Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Brain Fog


Lister

Recommended Posts

Lister Rising Star

so since both my doctor and my gastro are convinced that i do not have celiac disease or any form of intolerancys what else can cause what we refer to as brain fog(stoned like state where you can barely think or look around) i have not drank nor smoked nor any other form of intoxicant has enterd my body, but last night i kept waking up with terrrible terrible gas pains, like sharp very sharp feeling like my side was going to burst and now all day today i am completly dizzy.. what else can cause this because when i google it the only thing that pops up is this forum..


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I get brain fog from my Lyme Disease that is so bad I feel drugged. I've been at the grocery and had to call my husband because I was so disoriented. My kids will make their comments very simple when this happens because I understand little. The family has definately had to adjust to my fogginess.

I also get dizzy, or walk like a drunk.

The gluten-free diet helps me tremendously with my GI symptoms, but I still get them very badly. Yesterday my stomach was killing me, those sharp gas pains that you describe. I was not glutened and did not eat anything new ... it was for no reason. It's been proven that Lyme can affect the GI system.

If you want to get tested, you have to get tested by Open Original Shared Link. The other testing is innaccurate.

You can learn more at Open Original Shared Link, Open Original Shared Link., and Open Original Shared Link.

Lister Rising Star

well hopefullly its not lyme but i would think my docs would have thought of that at some point since they both know im a active camper... is there a cure for lyme disease? the symptoms for it are so wide it seems like another one of those mistery sickness's like candida or gastritis(gastritis is the only thing i have as a diagnosis after a year of beeing sick *fu dx)

really dont thnk its lyme in my case though just because i never had a rash or any of the other early symptoms like joint pain and what not, only probablems for me now for a year is exsessive gas, random constipation, and every once and a while brain fog.. then i guess random buzzing in my ears but that only happens during a panic attack

CarlaB Enthusiast

Doctors NEVER think of Lyme. EVER. They deny it even exists. They are so grossly uneducated on it, it's distressing. I would be more surprised if they had thought of it. My doctor told me I didn't have it even after my blood work came back positive.

It's not a mystery illness because it has a cause -- bacteria. The mystery illnesses are descriptions of a cluster of symptoms -- IBS, Chronic fatigue, fibromyalgia, etc. where they don't know the cause.

It can be complicated to treat, so you really need a specialist to treat it.

I've had it for 35 years and never had joint pain until four years ago. My primary symptoms have always been GI and fatigue. It varies so much from person to person.

Half the people who have it never saw a rash. Also, half never saw a tick. If you camp, I would definately suspect it.

Panic attacks, ears buzzing, weight loss, constipation, diarrhea, brain fog -- all are symptoms. So are sensitivities to food and chemicals.

CarlaB Enthusiast

Symptoms of Lyme Disease

  • The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

  1. Open Original Shared Link at site of bite
  2. Open Original Shared Linkon other parts of your body
  3. Open Original Shared Linkbasically circular and spreading out (or generalized)
  4. Open Original Shared Link, disappearing and recurring
    • Head, Face, Neck

[*]Unexplained hair loss

[*]Headache, mild or severe, Seizures

[*]Pressure in Head, White Matter Lesions in Head (MRI)

[*]Twitching of facial or other muscles

[*]Facial paralysis (Open Original Shared Link)

[*]Tingling of nose, (tip of) tongue, cheek or Open Original Shared Link

[*]Stiff or painful neck

[*]Jaw pain or stiffness

[*]Dental problems (unexplained)

[*]Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

  • Eyes/Vision

[*]Double or blurry vision

[*]Increased floating spots

[*]Pain in eyes, or swelling around eyes

[*]Oversensitivity to light

[*]Flashing lights/Peripheral waves/phantom images in corner of eyes

  • Ears/Hearing

[*]Decreased hearing in one or both ears, plugged ears

[*]Buzzing in ears

[*]Pain in ears, oversensitivity to sounds

[*]Ringing in one or both ears

  • Digestive and Excretory Systems

[*]Diarrhea

[*]Constipation

[*]Irritable bladder (trouble starting, stopping) or Interstitial cystitis

[*]Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

  • Musculoskeletal System

[*]Bone pain, joint pain or swelling, carpal tunnel syndrome

[*]Stiffness of joints, back, neck, tennis elbow

[*]Muscle pain or cramps, (Open Original Shared Link

  • Respiratory and Circulatory Systems

[*]Shortness of breath, can't get full/satisfying breath, cough

[*]Chest pain or rib soreness

[*]Night sweats or unexplained chills

[*]Heart palpitations or extra beats

[*]Open Original Shared LinkHeart blockage

  • Neurologic System

[*]Tremors or unexplained shaking

[*]Burning or stabbing sensations in the body

[*]Fatigue, Open Original Shared Link, Weakness, peripheral neuropathy or partial paralysis

