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Severe brain fog

Kurasz

By Kurasz
in Coping with Celiac Disease

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Kurasz Contributor
Kurasz
Posted

I am currently suffering from severe brain fog. I feel like i ate gluten but can't figure out why. I don't think i ate any gluten, but i seriously can't remember. I know i didnt feel well yesterday and had the abdominal cramping, but i barely remember yesterday at all. I keep forgetting where i put things and i walk into rooms and stop and wonder why. I really don't know whats going on right now. Its almost like im drunk or on drugs. Im very confused. Im afraid i may end up hurting myself by not knowing what im doing. Should i have someone take me to the ER or just lock myself in my bedroom and wait until it goes away? 

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cstark Enthusiast
cstark
Posted

When did you start the gluten free diet? 

Kurasz Contributor
Kurasz
Posted
  • Author

 almost 3 months ago.

cstark Enthusiast
cstark
Posted

It could very well be possible your body is still healing from eating gluten beforehand.  It's like peeling an onion.  Your body is probably just getting rid of another layer of the poison and trying to heal itself.  I have heard those with gluten sensitivity have reactions even 6 months to a year after going gluten free, but the symptoms become less and less.  I was having reactions a month ago even without gluten, and I am about 9 months going gluten free.  Also, your body was used to having gluten for so long that it is not quite sure how to react without it, so you may have some odd moments.  The most important thing to listen to what your body is telling you right now.  It will need some extra sleep and water to help flush out the gluten just as if you were sick with the flu. 

It's hard to not to panic when your body all of the sudden goes crazy on you.  Something I have learned is to take one day at a time, and the times that are good to be thankful for.  Remembering the good times as your body goes through the healing process will may help keep your focus as it did for me.    

Gemini Experienced
Gemini
Posted

Kurasz.........the reason you have extreme brain fog is you are very new to the healing process and what you are experiencing is common.  I had the same problem for awhile and had to give up reading anything longer than 1 page or I couldn't retain the information. Brain fog is a neurological symptom and those take the longest to go away. I can assure you that your body will start to heal and symptoms will slowly disappear but you have to be patient because it really does take longer than most people think. Just make sure you are not unintentionally glutening yourself. Many people make mistakes in the beginning...this is normal.

Having said this....if you feel that you may actually hurt yourself or cannot function at all, you need to see a doctor. You may have another medical condition going on.  If things do not improve very soon, even a little bit, seek medical help.

 

Kurasz Contributor
Kurasz
Posted
  • Author

I just read an article that says taking Tylenol can be fatal to someone with gluten intolerance. I took Tylenol 2 days ago because i had a headache. Is there a chance that the Tylenol is the cause of my brain fog right now?

Gemini Experienced
Gemini
Posted
3 minutes ago, Kurasz said:

I just read an article that says taking Tylenol can be fatal to someone with gluten intolerance. I took Tylenol 2 days ago because i had a headache. Is there a chance that the Tylenol is the cause of my brain fog right now?

Where are you reading this information?  It is not true. Tylenol is not fatal to anyone unless you swallow a full bottle or something along those lines.  Your brain fog is most likely due to Celiac Disease and you have only been gluten-free for 3 months....that is just the beginning of healing!  Make sure you are not ingesting any gluten unknowingly.  Check all your meds, supplements, etc.  Make sure you read actual medical literature, by Celiac experts who have an MD after their name because there are many charlatans out there with crazy ideas.

If you have the ability to read an actual article, then maybe your brain fog isn't as bad as you think?  ;)  Kidding aside.......if you feel funny or really out of sorts compared to your normal, then I would suggest a trip to the doctors to make sure there is nothing else going on.  Brain fog is a b%$@# but it will go away!

 

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Kurasz Contributor
Kurasz
Posted
  • Author

Open Original Shared Link

I can read and remember what im reading, but i feel extremely confused and cant remember conversations i had just minutes ago with my wife. I called the clinic and they put me through to a voicemail. I can sit at home and wait for the fog to clear, but what i am really wondering is if i should go get a blood test for celiacs now. I think i have been gluten free for 3 months now. Just wondering if since i am having a reaction, maybe i can get an accurate blood test.

Fundog Enthusiast
Fundog
Posted

No.  Even though you are reacting at the moment, the odds of getting an accurate blood test after three months without gluten are slim.  All you would get for your troubles is another big medical bill to pay off, and more stress and anxiety.

 

Kurasz Contributor
Kurasz
Posted
  • Author

Thank you very much!

