Brain Fog

[Leper Messiah]

Hi,

Just wondering if the primary symptom for anyone was (after a gluten free diet) or is brain fog / fatigue. This is pretty much the #1 issue for me, I do get bloating and nonstandard toilet movements but it really is the brain fog and tiredness which is the issue.

I also think that there is a delayed onset of the symptoms which perhaps explains why I've found it so hard to track the cause - I've been tested for diabetes, numerous appointments with my doc for insomnia and numerous pawn offs by said doc with "depression" which is not a cause but at the same time I couldn't deny it being a symptom of whatever is causing this.

I'm at this moment undiagnosed but have an appointment with a gastroenterologist forthcoming. The letter only states the bringing of a urine sample. For clarity, I live in the UK and the appointment is through the NHS.

I've been reading a lot and it seems generally that people advise to go gluten mad in the run up to testing but I'm in a bit of a problem situation. I have major exams in october and I also work full time as an accountant. I pretty much need to be sharp for most of the day. If I go gluten again I will no doubt have severe issues with tiredness/lethargy and my friend, the brain fog. Plus the gluten-free diet thus far seems to be giving me some relief albeit I've not cracked it 100% as I am still getting the fog - as I write this in fact.

So my situation is to leave it undiagnosed and follow a gluten free diet and then perhaps revisit the doc for a test post exams or do the test now without a guarantee that it's going to come up positive. Any thoughts?

[one more mile]

Lucky for you you live in a country where the doctors figure it out faster then here in the US.

Personally for me the best test was to get off the stuff and see the results. I have changed so much for the better that people all around me can see it.

Maybe I am just getting older and smarter but if something poisons me I stop eating it.

Brain fog was a big issue for me also. Check my profile for my other symptoms.

[RiceGuy]

One thing I know helps with brain fog, sleep issues, fatigue, mood, etc, etc is a sublingual methylcobalamin (active form of vitamin B12). I'd suggest at least 3mg per day, spread out throughout the day if possible.

A good strong B-complex might also be a good idea for you.

[ang1e0251]

I really rely on the B12. That was good advice.

I am self diagnosed. I did not have any testing and won't go back on the gluten for it now. If my livelihood depended on me being sharp, I probably would do just as you thinking of doing. The brain fog is awful and I felt stupid all the time. I'm not sure I would have enough brain on gluten to do accounting and testing.

[BigDogz]

I really rely on the B12. That was good advice.

I am self diagnosed. I did not have any testing and won't go back on the gluten for it now. If my livelihood depended on me being sharp, I probably would do just as you thinking of doing. The brain fog is awful and I felt stupid all the time. I'm not sure I would have enough brain on gluten to do accounting and testing.

I've read this thread with interest as I'm currently without a diagnosis...except that I went gluten-free for one month with a complete and dramatic resolution of symptoms and then had an equally complete and dramatic return of symptoms when I tried going gluten again. So, I guess you could say I'm self-diagnosed, as well.

One more mile...I looked at your symptom list on your profile and felt as though I was reading about myself, with the exception of the alcoholism part. If I have two drinks per year it's a miracle. I had a few symptoms, though, in addition to those you listed:

Dizziness/poor balance

Muscle weakness/difficulty walking

Muscle cramps

Muscle twitching

Pins and needles sensations in my hands and feet

Extreme mood swings/crying for no reason

Easily irritated/angered

Achy, arthritic-like joints

Low B12 level

US practitioners recommend B12 levels of 450 or greater. Europeans say we're too conservative and recommend levels of 1,100-1,300. Mine was 250. I started B12 injections and felt better...but only if I took one every day (far more frequently than usually prescribed) and it didn't change my intestinal symptoms in the least. My doc didn't pursue investigating WHY my level was low and still refuses to test me for celiac disease so I'm awaiting the arrival of a home test kit from the UK. I'm hoping it will give me answers. Although, I feel that I proved it already just with the resolution of symptoms while gluten-free. Still, I feel that I need something to take back to my doc and prove it to him, too. Maybe then he'll be more willing to investigate other issues I've been having like see-sawing blood sugars that I feel point to pre-diabetes and blood pressure readings of 143/92 when my blood pressure has always been low. I can really do without the nasty headaches that go along with the blood pressures.

[Leper Messiah]

Guys, thanks for your input.

@ one more mile - Seriously? I thought what with you guys paying privately (at least I think so anyways) for healthcare and being sort of at the cusp of medical advances due to the size of investment you guys put into research that you would be in a better position? I have had to badger my doc for just under a year to get this appointment as he wanted to pursue other "standard" avenues as I mentioned, depression and easy-to-get-rid-of-me diagnoses like that.

