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 Worse Since Going Gluten-Free?


Fey

Recommended Posts

Fey Rookie

Has anyone else had problems with brain fog getting worse after going Gluten Free?

I've been diagnosed with Fibromyalgia since 2004. I'm not new to brain fog, but that and most of my fibro symptoms hadn't been this bad in a very long time. Fatigue during the day accompanied by racing mind/insomnia at bedtime.

I'm pretty new to the whole thing. This is my 13th day gluten-free, and the symptoms got much better at first, and then I think I got glutened last Wednesday and things have gotten progressively worse since. My migraine (main cause that led me to Celiac) is gone, only leaving behind the occasional headache (usually after I eat).

I bought some Sublingual Vit B last week, along with a good multi vitamin. Eliminated as much dairy as possible from my diet, and watching for soy as well though still having some of that. No make up, no CC from my SO, switched toothpaste, shampoo and conditioner to gluten-free.

Possible culprit could also be Xanax withdrawal since my current brand is not gluten-free and I've only taken 1/4 of my usual dose a day since starting the diet. It's "as-needed" prescription and my anxiety has improved greatly to the point where I almost don't need any at all, and I should be getting a gluten-free brand in 2 days.

I know the answer is probably "it'll take time to heal" but if anyone has any pointers or any experience they'd like to share (i.e. how long your symptoms lasted), please do!


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



Celiac.com Sponsor (A8-M):



txplowgirl Enthusiast

Hi there, welcome to the forum.

I have fibro too. First, you need to toss the Xanax. That is definely glutening you. Replace it with something else pronto. Do you drink a lot of diet drinks? Aspertame is not good for fibro sufferers. Also, are you still using your old pots, pans, and toaster? Might ought to replace those. It was only after I totally eliminated those and the gluten, dairy, soy and aspertame that my brain fog started diminishing. Plus you could be going through withdrawal, which will make you feel worse before you get better. It took almost 6 months before I started seeing results. Hang in there and try to be patient.

Vicky

RiceGuy Collaborator

If the sublingual vitamin B is a liquid, I'd highly recommend switching to a tablet or lozenge type. Make certain it is methylcobalamin too. Source Naturals makes a 1mg and 5mg. Get the 5mg, and take it about an hour before bedtime. Doing this corrected my sleep cycles. Also, get yourself a separate co-enzyme B-complex. Country Life makes one which looks pretty good.

Another thing which helped me a great deal is magnesium. There are numerous reasons why it can help. Start with about 200mg per day, and increase by 200mg every week until headaches or other pains subside. If you take more than your body needs, you will notice a stool softening effect. Other minerals can also play important roles, so you may find a multivitamin/mineral formula helpful too.

Other things to try include flax seed oil (omega-3s) and vitamin D3.

Yes, the meds are likely impeding your recovery. The ironic thing is if you get a gluten-free version, you may not even need it at all. Once you are 100% gluten-free for a while, you may find all the anxiety has gone forever. Many have found this to be true.

Lastly, do eliminate all dairy. You may not know if it is a culprit until it's completely out of your system for awhile. There are always alternatives to dairy products, and if you need suggestions, many members of this board will be able to help.

It sounds to me that you're going to be feeling much better in a relatively short period of time!

Fey Rookie

Hi there, welcome to the forum.

I have fibro too. Do you drink a lot of diet drinks? Aspertame is not good for fibro sufferers. Also, are you still using your old pots, pans, and toaster? Might ought to replace those. It was only after I totally eliminated those and the gluten, dairy, soy and aspertame that my brain fog started diminishing. Plus you could be going through withdrawal, which will make you feel worse before you get better. It took almost 6 months before I started seeing results. Hang in there and try to be patient.

Vicky

Thank you so much!

I don't drink anything diet, and I've cut my regular sugar/sodium intake by a lot but that's still pretty high. With the fatigue, it's hard not to drink some high-caffeine, high-sugar drinks ;)

Not using toaster (nothing to toast. not a huge fan of bread, so until I feel a real craving, not worrying about buying specialty bread or making my own). Pans and pots are getting good scrubs with gluten-free detergent in between uses and my gluten-eating SO doesn't cook very often, though I'm definitely considering a new set. Using mostly new tupperware, though my SO hasn't caught on to the threat of CC yet - he understands my restrictions, but doesn't understand that cooking my steak directly on the grill next to his (that's dripping with glutened sauce) is not a good idea.