2 minutes ago, Fundog said:

No.  Even though you are reacting at the moment, the odds of getting an accurate blood test after three months without gluten are slim.  All you would get for your troubles is another big medical bill to pay off, and more stress and anxiety.

 

 

cstark Enthusiast
cstark
Posted
12 minutes ago, Fundog said:

No.  Even though you are reacting at the moment, the odds of getting an accurate blood test after three months without gluten are slim.  All you would get for your troubles is another big medical bill to pay off, and more stress and anxiety.

 

How big are the odds?  I tested positive for gluten sensitivity January of '16 and I went gluten free October of '15.  This would be put me at the 3 month range.

Gemini Experienced
Gemini
Posted
34 minutes ago, Kurasz said:

Open Original Shared Link

I can read and remember what im reading, but i feel extremely confused and cant remember conversations i had just minutes ago with my wife. I called the clinic and they put me through to a voicemail. I can sit at home and wait for the fog to clear, but what i am really wondering is if i should go get a blood test for celiacs now. I think i have been gluten free for 3 months now. Just wondering if since i am having a reaction, maybe i can get an accurate blood test.

Vikki Petersen, who wrote that article, is not the most reliable source of information for anything gluten related.  She tends to be an alarmist. She is also not an MD but a chiropractor.  I am not against chiro's either......I have a very good one myself that I see regularly BUT I do not ask him about Celiac Disease.  He is an expert on bones and the spine and not on Celiac Disease.  Yes, I know Vikki's articles appear here on c.com but I don't consider her an expert to be listened to on anything Celiac...sorry, but that is my feeling after reading a number of her articles.

Celiac Disease can cause liver issues.....serious ones. Some people, myself included, had elevated liver enzymes prediagnosis. That went away after a time on the gluten-free diet.  Another very common issue with us. I would imagine if someone had liver disease or a compromised liver/function, they would be instructed not to take Tylenol.  That makes sense. But to say that people with Celiac should not take Tylenol is irresponsible. Not everyone with Celiac has or develops a liver problem. Alarmist information, if you ask me.

You do not know whether you have been glutened or not. A reaction does not mean that you have. You do not know if you even have Celiac. You have to be eating gluten on a daily basis for at least 2-3 months for a blood panel to even be considered. Even with that, you still might be negative so then they would move on to a biopsy.  Diagnosis can take time. If you get that ill when you eat gluten and a diagnosis is not possible, then stay strictly gluten free and wait for healing to do it's thing. It cannot be rushed. I am sorry I cannot offer you any more positive advice but it is what it is.  Have you considered gene testing to see if you even carry one of the main genes?  That might help you being taken more seriously by the medical profession.

Gemini Experienced
Gemini
Posted
18 minutes ago, cstark said:

How big are the odds?  I tested positive for gluten sensitivity January of '16 and I went gluten free October of '15.  This would be put me at the 3 month range.

There is no test for gluten sensitivity, only for Celiac Disease.  It is possible that someone with actual Celiac could still test positive for antibodies after 3 months because it can take up to a year for antibodies to normalize. Did you have a full panel done?

cstark Enthusiast
cstark
Posted
1 minute ago, Gemini said:

There is no test for gluten sensitivity, only for Celiac Disease.  It is possible that someone with actual Celiac could still test positive for antibodies after 3 months because it can take up to a year for antibodies to normalize. Did you have a full panel done?

Just the transglutaminase TGA and TGG.  My TGG levels were off the charts while my TGA level was in the normal range.  And I had to push to get these ones taken.

Gemini Experienced
Gemini
Posted
3 minutes ago, cstark said:

Just the transglutaminase TGA and TGG.  My TGG levels were off the charts while my TGA level was in the normal range.  And I had to push to get these ones taken.

Although an elevated IgG is suspect, that is generally used as a back up when someone is IgA deficient, making the IgA class of antibodies a no go as far as blood work goes.  What were the numbers of the lab ranges and the actual test results?  They should have gone on to complete the panel because that one test alone is not a diagnosis. I just don't understand why people have to fight for blood work to be done. The blood work does not break the bank. You would think, by now, that docs would know you have to do the full panel.  As long as you are comfortable with staying strictly gluten free, having an official diagnosis is not the end of the world. It all depends on your situation.  Have you done any gene testing?  That can provide some useful information.

cstark Enthusiast
cstark
Posted
6 minutes ago, Gemini said:

Although an elevated IgG is suspect, that is generally used as a back up when someone is IgA deficient, making the IgA class of antibodies a no go as far as blood work goes.  What were the numbers of the lab ranges and the actual test results?  They should have gone on to complete the panel because that one test alone is not a diagnosis. I just don't understand why people have to fight for blood work to be done. The blood work does not break the bank. You would think, by now, that docs would know you have to do the full panel.  As long as you are comfortable with staying strictly gluten free, having an official diagnosis is not the end of the world. It all depends on your situation.  Have you done any gene testing?  That can provide some useful information.