I read your symptoms and I must also admit to alcoholism but alcoholism predominantly through the need to get asleep for my job. I'd think 'right, I need a good sleep so I'll get drunk by 7pm and get 12 hours to set me up' - it did get me to sleep but I got a poor quality sleep. It is such a slippery slope to go down and now I only drink on nights out, if that. I can definitely empathize with alcoholics having been one myself, something I never used to be able to do.

@ Rice Guy / ang1e0251 - Thanks for the advice, B12 is something I've never considered. I'll have a look to try and get it from organic natural food sources if possible as I'm not convinced of the quality of half the supplements on the market at the moment - if you know any good sources let me know. Will let you know how I get on - I like testing new avenues and thoughts, anything to rid myself of this bloomin intolerance and to some sort of balance again! Don't know how you guys feel but I feel as if I've so much more to give but this thing just blocks you in any aspect of your life whether it's learning a musical instrument or completing a PHD or whatever.

@ BigDogz - Lol, here's me thinking the US was the epicentre of medical utopia when in fact it seems that it might be the other way around! Watch those kits, I'm not too familiar about them having not used them myself but there has been loads of stuff in the past year on the TV, documentaries etc, about allergy/intolerance testing kits and their accuracy. For example in one documentary someone went to take 3 different tests on the same day spaced close together and got widely different results. I'm with you on the difficulty there is to shove some evidence into the faces of the skeptical docs - I hardly ever went to the doc before, why do I get the feeling he thinks I'm a hypochondriac all of a sudden?! Let me know how you get on, sounds like your on a similar course to myself although I'm not too sure on those B12 injections, can you not get it from other sources like a pill or food? I'm not having a go, just seems a bit extreme - I'm a wuss when it comes to needles lol.

[BigDogz]

Guys, thanks for your input.

@ BigDogz - Lol, here's me thinking the US was the epicentre of medical utopia when in fact it seems that it might be the other way around! Watch those kits, I'm not too familiar about them having not used them myself but there has been loads of stuff in the past year on the TV, documentaries etc, about allergy/intolerance testing kits and their accuracy. For example in one documentary someone went to take 3 different tests on the same day spaced close together and got widely different results. I'm with you on the difficulty there is to shove some evidence into the faces of the skeptical docs - I hardly ever went to the doc before, why do I get the feeling he thinks I'm a hypochondriac all of a sudden?! Let me know how you get on, sounds like your on a similar course to myself although I'm not too sure on those B12 injections, can you not get it from other sources like a pill or food? I'm not having a go, just seems a bit extreme - I'm a wuss when it comes to needles lol.

The US a medical utopia?? ROTFLMAO!!! It might be a medical utopia if you could get physicians to spend enough time and energy on you to actually listen to you and try to diagnose you instead of rushing through appointments and pigeon-holing you into a "throw away" diagnosis. My doctor tried pinning me with a Depression diagnosis, too. He hadn't even listened to my explanation of what was going on for more than hearing me say that I was profoundly fatigued and couldn't work up the energy to do things I normally loved to do. He cut me off with the depression crap before I could even get to the rest of my symptoms and tried to cram the idea of starting antidepressants down my throat. Thankfully, I have a strong, assertive enough personality that I didn't let him push me into stupid crap like that and pushed right back to at least get SOME sort of testing. I don't think he liked it all that much and I'd hazard a bet that's one reason why he's been so adamant about not ordering any further testing - trying to prove that he's the one that wields the power.

Yeah, can't say I'm all that confident about the accuracy of the home test kits but I wanted to try it anyway since I'm having trouble getting "real" testing. As I stated in my last post, the results of the home kit aren't really going to make any difference to me. Even if it turns out negative I'm going back to gluten-free as I felt better and my symptoms completely disappeared. In medicine there's 2 ways to prove something - by testing and by what's known as clinical correlation. Basically, clinical correlation is what the doctors of the past (one could say they were BETTER doctors) had to go by before testing came along. Simplistically, they went by a "if it walks like a duck and quacks like a duck, it must be a duck" kind of diagnosis method. I went gluten-free and the symptoms disappeared. I went back to gluten and the symptoms returned. It looks like Celiac, it acts like Celiac so, as far as I'm concerned it is Celiac.

[one more mile]

Guys, thanks for your input.

