Brain Fog

[kwylee]

Just thought I'd mention that you can have neurological problems from gluten and still have B12 levels that are good. Neuro issues are not always due to vitamin deficiencies

I agree that the brain fog and neuro symptoms aren't always (or solely) from vitamin deficiency when it comes to gluten intolerance or Celiac. I'm sure it certainly can be, but in my case, it had to be something else. I believe that gluten has the propensity to attack any organ, including the brain.

A year ago I found out about my intolerance to gluten. But in 2005, my mother died at 73 - complications from the removal of a mysterious benign brain tumor. Even as a kid I could remember her complaints of dizziness, fatigue, feeling "spacey", (her words), joint pain, depression, and the list goes on... All along, her numerous medical tests would come back negative, they always indicated she was very healthy, including vitamin levels. Everyone, even me at times, wondered if she just wasn't the quintessential hypochondriac. Boy, that was a horrible moment when I put it all together the day I got my own gluten news after my bouts with dizziness and fog led me on an unrelenting search for the answers.

What I learned is that my condition is genetic passed from one of my parents, and I truly believe that her brain tumor was the result of a lifetime of ingesting something that her body couldn't handle. I wish I could have solved the mystery in time to help her. She, like me, exhibited only nominal intestinal symptoms - so I guess all those years she complained, no one's thinking immediately leapt to a conclusion of food intolerance, and unfortunately, that may still be the case even today.

[Medusa]

My daughter was getting cc problems from the so-called "gluten free" food at school which we found out about when she got physically sick. Talking to her teacher we discovered that she was way behind in school and was struggling to scrape in half marks in her weekly tests. Apparently she did no work at all after lunch. I started sending a lunch box from home and the results were immediate and amazing - full marks in all the tests and no more lost afternoons! Empirical evidence for hubby if he needs it!

My symptoms were more like MS - clumsy, shaky, terribly tired, poor memory - I'd have notes all over the place to remind me what to do. Some days I'd have trouble speaking properly, almost as if drunk. I am fine on a gluten free diet.

[Medusa]

Ha! Maybe I am just senile! Just remembered that there is some interesting stuff being done in Christchurch, NZ on the possibility that gluten has neurotoxic effects and isn't *just* a gastrointestinal issue... A very quick google revealed this: Open Original Shared Link

I'm sure I remember reading something more recent in the paper though. Now where did I put it?

[kwylee]

Ha! Maybe I am just senile! Just remembered that there is some interesting stuff being done in Christchurch, NZ on the possibility that gluten has neurotoxic effects and isn't *just* a gastrointestinal issue... A very quick google revealed this: Open Original Shared Link

I'm sure I remember reading something more recent in the paper though. Now where did I put it?

Thank you so much for this article! It describes my life with non-celiac gluten intolerance to a tee!

[Calmom]

Knowing that my brain fog is related to celiacs brought tears of relief to my eyes. There used to be days where I would be afraid to drive because I was so spacey. I thought I was going crazy. Like others have mentioned, it felt like my head was stuffed with cotton. I have been clear for a while but it came back the last two days. I went to a bbq over the weekend. I thought I was careful, but I think I got glutened. My only symptoms have been stomach cramping feeling short of breath and brain fog.

[IrishHeart]

I amended my post to say "can" be from vitamin deficiencies as I also agree that gluten acts as a neurotoxin and I did not mean to leave that out! I suffered major central nervous system dysfunction and nerve pain(guess my brain is still coming back to life and I should have added that ) Thanks, guys!!

As for other organs being affected--definitely yes!! My liver, kidneys, bladder...even the skin. I had BURNING skin for the longest time. It's just starting to subside. It's awful and a few others on here have it too.

[Hannah H]

I feel like this post was written just for me! I didn't realize brain fog was a symptom of celiac disease until after I was diagnosed 2 months ago.