[*]Pressure in the head

[*]Numbness in body, tingling, pinpricks

[*]Poor balance, dizziness, difficulty walking

[*]Increased motion sickness

[*]Lightheadedness, wooziness

  • Psychological well-being

[*]Mood swings, irritability, bi-polar disorder

[*]Unusual depression

[*]Disorientation (getting or feeling lost)

[*]Feeling as if you are losing your mind

[*]Over-emotional reactions, crying easily

[*]Too much sleep, or insomnia

[*]Difficulty falling or staying asleep

[*]Narcolepsy, sleep apnea

[*]Panic attacks, anxiety

  • Mental Capability

[*]Memory loss (short or long term)

[*]Confusion, difficulty in thinking

[*]Difficulty with concentration or reading

[*]Going to the wrong place

[*]Speech difficulty (slurred or slow)

[*]Stammering speech

[*]Forgetting how to perform simple tasks

  • Reproduction and Sexuality

[*]Loss of sex drive

[*]Sexual dysfunction

[*]Unexplained menstral pain, irregularity

[*]Unexplained breast pain, discharge

[*]Testicular or pelvic pain

  • General Well-being

[*]Unexplained weight gain, loss

[*]Extreme fatigue

[*]Swollen glands/lymph nodes

[*]Unexplained fevers (high or low grade)

[*]Continual infections (sinus, kidney, eye, etc.)

[*]Symptoms seem to change, come and go

[*]Pain migrates (moves) to different body parts

[*]Early on, experienced a "flu-like" illness, after which you have not since felt well.

[*]Low body temperature

[*]Allergies/Chemical sensitivities

[*]Increased effect from alcohol and possible worse hangover

Lister Rising Star

also from what i have read the main way to treat it is with antibiotics, my doctor tried antibiotics on me for like 3 weeks when i was first sick and all they did was make everything worse.. i meen i guess it still could be but its not like i will ever acually know since its so hard to diagnose and i cant afford to go to doctors anymore. like i cant even take the risk of going and hoping to get it waved

plus now that i think of it, i did not start camping or really even going outside until after i got sick because when i first got sick i was so afraid i may be dying i was trying to make the most out of life, before getten sick i was a fatty(300+) so i just stayed indoors all day playing video games

starting to think more and more that maybe my friends/family/ 1 of my docs is right and im just crazy and im able to make myself sick with my miind or something

CarlaB Enthusiast

If the antibiotics made you feel worse, that would make it even more suspicious. With Lyme treatment, you feel worse before you feel better. The antibiotics kill off the bacteria, then the toxins that are released make you feel worse.

I just started a new antibiotic and it's kicking my butt!

Why don't you buy "Healing Lyme". It's an herbal protocol for treating it. It's something you could do and won't hurt you even if you don't have it.

IGeneX does the testing. A western blot cost $190.

BTW, I'm not saying you do have it, I'm just saying it's very suspicious ... you asked what it could be, it could be Lyme.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lister Rising Star

what is this healing lyme? is it expensive?

not trying to argue with your response and i do apretiate the thought.

i like number .75... i do tend to get terrrible terrrible hangovers no matter how little i drink.. that could just be hereditary though

is it fatal? is there a cure? or is this just another illness to add to my list of possible bad things.. so far all the possiblitys are all such dark bad illnesses :/

CarlaB Enthusiast

Yeah, I know what you mean. I've been sick for two days over two glasses of wine. I don't drink at all anymore.

Healing Lyme is a book by Buhner. It's about using herbs to heal Lyme. I don't know what the herbs cost. I bought mine from amazon .com.

CarlaB Enthusiast
is it fatal? is there a cure? or is this just another illness to add to my list of possible bad things.. so far all the possiblitys are all such dark bad illnesses :/

You edited ... good thing I scrolled back up, LOL.