@ one more mile - Seriously? I thought what with you guys paying privately (at least I think so anyways) for healthcare and being sort of at the cusp of medical advances due to the size of investment you guys put into research that you would be in a better position? I have had to badger my doc for just under a year to get this appointment as he wanted to pursue other "standard" avenues as I mentioned, depression and easy-to-get-rid-of-me diagnoses like that.

I read your symptoms and I must also admit to alcoholism but alcoholism predominantly through the need to get asleep for my job. I'd think 'right, I need a good sleep so I'll get drunk by 7pm and get 12 hours to set me up' - it did get me to sleep but I got a poor quality sleep. It is such a slippery slope to go down and now I only drink on nights out, if that. I can definitely empathize with alcoholics having been one myself, something I never used to be able to do.

The average diagnosis takes 15 years. Its about the money not he health here. Many Doctors do not belive in gluten intolerance. They are slow to move from what they learned in medical school.

Doctors kept telling me that I has other problems. That's not called sleeping that is passing out. Not a great way to sleep. Thank goodness I now take steps to get good sleep because at one time the booze was what helped me "sleep." I think my gluten intolerance had something do do with my drinking because the times my drinking was the worse I was drinking beer which has gluten in it.

[BigDogz]

I forgot to address the question of getting B12 from other sources such as pills and foods. Yes, B12 can be gotten from these sources...as long as your body is absorbing them. That's one of the catches with celiac disease. The inflamation and damage the gluten is causing to our intestinal tract (where the B12 gets absorbed) is preventing its absorption. From what I've read, many Celiacs have low B12 levels just for that reason. If you can't absorb it from your small intestine the way your body is designed to do, then you have to get it some other way. The only other way is injection. It's entirely possible that once I completely and permanently embrace the gluten-free way that I won't need the injections any longer since my intestine will be healthy enough to absorb it the way it should.

The injections aren't that bad. I use an insulin syringe so the needles are very, very thin and not painful at all. The way my blood sugars have been going lately (climbing higher), I figure I'll eventually be on insulin anyway so I might as well get used to sticking myself.

[RiceGuy]

About the B12 supplements;Yes, the sublingual type (dissolves under the tongue) can work very well. That's the best way to insure absorption, other than injections. It just depends on which you choose, how much your body needs, etc. Some find they need injections to get their levels up. Then the sublingual can be used to maintain the proper level. Again, it depends upon the individual.

The one I have been using is made by Open Original Shared Link. Though it's a tablet, it is a sublingual. There are liquid sublinguals, but I personally have my doubts about their effectiveness, especially when there's malabsorption. My thinking is based on the fact that the liquid can't be held under the tongue very long, so you're going to swallow most of it anyway.

As for getting B12 from food, BigDogz is correct. Plus, it's not just malabsorption, but something called Pernicious Anemia, which is when the stomach doesn't produce sufficient quantities of something called Intrinsic Factor. Without that, you can't absorb B12 from food, making supplementation necessary. But just the malabsorption alone can mean such a reduction in the absorption of nutrients, that the healthiest diet still won't provide what the body needs.

It's not a fun situation, I know. I used to think I'd never need to take supplements, because I eat healthily. Yeah, right! Celiac Disease had other plans for me...

[one more mile]

actully I had most of those also just got tired of writing symptoms. Some I only figured out after I got off the Gluten. Had restless legs syndrome not the pins and needles.

was not tested for bht B12 though so I do not know about that. I thought I had a weak ankle cause I tripped often.

I rarely trip now. come to think of it I have not fallen off my exercise ball either. I was always in constant pain. It just never seemed to stop, for years. Now I have about three bad days a month when it is rainy and windy. Other then that I am pretty happy with the condition I am in right now. Get off the gluten and see if you do not change in a month. the first two weeks you may get worse but by week 3 you really should see some changes. If you do not we will gladly refund all your aches and pains. Just teasing. Hope this works for you.

One more mile...I looked at your symptom list on your profile and felt as though I was reading about myself, with the exception of the alcoholism part. If I have two drinks per year it's a miracle. I had a few symptoms, though, in addition to those you listed:

Dizziness/poor balance

Muscle weakness/difficulty walking

Muscle cramps

Muscle twitching

Pins and needles sensations in my hands and feet

Extreme mood swings/crying for no reason

Easily irritated/angered

Achy, arthritic-like joints

Low B12 level

[Hydrokube]

I get really bad brain fog/fatigue, and I'm almost positive I have Celiac as well. I've been off gluten for nearly a week and yesterday I got exposed accidently and I couldn't concentrate on anything and just wanted to leave where I was at because I felt so drained (as well as strong stomach pains).