The main reason they did not  go for the whole panel I believe is that they were under the assumption that because I had no classic GI symptoms of gluten issues, I did not have gluten "Sensitivity/intolerance".  My TGG was a 12 and the TGA was a 1.  They wanted me to go for the endoscopy but I decided against it because there was no GI issues.  What symptoms I had, and continue to have now and then, are completely neurological.

I have had not any gene testing done, but my mom stated that she is curious to see how she would test out.

Kurasz Contributor
Kurasz
Posted
  • Author
32 minutes ago, Gemini said:

Vikki Petersen, who wrote that article, is not the most reliable source of information for anything gluten related.  She tends to be an alarmist. She is also not an MD but a chiropractor.  I am not against chiro's either......I have a very good one myself that I see regularly BUT I do not ask him about Celiac Disease.  He is an expert on bones and the spine and not on Celiac Disease.  Yes, I know Vikki's articles appear here on c.com but I don't consider her an expert to be listened to on anything Celiac...sorry, but that is my feeling after reading a number of her articles.

Celiac Disease can cause liver issues.....serious ones. Some people, myself included, had elevated liver enzymes prediagnosis. That went away after a time on the gluten-free diet.  Another very common issue with us. I would imagine if someone had liver disease or a compromised liver/function, they would be instructed not to take Tylenol.  That makes sense. But to say that people with Celiac should not take Tylenol is irresponsible. Not everyone with Celiac has or develops a liver problem. Alarmist information, if you ask me.

You do not know whether you have been glutened or not. A reaction does not mean that you have. You do not know if you even have Celiac. You have to be eating gluten on a daily basis for at least 2-3 months for a blood panel to even be considered. Even with that, you still might be negative so then they would move on to a biopsy.  Diagnosis can take time. If you get that ill when you eat gluten and a diagnosis is not possible, then stay strictly gluten free and wait for healing to do it's thing. It cannot be rushed. I am sorry I cannot offer you any more positive advice but it is what it is.  Have you considered gene testing to see if you even carry one of the main genes?  That might help you being taken more seriously by the medical profession.

I am hoping they will do the genetic testing next week. My sister just got tested today. Most of my family has similar problems, just not as severe as mine. I am also going to get my daughter tested because she has similar symptoms, but shes only 2 1/2 years old.

cstark Enthusiast
cstark
Posted
36 minutes ago, Gemini said:

There is no test for gluten sensitivity, only for Celiac Disease.  It is possible that someone with actual Celiac could still test positive for antibodies after 3 months because it can take up to a year for antibodies to normalize. Did you have a full panel done?

Gemini,

We are totally getting off topic, but thanks for the info.  I guess there's more to what I am dealing with.  Thanks you though for the info.  it's greatly appreciated.

Kurasz Contributor
Kurasz
Posted
  • Author

I would like to thank all of you for your help. I guess, I'm really not that concerned about the diagnosis, but i think i would help out for future reference. I am definitely staying gluten free. I really have no choice.

Gemini Experienced
Gemini
Posted
2 minutes ago, cstark said:

Gemini,

We are totally getting off topic, but thanks for the info.  I guess there's more to what I am dealing with.  Thanks you though for the info.  it's greatly appreciated.

We did not get off topic.  It's all relevant. Just because you had no GI symptoms does not mean you do not have Celiac.  Many people, including myself, have had severe neuro symptoms.  They go hand in hand with Celiac. It all depends on how you present with the disease and the variations are many. This is why it is so hard for some to get an official diagnosis.

Whatever you do, I hope the gluten-free diet gives you resolution for your symptoms. If it does, then you may have your answer.

 

cstark Enthusiast
cstark
Posted
Just now, Gemini said:

We did not get off topic.  It's all relevant. Just because you had no GI symptoms does not mean you do not have Celiac.  Many people, including myself, have had severe neuro symptoms.  They go hand in hand with Celiac. It all depends on how you present with the disease and the variations are many. This is why it is so hard for some to get an official diagnosis.

Whatever you do, I hope the gluten-free diet gives you resolution for your symptoms. If it does, then you may have your answer.