For the last year, prior to my diagnosis, I've been having all kinds of issues of 'fog'. I was tired all the time. I felt like it was taking me forever to process thoughts when someone was talking to me. When Ineeded to say something, what I was thinking in my head was all jumbled when itcame out of my mouth. I'd be in the car and for a split second couldn't remember which pedal was the gas and which was the brake. I forgot my sister's middle name. I could spend an entire day sitting and staring off into space and only feel like I'd been there for a minute or two. Crazy things! I tried to explain that to my doctor (not the GI that ended up diagnosing celiac disease) and her response was for me to increase my Adderall or adjust my anti-depressants.

I always labeled myselfas clumsy but I guess a lot of that can be contributed to the celiac disease as well.

My question to those ofyou that have been gluten-free for a long period of time - how long did it take for this to clear up? Like I said - I've been strict gluten-free for 2 months. There are days that my head feels really clear, and others that I feel like I did 6 months ago.

I'm tired of feeling crazy! Any input is much appreciated!

[IrishHeart]

My question to those ofyou that have been gluten-free for a long period of time - how long did it take for this to clear up? Like I said - I've been strict gluten-free for 2 months. There are days that my head feels really clear, and others that I feel like I did 6 months ago.

I'm tired of feeling crazy! Any input is much appreciated!

Everyone heals at different rates. Some people notice this brain fog clearing out right away because it IS a direct result of ingesting gluten and so, once they stop eating it, they see it improve right away. Others take longer because of various reasons, like vitamin or mineral deficiencies or other health issues. I am mostly clear now after 6 months, but I have been ill for a while and so, I expect it to take longer.

Just hang in there and KNOW you are HEALING and this brain fog will lift for you, too!

There are over 300 symptoms associated with celiac disease. Here, take a look. Maybe you will see others on here that will make sense to you. Your "IBS","depression and "adult ADHD"--I see these in your signature -- may disappear as well. As you heal, your medications may need to be adjusted/eliminated. I have a friend who was on adult Ritalin --and once DXed and after going gluten-free, all that stuff went away. I inexplicably became an anxious, sad, insomniac (as I explained in my earlier post)on gluten--BUT not now!!

Open Original Shared Link

(excerpted from an excellent book, BTW)

Realizing these various symptoms and associated disorders and autoimmune disease --which result from the many ways the entire body is impacted by celiac disease--helped me to see that my many horrid symptoms could be EXPLAINED and that went a long way toward calming me down and letting things recover.

Best wishes!!

[IrishHeart]

Knowing that my brain fog is related to celiacs brought tears of relief to my eyes. There used to be days where I would be afraid to drive because I was so spacey. I thought I was going crazy. Like others have mentioned, it felt like my head was stuffed with cotton. I have been clear for a while but it came back the last two days. I went to a bbq over the weekend. I thought I was careful, but I think I got glutened. My only symptoms have been stomach cramping feeling short of breath and brain fog.

Could be some CC occurred? It will pass, hon. Hang in there!!

[Medusa]

Have you looked in the Gluten Intolerance and Behaviour Forum? There's loads of stuff there which strengthens the argument for a neurological connection. I've also heard of research on epilepsy which fails to respond to medication but is relieved by a gluten-free diet.

[IrishHeart]

Have you looked in the Gluten Intolerance and Behaviour Forum? There's loads of stuff there which strengthens the argument for a neurological connection. I've also heard of research on epilepsy which fails to respond to medication but is relieved by a gluten-free diet.

Yes...what she said!!

[IrishHeart]

This is from an older post, but you may find it interesting...

Potential Link Between Celiac Disease And Cognitive Decline Discovered By Mayo Clinic

11 Oct 2006

Mayo Clinic researchers have uncovered a new link between celiac disease, a digestive condition triggered by consumption of gluten, and dementia or other forms of cognitive decline. The investigators' case series analysis -- an examination of medical histories of a group of patients with a common problem -- of 13 patients will be published in the October issue of Archives of Neurology.

"There has been very little known about this connection between celiac disease and cognitive decline until now," says Keith Josephs, M.D., Mayo Clinic neurologist and study investigator. "This is the largest case series to date of patients demonstrating cognitive decline within two years of the onset of celiac disease symptom onset or worsening."