I've also been doing a ton of research and it seems that self-medicating (smoking, drinking, drugs, etc) is very common to alleviate the other symptoms. I really feel for all of you with alcoholism, it's a tough road as my dad is an alcoholic and is just now recovering after roughly 15 years. Likewise, I feel worse after drinking beer, and tend to have terrible bowel issues the next day after just 2 beers.

I'm going gluten-free despite what it will do to my diagnosis when I see the doctor and get tested. Honestly, I can't stand feeling this way any longer it's more important to me to be healthy and strong than to get the official stamp.

[ang1e0251]

Just wanted to pipe in that my sleep problems have improved dramatically since I increased my magnesium intake. Low mag. levels can affect sleep as well as a lot of those muscular problems like twitching and restless leg.

[mikehall117]

I live in the UK to and have found getting a diagnosis very difficult. I have suffered with brain fog and fatigue for longer than I care to remember and have been diagnosed with everything from depression to being accused of being plain lazy. In the end I had to diagnose myself and I gathered a lot of evidence in the form of a detailed account of my 26 years of symptoms, including anecdotes about little things such as eating dirt through to full descriptions of my battle with chronic fatigue syndrome. I have also kept a detailed diet diary and log of my current symptoms in graph form. I then made an appointment with my GP and posted the whole lot to her in advance. I saw a GP who was probably only in her late 30's and therefore had covered Celiac as part of her training, as opposed to an older doctor who may have never been taught a thing about it. She was absolutely convinced by my evidence and has at the very least diagnosed Gluten Sensitivity.

I have now been referred to a gastroenterologist (privately not NHS, although it will be the same consultant, just in a posh hospital with free coffee and better chairs) and will be presenting him with all of my evidence too. More importantly I am keeping a very detailed record of my current health including a log of every brand of food I eat along with a 1-10 score of each of my symptoms for each day. Its incredibly revealing and enough to convince even the most skeptical doctor!

With regard to you re-introducing Gluten the simple rule I am following is - how much do I want a diagnosis? I fully expect to be asked to do a Gluten Challenge followed by 6 weeks of Gluten consumption prior to a biopsy. I will do this at a time that suits me and my lifestyle and not before. At the moment I am very busy at work and am feeling better than I have at any point in my life for the past 26 years so introducing Gluten at the moment just isn't an option. It

[Leper Messiah]

@ BigDogz / Rice Guy - I see, hmm that's certainly got me thinking about both B12 and supplementation in general. The only thing that concerns me is the quality of the supplements, the ones in the supermarkets are full of ineffective chemical compositions that are really just a waste of money for people who don't have malabsorption not to mention those that do. You guys got any recommendations / comments? Also can you home test B12 levels, I'd be really interested to put to a trial.

@ mikehall117 - Disregard my comment on diagnosis in the other thread, I commented before I read this post. Yeah I agree with you 100%, I also have an appointment with a gastro-enterologist next month but am bracing myself for a textbook rebuttal. I'm off the gluten as well as some other things that seem to initiate the brain fog like eggs and dairy so even if I get a blood test chances are it's going to be coming back negative. Hope yours goes well, be sure to post when you get feedback.

At the end of the day though it's superb to have a place like this where people can share their experiences, give pointers and help each other. I guess it's also good to have the option of self-diagnosis as well.

[BigDogz]

@ BigDogz / Rice Guy - I see, hmm that's certainly got me thinking about both B12 and supplementation in general. The only thing that concerns me is the quality of the supplements, the ones in the supermarkets are full of ineffective chemical compositions that are really just a waste of money for people who don't have malabsorption not to mention those that do. You guys got any recommendations / comments? Also can you home test B12 levels, I'd be really interested to put to a trial.

At the end of the day though it's superb to have a place like this where people can share their experiences, give pointers and help each other. I guess it's also good to have the option of self-diagnosis as well.

I tend to agree with you about supplements that have a bunch of unnecessary crap in them. You also have to be very careful to get dietary supplements that don't contain gluten. Many popular, mainstream medicines use gluten containing fillers as part of their formulas. If you're going to supplement B12 and don't want a lot of other "stuff" mixed in, you should look for a formula that contains only Vitamin B12 (often listed by its chemical name - cyanocobalamin) and carries a gluten-free declaration on the label.

As far as I know, there's no home testing available for B12 levels. Then again, I didn't know there was home testing for celiac disease until I Google'd it. I suppose you could try doing an Internet search for "B12 home test kit" and see what it gets you.