I have noticed a lot of changes, and things that slightly affected me before are really doing me in now, like sugar highs and allergies (itchy kind, not GI) after meals. I guess that's a positive for the diagnosis, but still makes me go :\

Fey Rookie

If the sublingual vitamin B is a liquid, I'd highly recommend switching to a tablet or lozenge type. Make certain it is methylcobalamin too. Source Naturals makes a 1mg and 5mg. Get the 5mg, and take it about an hour before bedtime. Doing this corrected my sleep cycles. Also, get yourself a separate co-enzyme B-complex. Country Life makes one which looks pretty good.

Another thing which helped me a great deal is magnesium. There are numerous reasons why it can help. Start with about 200mg per day, and increase by 200mg every week until headaches or other pains subside. If you take more than your body needs, you will notice a stool softening effect. Other minerals can also play important roles, so you may find a multivitamin/mineral formula helpful too.

Other things to try include flax seed oil (omega-3s) and vitamin D3.

Yes, the meds are likely impeding your recovery. The ironic thing is if you get a gluten-free version, you may not even need it at all. Once you are 100% gluten-free for a while, you may find all the anxiety has gone forever. Many have found this to be true.

Lastly, do eliminate all dairy. You may not know if it is a culprit until it's completely out of your system for awhile. There are always alternatives to dairy products, and if you need suggestions, many members of this board will be able to help.

It sounds to me that you're going to be feeling much better in a relatively short period of time!

Thanks so much!

I'll look into those vitamins ASAP. Magnesium and flax seed didn't do anything for me in the past, but I don't know if it was related to absorption issues or not.

I'll need to get a new pillcase as well - I have a 7-day that I use for everything, one medicine in each daily compartment, so all of my meds are very likely CCed if one is. I checked the other pills and have been leaving my refills in their proper bottles, so once I get my Xanax on the 25th, I'll buy a new case too :)

I've already started using almond and coconut milk for drinking and cooking. Only things still getting through are snacks that may contain milk products, as well as supplements. I'll look into getting supplements that are casein-free.

Bobbijo6681 Apprentice

My guess is that you are having a pretty good case of withdrawls...or big CC problems. I would try to really eliminate all traces of gluten, especially CC. I think it is great that your SO is on board with your diet change, and I am sure with a little learning together it will be just fine. Just remember that you only have to deal with 1 day at a time, so breathe deeply and deal with things as they come.

It is a very difficult transition, a very worthwhile transition, but a difficult one none the less.

Korwyn Explorer

Hi Fey,

I did not have 'brain fog' prior to going gluten free. About two weeks after going gluten free it hit me. Typing, spelling, memory, forgetting words and losing my train of thought in the middle of sentences. It really freaked me out and it kept getting worse. It gradually started getting better, and most of the time now (it's been over a year) I'm fairly normal. There is such a thing a gluten withdrawal due to the opioid effect gluten has on the brain. The book 'Dangerous Grains' by Ron Hoggan goes into it in some detail. .... I love google. I was able to find the exact paragraph I was looking for. :)

The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath. If you are a member of this group, the very fact that you are experiencing many of these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawl of detoxification from gluten-derived opiods and brain neurochemical imbalances. The evidence suggests that about 70 percent of celiac patients will experience these symptoms when beginning a strict gluten-free diet.

As far as the cookware, if it is non-stick you need to get a second set for gluten free cooking, or replace with stainless steel. Also shared cutting boards are a no-no, and if there is any gluten containing flour used in the kitchen is HAS to go. It is virtually impossible, no matter how careful, to keep a mixed gluten kitchen if gluten bearing flours are in use.

And as several people have said, you can't take the Xanax. Gluten-free is all or nothing. If you are taking 1/4 dose every few days, than you are continually glutening yourself.

Studies show that 50% of people diagnosed with Celiac Disease are also intolerant (i.e. produce anti-bodies for) Casein (the protein in dairy). Many people can experience some healing which may allow them to return small amounts of dairy to their life, but there are no statistics or studies, only personal or anecdotal stories. I would strongly recommend cutting out all dairy. Some things like Galaxy Rice Cheese, and some CoffeeMate creamers say 'non-dairy' but have casein re-introduced during the manufacturing process.


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



Celiac.com Sponsor (A8-M):



Fey Rookie

Thanks for all your answers, guys!