Says Joseph Murray, M.D., Mayo Clinic gastroenterologist and study investigator, "There has been a fair amount written before about celiac disease and neurological issues like peripheral neuropathy (nerve problems causing numbness or pain) or balance problems, but this degree of brain problem -- the cognitive decline we've found here -- has not been recognized before. I was not expecting there would be so many celiac disease patients with cognitive decline."

The next step in the research will be to investigate the measure and nature of the connection between the two conditions.

"It's possible it's a chance connection, but given the temporal link between the celiac symptoms starting or worsening and the cognitive decline within a two-year time span, especially the simultaneous occurrence in five patients, this is unlikely a chance connection," says Dr. Josephs. "Also, these patients are relatively young to have dementia."

Theories to explain the connection between celiac disease and cognitive decline include the following, according to Dr. Murray:

* Nutritional deficiency

* Inflammatory cytokines -- chemical messengers of inflammation that could contribute to problems in the brain

* An immune attack on the brain that may occur in some patients with celiac disease

The cognitive decline that occurred in three of the celiac disease patients studied, according to Dr. Josephs, is relatively unique in its reversal in two of the patients and stabilization in one patient. Typically, cognitive decline continues to worsen, he says. "This is key that we may have discovered a reversible form of cognitive impairment," he says.

William Hu, M.D., Ph.D., Mayo Clinic neurology resident and study investigator, says that the reversal or stabilization of the cognitive symptoms in some patients when they underwent gluten withdrawal also argues against chance as an explanation of the link between celiac disease and cognitive decline.

Currently, the investigators do not know which celiac disease patients are at risk for cognitive decline; this deserves future investigation, says Dr. Hu.

Dr. Murray suggests that recognizing and treating celiac disease early will likely prevent most consequences of the disease, including symptoms in the gut or the brain. For celiac disease patients who have already developed cognitive decline, closely following a gluten-free diet may result in some symptom improvement, he says. For those with cognitive decline without a confirmed diagnosis of celiac disease, he does not recommend a gluten-free diet, however.

Physicians can play an important role in keeping alert to a potential celiac disease and cognitive decline connection, says Dr. Hu.

"For patients who come in with atypical forms of dementia, we need to consider checking for celiac disease, especially if the patients have diarrhea, weight loss or a younger age of onset -- under age 70," he says.

To conduct this case series analysis, the researchers identified 13 Mayo Clinic patients with documented cognitive impairment within two years of onset of symptoms or severe exacerbation of adult celiac disease. All celiac disease had been confirmed by small-bowel biopsy, and any patients for whom an alternate cause of cognitive decline could be identified were excluded from the analysis. Patients included five women and eight men, with a median onset of cognitive decline at age 64 that coincided with onset or worsening of symptoms of diarrhea, the presence of excess fat in the stools and abdominal cramping in five patients. The most common reasons for seeking medical help were amnesia, confusion and personality changes. The average score on the Short Test of Mental Status among the 13 patients was 28 out of 38 possible total, indicating moderate cognitive impairment. Ten patients experienced loss of coordination and four experienced symptoms of peripheral neuropathy. Four patients demonstrated deficiency in folate, vitamin B-12, vitamin E or a combination of these deficiencies, although supplementation did not improve the patients' cognitive decline. Three patients' cognitive decline either improved or stabilized when they completely withdrew from gluten consumption. A brain autopsy or biopsy was completed in five patients, and there was no evidence of Alzheimer's disease or any other well-known causes for dementia.

[Medusa]

Yes...what she said!! LOL

I mentioned this because my daughter suffers seizures when she has been badly glutened which look like epilepsy (she falls unconcious and cramps violently) but according to the medics are something different as they last too long, up to a few hours at worst. Possibly extreme migraines as she gets a visual aura first. The attacks have continued even after the intial "poisoning" (what else can you call a huge plate of ordinary pasta for school lunch!!!) which put her in hospital, although they have got milder, leading me to believe that some serious neurological damage was done which is hopefully now healing to some extent. A lot of the comments in the behaviour forum rang a bell too.