 

Symptoms have not resolved completely but are getting better.  Myself and my family are under the conclusion it is not just gluten that is the problem, just a HUGE trigger.  Found this site as a help in understanding what others do in the same situations and how they go about it. :)

Gemini Experienced
Gemini
Posted
12 minutes ago, Kurasz said:

I am hoping they will do the genetic testing next week. My sister just got tested today. Most of my family has similar problems, just not as severe as mine. I am also going to get my daughter tested because she has similar symptoms, but shes only 2 1/2 years old.

Excellent!  I am happy your family is listening to you and if your sister ends up having it, then that puts you into the high risk category, which might make for a clearer diagnosis, of sorts.  The 2 1/2 year old might be a difficult test because it can be hard to get accurate results in one so young.  I think the DGP, both IgA and IgG versions, do a better job of catching the younger ones. If not, you can have her re-tested in future.

I wish you good luck on all counts and I really hope you feel better soon!  I understand your frustration...we all were there at some point.

Kurasz Contributor
Kurasz
Posted
  • Author
9 minutes ago, Gemini said:

Excellent!  I am happy your family is listening to you and if your sister ends up having it, then that puts you into the high risk category, which might make for a clearer diagnosis, of sorts.  The 2 1/2 year old might be a difficult test because it can be hard to get accurate results in one so young.  I think the DGP, both IgA and IgG versions, do a better job of catching the younger ones. If not, you can have her re-tested in future.

I wish you good luck on all counts and I really hope you feel better soon!  I understand your frustration...we all were there at some point.

Thanks again. My sister just told me she lost 9 lbs this week. Shes having problems with the brain fog too. I just told her to go gluten free now that shes been tested and see if it helps. I was throwing up almost every day with bad fevers for 6 months before going gluten free. I felt better after 1 day and still keep getting better, but occasionally i get sick again. I know some of it is from accidentally consuming gluten because im new to this. But this brain fog has me all messed up. I have even glutened myself because of the brain fog. Twice i have tasted my daghters spaghetti-Os because of the brain fog. My wife tries to keep an eye on me, but shes not always here to stop me from doing something stupid.

Gemini Experienced
Gemini
Posted
13 minutes ago, Kurasz said:

Thanks again. My sister just told me she lost 9 lbs this week. Shes having problems with the brain fog too. I just told her to go gluten free now that shes been tested and see if it helps. I was throwing up almost every day with bad fevers for 6 months before going gluten free. I felt better after 1 day and still keep getting better, but occasionally i get sick again. I know some of it is from accidentally consuming gluten because im new to this. But this brain fog has me all messed up. I have even glutened myself because of the brain fog. Twice i have tasted my daghters spaghetti-Os because of the brain fog. My wife tries to keep an eye on me, but shes not always here to stop me from doing something stupid.

You know, you both sound like me.  I had vomiting (not every day), extreme nausea like morning sickness, extreme weight loss when I hit the wall with it like your sister. I was already underweight to begin with so it got ugly.  After 3 days on the gluten-free diet, my diarrhea stopped completely, without taking any anti-diarrhea meds.  I knew I had it before my blood work came back positive.  Your family sound like the typical Celiac family so test what you can because you may have just figured it all out.

I hate to tell you that I laughed when I read what you did with the Spaghetti-O's.  After being gluten-free for quite awhile, I slipped up and ate something without even thinking about what was in it so you see......we all do that. I momentarily had a lapse in reason and forgot I had Celiac and had to check everything I put in my mouth. Years of conditioning in eating without thinking is not easily undone. At least you have an excuse of brain fog. I don't know what happened that I did what I did.  I felt so stupid! :blink:

You will get better!  :D

squirmingitch Veteran
squirmingitch
Posted
1 hour ago, Kurasz said:

Thanks again. My sister just told me she lost 9 lbs this week. Shes having problems with the brain fog too. I just told her to go gluten free now that shes been tested and see if it helps. I was throwing up almost every day with bad fevers for 6 months before going gluten free. I felt better after 1 day and still keep getting better, but occasionally i get sick again. I know some of it is from accidentally consuming gluten because im new to this. But this brain fog has me all messed up. I have even glutened myself because of the brain fog. Twice i have tasted my daghters spaghetti-Os because of the brain fog. My wife tries to keep an eye on me, but shes not always here to stop me from doing something stupid.

There's a problem with her going gluten-free now. If the doc wants to do an endoscopy she needs to be eating gluten right up until the endoscopy. Most docs are NOT going to dx based on positive blood work alone!!!! The endoscopy is "the gold standard" for diagnosis. 

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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