It's absolutely wonderful having a network of people out there that understand what you're going through and how it affects so many aspects of your life, as well give you guidance and support when you're unsure of where to go or what to do. Unless you've been where we have been /are, you really can't get it. I was discussing celiac disease with a co-worker who was interested in knowing what I was going through and another co-worker actually piped in with, "I don't know what you're whining about. You said it yourself, you get better if you avoid wheat. So you can't have a sandwich at lunch like everyone else. Big deal." As politely as I could, I invited him to read the labels for wheat the next time he went shopping for his favorite groceries and tell me how he did. I really didn't think he would do it but about a week and a half later he came back to me and apologized for what he'd said. Figuring he'd prove that celiac disease was "no big deal", he took up my challenge and grocery shopped as though he was a Celiac. I thought I'd die laughing when he told me, "I checked everything on my list and the only things that checked out OK were the butter and the eggs! I don't know how you do it, giving up so many foods."

The hardest part for me is the social implications. My community holds a large Fellowship Picnic each year and everyone brings a covered dish. I can't be sure what does and doesn't contain wheat (or is cross-contaminated) so I end up avoiding everything but what I made myself and the open-pit chicken that's provided by the community leaders. I can't eat at parties for the same reason and eating out with friends can be difficult, especially if you're traveling and aren't familiar with a certain resident's cuisine. At work, we have corporate reps that bring lunch or breakfast to us while they give us their pitch and I can't eat 95% of that, either. It's hard to explain to everyone you meet why it is that you're not eating.

[Leper Messiah]

Ah right cool I'll give it a try and see if it makes a difference, I've been gluten/dairy free around 2 weeks now and my stomach seems to be ok now along with my bowel process in general so this seems to have sorted this out, I don't get that worried that I'll never have 'x' food/drink again so I'm thinking I'll take this on for the long term in any case - I did try the raw food diet for a few weeks but energy levels were even worse than before. Hopefully this points to B12 deficiency which the raw food diet would have exacerbated and that supplementation solves the chronic fatigue/brain fog issue and then, touch wood, I'll feel like myself again and might go back on raw food.

Yeah I definitely agree about the social implications, dinners out for me is a particular problem especially where I live - no celiac friendly restaurants. I do think it's workable once people get used to what this means - I mean for example I never heard about celiac til about 3 months ago and I'm fairly certain I have it now so I guess it's the same for other people who are not likely to be too familiar with it or its implications. Best way is to make fun out of celiac if you can, works with anything, I find self deprecation is brilliant for any social situations, it completely defuses the issue and shows you have a sense of humour to boot - win win. Hmm thats got me thinking, how can you make fun of a celiac...

One of the other implications for me has been financial, it costs a fortune to buy the gluten free stuff. Is it the same for you guys or are things just as cheap or cheaper?

[ianm]

One of the other implications for me has been financial, it costs a fortune to buy the gluten free stuff. Is it the same for you guys or are things just as cheap or cheaper?

Stick to the basics like fruit, vegetables and meat for now. It is more cost effective and you get more nutritional bang for the buck. The processed gluten free stuff is expensive so I don't buy too much of that.

I spent 36 years in a gluten induced brain fog comatose like state. It cost me my marriage and almost destroyed my career. It's been five years and life is good now.

[Libbyanne]

I have a question about the vitamin topic. I'm pretty new to this, only 1 week gluten-free. I felt great the first few days and have been "glutened" a couple times (on accident) in the last few so I attribute that to my headaches/fog/chest pains/stomach problems, etc. Anyway, I recently picked up a multi-vitamin (gluten free) and my question is, should I take that and B-12? I've read a little about how gluten-free people need to load up on the vitamins and I'm just not sure what to get.

Any info/advice is appreciated. Thanks!

[BigDogz]

Stick to the basics like fruit, vegetables and meat for now. It is more cost effective and you get more nutritional bang for the buck. The processed gluten free stuff is expensive so I don't buy too much of that.

I agree. I try to concentrate my shopping in the areas normally around the outsides of the grocery store - meat, fruit and vegetable areas. Most cheeses work well but it pays to read labels there as some shredded varieties use glutens to keep the product from clumping.

About the only specially made gluten-free product I use is gluten-free Rice pasta. I found it at Wal-mart. I think it's Boles brand. It cooks up a bit different than wheat-based pasta as it's just a bit firmer than traditional pastas. For a sweet treat I eat Yoplait yogurt or Kozy-shack pudding cups. Both are currently gluten-free and list that designation right on their packaging.

Probably the number one key, though, is not to assume that a product that has been gluten-free in the past will always be gluten-free each time you buy it. Formulas change over time, usually in order to use what ingredients are least expensive, so you need to check what you buy, every time you buy it.