I "decontaminated" my kitchen two weeks ago and separated everything in the pantry (left side is gluten or unknown, right side if gluten-free, all of my stuff is clipped or sealed. There's one bag of regular flour in the kitchen and it's closed and in a completely separate cabinet from my gluten-free flours and other ingredients. We don't really bake, so that full bag has been sitting around for over a year. Not throwing it out due to... relationship compromise. As long as it's closed and sealed, it can stay, if it has to be used, I better not be around, and it better get put in a sealed cookie jar.

Cutting board is being the hardest thing to manage, so I'm not using it directly, just putting things on top of it. I've spent over $400 above normal in groceries/meds/doctors/books over past 2 weeks, so having to put off some of the other things I need (i.e. new pots and pans, new cutting board, new utensils).

And I confess I'm still suffering from a bit of information-overdose, especially with the brain fog. Just today I realized I was using a steak knife to cut through an adhesive :\

RoseTapper Newbie

Just wanted to add to this discussion that you might be suffering from Hashimoto's or low thyroid hormones. Brain fog is one of the main symptoms. If you haven't been tested for it, you might consider having it done. Low thyroid can also cause joint and tendon pain--might have something to do with your fibromyalgia. JMOHO.

Fey Rookie

Just wanted to add to this discussion that you might be suffering from Hashimoto's or low thyroid hormones. Brain fog is one of the main symptoms. If you haven't been tested for it, you might consider having it done. Low thyroid can also cause joint and tendon pain--might have something to do with your fibromyalgia. JMOHO.

Thank you!

I've had my thyroid checked many times and they never found a problem. Next time I get bloodwork from rheumatologist though, I'll ask for a fresh panel.

Also, I do have Lupus as well, so I can explain away all the symptoms just not why they're here *sigh* Stress from going gluten-free, body healing, weather changes, work stress... or gluten/CC. So many options, will have to work harder on preventing CC and hope it clears up before my next doc appt.

Fey Rookie

Hey guys,

Thanks for all the suggestions. Got new cutting board, utensils (bright red & in separate drawer so my SO won't use them by mistake), set of pots and pans.

Working craaaazy hours, but it seems the fatigue is finally on its way out. I had bad C last week, and took a cocktail of lax, acidophilus bifidus, magnesium and fruit... after a painful 12 hours, I felt like new. The brain fog has cleared, the fibro flare has subsided, and I'm taking 1000mg of magnesium before bed.

Went grocery shopping yesterday and after crying at the fact that Larabars were not on sale, everything went pretty well :D Boss is ordering pizza for everyone today, but I'll be gladly eating my packed lunch (bean and potato soup, salad with gluten-free dressing, mortadella slices rolled up, and diced mangoes and kiwis).

sandsurfgirl Collaborator

I went through terrible withdrawals and my brain fog got BAD for a few weeks. It came and went for a couple of months. Now I haven't had it for a very long time. Can't remember the last time I had it honestly.

If you do a search for withdrawals here in the forums you can get long discussions about it. I had them for a few months. It took me about 4 1/2 months to start feeling good and then in month 6 I started feeling really good. I'm in month 7 now and I feel pretty great. Not 100% but pretty awesome most days. I'm working out everyday, have plenty of energy and feel "normal."

sickchick Community Regular

Has anyone else had problems with brain fog getting worse after going Gluten Free?

I've been diagnosed with Fibromyalgia since 2004. I'm not new to brain fog, but that and most of my fibro symptoms hadn't been this bad in a very long time. Fatigue during the day accompanied by racing mind/insomnia at bedtime.

I'm pretty new to the whole thing. This is my 13th day gluten-free, and the symptoms got much better at first, and then I think I got glutened last Wednesday and things have gotten progressively worse since. My migraine (main cause that led me to Celiac) is gone, only leaving behind the occasional headache (usually after I eat).

I bought some Sublingual Vit B last week, along with a good multi vitamin. Eliminated as much dairy as possible from my diet, and watching for soy as well though still having some of that. No make up, no CC from my SO, switched toothpaste, shampoo and conditioner to gluten-free.

Possible culprit could also be Xanax withdrawal since my current brand is not gluten-free and I've only taken 1/4 of my usual dose a day since starting the diet. It's "as-needed" prescription and my anxiety has improved greatly to the point where I almost don't need any at all, and I should be getting a gluten-free brand in 2 days.

I know the answer is probably "it'll take time to heal" but if anyone has any pointers or any experience they'd like to share (i.e. how long your symptoms lasted), please do!

My brain fog was really bad the first 2 years after going gluten-free. Be patient with yourself!!! :) Excercize helps.

be well! :)xoxo

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.