I certainly didn't mean to be funny.

[IrishHeart]

I mentioned this because my daughter suffers seizures when she has been badly glutened which look like epilepsy (she falls unconcious and cramps violently) but according to the medics are something different as they last too long, up to a few hours at worst. Possibly extreme migraines as she gets a visual aura first. The attacks have continued even after the intial "poisoning" (what else can you call a huge plate of ordinary pasta for school lunch!!!) which put her in hospital, although they have got milder, leading me to believe that some serious neurological damage was done which is hopefully now healing to some extent. A lot of the comments in the behaviour forum rang a bell too.

I certainly didn't mean to be funny.

No,no... hon, nor did I --Oh gosh, you misunderstood what I meant!! I meant it as an enthusiatic yes!!with a smile ----to what you said --to definitely go to the section on

neurological and behavior issues for more information.

It's an expression here in the States..as in "ditto" to that!..I suffered terribly from this same thing, falling down and semi-conscious and I was only seconding what you sent. "Yes--what she said!!" means I agree... I did not mean it funny either. None of this is very funny--not to me. Gosh, I feel terrible that you thought I meant it that way. My apologies if it came across that way--it certainly was NOT at all my intention. Please accept my humble apology if you were made to feel I was anything but supportive of your suggestion.

[IrishHeart]

Yes...what she said!!

Edited by Irishheart.

[Medusa]

No worries! I am so used to people thinking I am a nutter for believing my daughter's neurological symptoms are coeliac related I am probably just horribly over-sensitive! It did occur to me that I should have offered some sort of evidence for my statement - it does sound far out! This is a good summary:

Open Original Shared Link

You know what they say - the British and the Americans are "two peoples divided by a common language"! Oh help!

[speedy2056]

Well, my brain fog lifted very quickly when I went on the diet last week. It has returned to a VERY MINOR extent, but nothing anywhere near to what it was before. I got a feeling this is why I'm having some trouble with thinking of words again. The various benefits (no more bloating, better memory, more energy, etc) are all too good to give up, so I won't be going back on gluten any time soon!

[vendeengf]

Whenever I talk about brain fog and celiac, my husband takes on this skeptical aire and scoffs a bit (well, a lot really). Tonight, he explained that everytime I mention it, he remembers the movie Joe Vs the Volcano and in particular the scene where Meg Ryan says, "You didn't get a second opinion for something called a "brain cloud?"" He still doesn't quite "get it." I haven't even been gluten-free yet 2 weeks after all.

I was hoping to get all of your experiences with brain fog in one place so that I can convieniently share it with him, and maybe he'll take it a little more seriously.

Thanks!

hi my name is venessa a brain fog is like a part of ur bain has left u for a little bit if u ask my dad he ur brain goes dead . u need to tell ur husband that its very serios its not good if it happens to much a day u need to get a mri to see if theres calcium on the front of ur brain (my dad does from celiacs ) so it can be very serious

[IrishHeart]

No worries! I am so used to people thinking I am a nutter for believing my daughter's neurological symptoms are coeliac related I am probably just horribly over-sensitive! It did occur to me that I should have offered some sort of evidence for my statement - it does sound far out! This is a good summary:

Open Original Shared Link

You know what they say - the British and the Americans are "two peoples divided by a common language"! Oh help!

I do not think you are nutters at all! SEIZURES are listed as a celiac symptom in many sources. I have had my share of doubters in the medical community myself and it makes us a bit "edgy". I do hope you get the answers/help you are looking for.

[IrishHeart]

One last thought...and this is something doctors need to understand so patients will be diagnosed quickly from neurological manifestations of gluten intolerance:

"Gluten, as a neuroactive compound derived from the intestinal lumen, can permeate either diseased or healthy mucosa, cross the blood-brain barrier and cause psychiatric, cognitive, and behavioral disturbances".

(Odetti, et.al.1998/ quoted in Recognizing Celiac Disease by Cleo J. Libonati, RN)

That's just one study of many done on cognitive dysfunction and gluten intolerance.