It can be fatal, but usually is not if treated. Some people have the herbal protocols really help them. I've even heard of people who can't afford doctors buying animal antibiotics at feed stores ... not that I would personally recommend doing it ... and if you did, you'd have to know what you were doing! I know someone on Lymenet has done that (you can search that site to read about it).

It does get progressively worse, so you want to do something if indeed it is what you have.

Lister Rising Star

hrmm, i have been progressivly getting better i can honestly say that last year i was definatly way way way way way way way way worse then i am now. Its mostly just gastro issuses aka lots of gas(usually very unplesent armoma also) and constipation. the head fog is rare just today happend to be one of those days.. other then that i seem to be fairly healthy.. doctor says i have IBS and possibly a form of gastritis but they ruled out chrons and ulceritivecolitis so they just summed it down to IBS but from what i can tell thats a fake diagnosis but i also have people that swear its real.. i dont know anymore :/ i dont know what to think or what to do. so sick of it all :/

CarlaB Enthusiast

You could be getting better because you are so much more aware of your health than you were before. You are eating better and taking better care of yourself. Your immune system is getting stronger.

I've lived with this for 35 years. Most of that time I've been very healthy ... but back when I didn't know what it was, I was reallly taking care of myself. It was actually stress and antibiotics that triggered the disease to come out of almost remission.

Rachel--24 Collaborator

I got Lyme. I've never seen a tick in my life...let alone a rash or anything to even indicate I'd been bit by a tick. :huh:

I dont know when I got it...I could have had it most my life for all I know. I never got sudden symptoms from it. Some people can have it and not get sick for many years...some people get sick right away...and some people may never get sick at all. Depends on alot of things.

The infection can burden your liver....slow down your ability to detox. The toxic stuff doesnt leave your body as efficiently as it once did...eventually you get sick from too many toxins.

In my case I didnt get sick until I had a couple mercury fillings drilled out....couldnt handle it....couldnt detox it....been very sick ever since. Then I found out about Lyme and how its all connected.

Two days after my fillings came out...I could no longer drink alcohol or smoke a cigarette without feeling totally spaced out. I never got hangovers but suddenly one drink was affecting me big-time. Its been about 3 years since I've had any alcohol and I quit smoking cuz the effects it had on me were too bad.

Major brainfog ever since this happened. It has not been fun. :(

Any kind of toxic illness could lead to brainfog. If you lived in a house with mold issues...you could get the same type symptoms as Lyme. If you were sick from ANY toxic substance you can get those symptoms. It just happens that Lyme has spread alot and is now possibly ahead of AIDS in being the fastest spreading infectious disease in the world.

My Dr. would test anyone with these symptoms for Lyme....but most Dr.'s dont.

bklynceliac Apprentice

I used to get brain fog very badly before I went 100% Gluten-free Casein-free. However I was told by one of the leading Celiac experts (a member of Dr. Green's team at Columbia) that brain fog has no relation to Celiac. Anyway, mine went away when i had been gluten-free for a couple months. But I also think a lot of it had to do with under-eating. I was so afraid of everything that went in my mouth that I had nowhere near enough calories and a lot of the lightheadedness came from that. I think. It still comes back in brief spells but nowhere near where it used to be. So make sure you're eating enough...

mftnchn Explorer

I definitely deal with brain fog, however I haven't conclusively figured out what piece of the puzzle causes it. I have had it off and on since early adulthood. It often goes with fatigue, often connected to chemical sensitivity, also an allergy response to some foods when doing careful fast followed by organic food challenges. It happens with lyme "herx" as well. Seems to happen with asthma too. I have a form of asthma that closes down the peripheral areas rather than the large--so I don't wheeze but get fainter and fainter. Often fatigue and fog is the sign I need to use my inhaler.

Like Rachel said, it may be detox related. Trying different detox approaches seems to help at least.

BTW the test I had for lyme was the fluorescent test available through Bowen (it was part of a research project, and I paid a $200 "contribution"). I have had it done twice. My LLMD told me it is quite sensitive. I haven't had the Igenix testing, but it has been several years now since my last test and I don't know for sure what my LLMD is now using.

