad thing. Just saying.

 Takala, on May 24 2009, 09:38 AM, said:

You've left out a lot of information. Did you get a blood test run to see if you had gluten antibodies ? Did you get a biopsy for gut damage, or a brain scan to see if you had bright spots ? Do you have any other medical conditions diagnosed that are associated with...

[Takala]

FMcGee- the "bright spots" are little brain plaques or lesions that can show up on an MRI scan of the brain. If one has a form of gluten intolerance that has the damage showing up as neurological symptoms mimicing MS, and they are trying to diagnose you with the wrong disease, they might run a brain scan looking for it. (which is when they stick your head into a machine that sounds like baseball bats pounding a galvanized metal garbage can and expect you to hold still for a half hour.) Then they inject you with contrast dye and do it again. They may miss a vein 8 times, which is when you manage to still hold completely still and tell the tech to FIND ANOTHER TECHNICIAN WHO CAN DO THIS in a very serious voice. When you are good and deaf from the pounding, and dizzy from laying there for an hour, the twerp who couldn't find the vein comes back and acts sarcastic as she tells you to hurry up and get out as she has other patients and then goes into some sort of bizarre rant about how she wasn't allowed to help people up.

Some people aspire to be Nurse Ratched and should not be allowed near sharp objects.

But because I was already on the diet for over a year at that point, I held my temper and merely got her name and complained to the management.

I had to get another procedure a year or so later, on the last day of October, and told them not to give me this person and was reassured that would not happen. So I enter the prep room and here she is with another dude, and they're both in Halloween Costumes. I think she was in some sort of Harem outfit with a veil, and he's out of the cast of Buffy the Vampire Slayer. I live in CA, where they really go overboard with this costume routine everywhere that week. I give her the eye. I know they want me to scream and I'm not going to. The guy in the vampire outfit says "Hi, I'm "xxx" and I'm going to be your technician for this procedure." I thought, that's real good, because if this female creature comes anywhere in that room with me, she's going to be history.

The piece de resistance on the first round was the scan was ordered by the neurologist from h*ll™, whose office was not cooperating in giving me subsequent appointments to explain the implications of being diagnosed with brian lesions. Yes, when somebody like a desk clerk calls you up and chirps that you have brain lesions, after the initial shock, curiosity seeps in and normal people like to find out why and what sorts of symptoms these can cause, and will it get worse. This doctor's office won't talk to you over the phone in detail for anything, you have to come back. Well, Dr. Fruitcake makes me wait a month, tells me I must have migraines ( I don't, because I am on the diet now, which she can't believe) and then she realizes I'm still not going to let her do the spinal fluid test because I still don't think I have MS because I am feeling better on a gluten free diet. I tell her AGAIN to look at my cervical spine, and that will show where some of the nerve problems are originating, which she has refused to do. So she says she has to go check her notes when I ask just where the little holes are in my brain and how does this correlate to the specific symptoms I am having. And she walks out of the exam room and never comes back in. Eventually a nurse comes back to dismiss me.

This is why I tell people they MUST GET COPIES OF TEST RESULTS. That doctor was not ethical and was insisting there was nothing to show I had any type of disease, even given the test results before her. She even was going as far as to imply I was a head case. I eventually pried the full test results out of her office, including a scan of my damaged c- spine, which she was lying about, and I self diagnosed based on that.

That brain MRI scan showed something like this:
Brain And Neurological Problems Affect Almost Half Of Celiacs Even With A Gluten Free Diet
http://Spammers Use This To Link To Spam.com/?Brain-And-Neurol...t&id=904155

Quote

There are many neurological problems that in undiagnosed and untreated Celiac disease but include neuropathy, balance problems (ataxia), seizures, MS-like symptoms, headaches, memory impairment, depression and anxiety, inattention (ADD/ADHD), schizophrenia, dementia, muscle weakness, childhood developmental delay, autism (Asperger's). The sad truth is that many patients have delays in diagnosis that result in delayed treatment and poor response even while adopting a strict gluten free diet. The average delay of diagnosis in adults is between eleven and thirteen years. Dr. Hadjivassiliou, a neurologist in England who is considered the world's expert in gluten related neurological problems has communicated to me by e-mail and written that responses to a gluten-free diet may take five years and if the neurological condition has been longstanding complete recovery is not likely.

Many patients with Celiac disease also have what the radiologists and neurologists call "UBO's" on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with celiac disease have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO's seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).

The evidence continues to accumulate, though often ignored or missed, that gluten is toxic to some people's brains, even if they do not have celiac disease. If you do have Celiac disease it is likely you already have neurological problems and may be at risk despite being on a gluten-free diet. Borrowing from the old advertisement against drug abuse "this is your brain on drugs" maybe we should be getting the word out "this is your brain on gluten". Despite your test results, consider a trial of gluten-free diet after you have your testing done if you have unexplained or unresponsive neurological problems. You owe to your brain. Like my seven-year-old son said to one of our friends, "maybe you should lay off the gluten".