For a source for the herbs if you want to try the herbal approach to lyme, you could try Beyond A Century and see if they have them. If they do, usually they are much less expensive than other places.

I really hope you feel better soon, at least have a "parting of the fog" so you can have some clear moments to make decisions.

grey Explorer

Lister,

"starting to think more and more that maybe my friends/family/ 1 of my docs is right and im just crazy and im able to make myself sick with my miind or something"

Don't let people convince you that it's only in your head - there're not living in your body - YOU are and you know if something's not right. I made this mistake and gave up and let people convince me I was "oversensitive" & a hypochondriac.

CarlaB,

You've mentioned that there's a lot of overlap between Lyme & Celiac. I saw some symptoms on the list that I hadn't run across in celiac lists. I have seen it mentioned though, that there are 150+ Celiac symptoms, so I don't know if I just haven't seen as detailed a Celiac list or if I should consider asking for a Lyme test. I had the basic test a few years ago with no response, but I also showed no elevation on Celiac then either.

font=Arial]Tingling of nose, (tip of) tongue, cheek or Open Original Shared Link

[*]Flashing lights/Peripheral waves/phantom images in corner of eyes

  • Ears/Hearing

[*]Decreased hearing in one or both ears, plugged ears

list]

[*]Burning or stabbing sensations in the body

[*]Numbness in body, tingling, pinpricks

[*]Poor balance, dizziness

[*]Increased motion sickness

[*]Lightheadedness, wooziness

  • Memory loss (short or long term)
  • Confusion, difficulty in thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Forgetting how to perform simple tasks (I forgot how to calculate tips!)
    • Increased effect from alcohol and possible worse hangover

Rachel--24 Collaborator

My Dr.'s have said that the brainfog comes from the livers inability to detox....because it is overwhelmed. The toxins dont get eliminated and are redistributed....circulating throughout the body. This is what I was told causes the brainfog.

One of my Dr.s has me taking charcoal to absorb some of these toxins as I'm taking antifungals for candida. Her words were...."When the toxins start circulating and you start feeling that brainfog...this is when charcoal has its "shining moment"...it mops up some of those toxins and really helps with the brainfog."

Rachel--24 Collaborator

mftnchn,

I also get brainfog from chemicals....its the same thing....the toxins have a hard time getting through the liver. Its clogged up from dealing with the toxins which have accumulated from the infections, metals, envirnomental toxins, etc.

Besides the brainfog I also get immune responses (swelling, burning eyes, etc). If a toxin is getting redistributed and circulating through the body...it can trigger the immune system to respond.

CarlaB Enthusiast

Grey, many of the symptoms are similar, but not all of them. People with celiac can have the brain fog, joint pain, muscle aches, etc. that are very common with Lyme Disease.

On the other hand, many of those with Lyme Disease have many of the more typical celiac symptoms. I actually seem like a "classic celiac". I have GI symptoms, weight loss, and gluten sensitivity just like a celiac.

If you were tested by just any old lab, I wouldn't take those results as being negative ... most Lyme testing isn't very sensitive. The Bowen Lab and IGeneX Lab are the two where you would want to get the test from.

Lyme can also have false negatives. Those who are the sickest often stop having an immune response because the immune system is so overworked. If there's no immune response, you can't pick it up from the antibody tests. Usually a round of antibiotics will be enough to get the immune system going again, then retesting can be done.

Also, be sure you see your own results and either have someone who understands the test (both Rachel and I do) or a Lyme literate MD (LLMD) look at your results. Most regular doctors don't know how to read them and treat a person who has had the disease for YEARS the same as someone who contracted it yesterday.

Grey, if you're getting better on the gluten-free diet, you probably have health issues due to gluten intolerance. If you still have health issues on the diet, you probably ought to be tested for Lyme.

Lister Rising Star

getten close to finally tossing the towl on ciggarets almost thru my stockpile as soon as those are up im broke and also want to quit so it should be easy since i wont have them at my disposal. Thinking maybe just maybe (probably not though) but my brainfog and maybe even my stomich problems could just be caused by way to much nicotene and other carsanagens(from the ciggys) in my body since i smoke 12-15 cigs a day and have been for about 2 years now... would be interesting to see if that fixes everything or not(doubt it though) but my gi did say that cigs mess with the stomich alot

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.