Anyway, now that I've frightened you, my experience is that I have recovered a lot more than I ever expected to, given what I started out with. There are different genes associated with the different symptoms of having problems with wheat proteins, if I ever would splurge for the genetic test, I probably have something less common. I responded so strongly to diet trial that I started after a lot of internet research, and after being blown off by the HMO I had at that time, that I didn't care what any doctor told me about "diet has nothing to do with your symptoms." Going back on gluten was "off the table," for me as an option. And I don't get spectacularly gut sick the way many people do, I get fuzzy brained and wobbly with a lot of numbness and burning in my extremities. And I really don't care for brain fuzz.

______________________

To the original poster bluec66:

You could get tested, you know, if you're one of the sorts that needs an "official reason" to do something. You may not get a positive blood test because you have been off of gluten so long, nor a positive biopsy, which they won't do without the blood test. You can even order the genetic tests for the DQ genes over the internet off of several companies. If you start limping, dragging a leg and lose all sensation in it, and start tipping over at inconvenient times and can't feel your fingers to type, and can't focus one eye, you may even get a doc to look at your brain for damage.

Now, if you sort of like the "high" sensation that you are experiencing after eating gluten, you need to tell yourself that this is a known symptom of being gluten intolerant. You may be looking for excuses to keep on eating something that gives you a little, temporary "zip" or buzz. This is because you have not replaced your B vitamins and are a bit low on protein/fat/calcium, something./i]

But I repeat my analogy: [i]If this is your problem, and it's looking that way because you yourself report symptoms of gluten intolerance when you eat it, "nausea, spins, personality changes" "need to sleep it off" ( classic !) relatives telling you you're different when you eat gluten, ocd tendancies and binge eating- you cannot do it as the alcoholic having "just one beer." "Normal" people don't get personality changes from eating croutons that would cause them to then eat entire loaves of bread. Because it's going to trigger more and more cravings. It's a chemical reaction, but you are misinterpreting it. You've almost got this thing under control, you need to tweak your diet and supplements a bit and accept that sometimes you screw up no matter what, and get yourself back on track.

[FMcGee]

Takala: Wow. First, I'm really, really sorry you had to go through all that. Some people in the medical field (and other fields, to be fair) have absolutely no human touch at all. I always wonder how people like that end up in fields that are not only meant to help people, but also put them in contact with a lot of stressed-out and anxious strangers every day. I'm in education, and I see this constantly with teachers and other educators. Blows my mind. I hope you're doing better now.

Also, I have a lot of neurological symptoms (severe migraines, depression, forgetfulness, shakiness, narcolepsy) that I'm hoping go away soon. I've felt pretty gross the last couple of days, and I'm hoping it's just because I ate something with gluten in it inadvertently (though I've no idea what), and not because gluten-free isn't working.

Blue66: It really sounds like there are some complicated issues at work here for you. I hope you find the solution soon. Could you do a gluten challenge? Also, I'm a runner, too - there seems to be a lot to learn about the gluten-free diet and exercise nutrition. I've learned a lot here, and am hoping that if I look hard enough, I'll find a book about it. Have you heard of any?

[RollingAlong]

Also, I'm a runner, too - there seems to be a lot to learn about the gluten-free diet and exercise nutrition. I've learned a lot here, and am hoping that if I look hard enough, I'll find a book about it. Have you heard of any?
[/quote]

I'm not positive what you are looking for, but you could check out The Paleo Diet for Athletes.

[jka8168]

 bluec66, on May 24 2009, 08:53 AM, said:

A family member is a nutritionist and she suggested two years ago, that I was most likely gluten-intolerant, given what she had observed of my behavior after I had eaten it. I took her advice on the matter and decided I'd go religiously gluten-free this year. There have been a lot of positive results.

I also notice an extremely negative difference. I've been religious about my gluten free diet for the past month (I accidentally ingested some last month. Not very much, but a little.). The first two weeks were fine. After those two weeks though, my bipolar tendencies have been emphasized to an extreme and I've been absurdly depressed and, as a result, overeating since then.

My mother is a biochemist and suggested that it's possible that the gluten free-diet was making my depression worse and causing my overeating. I ate some last night, but not enough to give me the hallucinogenic-esque effects that normally come with eating a lot of gluten. This morning I feel... better than average. I want to overeat (an urge that is a result of my depression) but I feel that I can control it. I haven't gone through my day, so I don't know what my mood swings are going to be like, but already the fact that I don't want to overeat is extremely significant for me.

Basically, my question is whether or not I was just going through the normal stages of going gluten-free, or whether my body is naturally biochemically dependent on (just a little bit of) gluten for it to function?

[jka8168]

I am very interested in communicating with bluec66. I see you had a hard time with gluten exposure a few months back and may have reacted to either withdrawal or reexposure...depression, etc.? You said that eating a little gluten made you feel better.

Can you please contact me and catch me up as to what you have done since then and how it has worked out? My email is info@theglutensyndrome.net

Thanks, Mrs. Olive Kaiser