Chronic debilitating brain fog pls help

[bonbena]

Hello all,
Last month, I was officially diagnosed with celiac and immediately began gluten-free diet. Within a week, I noticed most of my GI symptoms were gone (the only one I still have is belching), as well as joint pain and a persistent cough that had been bugging me for a while. However, my main issue has honestly been my fatigue, brain fog, and anxiety. My brain is cloudier than I could ever describe, and I really want to return to my undergrad program I took a leave from, but need to solve this issue. I happen to also have a vitamin d deficiency (level 13), as well as low iron  (non-anemic, ferritin normal, uibc high, iron saturation low). I am currently taking garden of life raw iron, liquid vitamin d 5000 IU, garden of life probiotic,  vitamin shoppe bioactive multivitamin, and 1g solgar l-glutamine, and am considering adding bone broth and/or collagen supplements, if you think thatd help. Given my severe neuro symptoms, is there anything else you could recommend in order to alleviate my mental and cognitive symptoms, based on your experiences? Thanks so much in advance.

[cyclinglady]

Hi!  
 

One month in?  Congratulations on reducing your some of your symptoms.  Know that most celiacs take up to a year to heal.  Brain and nerve issues can take the longest to heal.  
 

Make sure your vitamins and supplements are gluten free.  Certified is best, in my opinion, at least during the early days.  It can be overwhelming to figure out what processed foods and supplements are indeed safe.  So, play it safe!  
 

Consume real food and do not eat out until you are well and willing to get sick again (every exposure to gluten can set you back).  I do not take any supplements.  My anemia (it was really bad) resolved in just two or three months).  But then, I ate a good diet.  If you live on chips and candy, you might very well need supplements.  Unsure?  Ask your doctor to run a vitamin and mineral panel.  No sense supplementing if you are not deficient.  

[bonbena]

36 minutes ago, cyclinglady said:

Hi!  
 

One month in?  Congratulations on reducing your some of your symptoms.  Know that most celiacs take up to a year to heal.  Brain and nerve issues can take the longest to heal.  
 

Make sure your vitamins and supplements are gluten free.  Certified is best, in my opinion, at least during the early days.  It can be overwhelming to figure out what processed foods and supplements are indeed safe.  So, play it safe!  
 

Consume real food and do not eat out until you are well and willing to get sick again (every exposure to gluten can set you back).  I do not take any supplements.  My anemia (it was really bad) resolved in just two or three months).  But then, I ate a good diet.  If you live on chips and candy, you might very well need supplements.  Unsure?  Ask your doctor to run a vitamin and mineral panel.  No sense supplementing if you are not deficient.  

Thanks so much, this is very encouraging

[cyclinglady]

You are welcome!  
 

Take this summer to heal.  I get school.  My freshman returned home the week before her winter final which was done online.  Then her Spring quarter was entirely online.  It was stressful and lonely.  She never “met” any of her classmates online (they were not identified).  Once school was out, she joined a club (society of Women Engineers).  The kids (boys are in it too) did not want to experience loneliness again.  So, they had a Zoom meeting and invited freshmen for questions and answers.  Then my daughter signed up for a freshman pen pal that is in her specialty.  Already, she has made new friends and is off in younger social media places.  
 

If you are going to live on campus, contact the disabilities office [or equivalent).  Get the paperwork in place.  Besides accommodating food, you might get extra time for let’s say, bathroom breaks during an exam if needed.  Maybe early registration too.  Look for a local celiac group in your area. You might get a celiac grandma to take you under her wing (aka homemade gluten-free chocolate chip cookies mailed to you).  😆
 

Set up safe kitchen practices where you live.  The brain fog and anxiety will improve of you can remain gluten free.   
 

 

[knitty kitty]

Hi, Bonbena! 

Welcome to the forum!  Glad to have you!  

Sorry you're feeling so poorly.

Many newly diagnosed Celiacs may not be able to absorb all the vitamins and minerals they need.  Checking for nutritional deficiencies is part of follow up care.  Talking to a dietician or nutritionist may be helpful.  Look into the AutoImmune Paleo Protocol diet which promotes gastrointestinal healing.

It's good you're taking a multivitamin.  You'll benefit from supplementing with the eight B vitamins in the beginning.  They are usually absorbed in the small intestine but because celiac disease damages this area, supplementing for a bit may be beneficial.  The B vitamins and Vitamin C are water soluble, lost easily, and must be replenished every day.  

I found my brain fog, anxiety and fatigue improved dramatically when I began supplementing with extra Thiamine, Niacin and Magnesium.  Thiamine and Niacin are B vitamins.  The mineral Magnesium is needed for these vitamins to work properly.  They are used to provide the brain and body with energy.  Signs you might not be getting enough of these vitamins are the fatigue, anxiety and brain fog you mentioned. 

I found the most benefit came when I supplemented with large doses of thiamine and niacin in addition to my multivitamin.    Once my body's stores had been replenished, I was able to reduce my doses.

My Vitamin D level was very low, too. Getting my Vitamin D level up helped me feel better, too.  

Hope this helps!

Knitty Kitty

 

 

 

[Kate333]

Hi Bonbena.  Welcome to the "club no one wanted to join".😉

The good news is this is a great emotional support group and source of information.  The other good news is you discovered it very early in life so you will likely quickly recover, have minimal damage, and learn early in life how to take care of yourself and listen to your body.  So many people with celiac disease--myself included--suffer and wonder for years but aren't diagnosed until years, even decades later, because docs then never thought to run a simple G antibody blood test.  And probably a good idea to have other family members--even those with no symptoms--also tested as celiac disease is largely genetic in nature.   Also, pls. mention that chronic cough and belching to your doctor.  You could have some acid reflux, allergy, or other issue. Not unusual with celiac disease. 

I am at a similar stage as you:  Recently diagnosed (last last year) and still trying to "learn the ropes" of gluten-free eating, living to reduce my bad indigestion and the other symptoms you describe by learning more about this issue and how to take better care of myself.  But it is a journey...not an overnight fix.   

After diagnosis, I first thought, "Well..darn...I guess I can't eat any products made with wheat, barley, rye...Not fun but no big deal because most breads are so refined, devoid of vitamins/minerals anyway...I really won't miss them and can easily skip them at meals."  Little did I realize that looking for gluten-free-labels and skipping foods obviously made from wheat, barley, and rye is just the first step in learning how to heal your body.. You have to esp. be alert for "cross-contamination" (hidden G ingredients). Even gluten-free-labeled products grown, harvested, or packed in facilities where wheat etc. are also harvested, processed, packed can still contain "trace" (tiny bits) of G (for example, nuts, chips, oatmeal).    I just avoid these risks altogether by skipping most all packaged foods.  I found it very helpful, time-saving to consult a dietician well-versed in gluten issues.

CL and KK have great tips here.  I also learned from them and others here about other (non-G) food allergies.  I take Nature Made multivitamin and Nature's Blend Vitamin B supplements.  Both are labeled gluten-free.

Most important, make sure to not skimp on sleep and seek help (professional counseling, if needed) for reducing your anxiety.  celiac disease aside, insomnia and anxiety does intensify my fatigue, body aches, brain fog AND digestive problems, esp. during this stressful, isolating pandemic.  Be patient with yourself and believe it will get better, comfortable as you learn the gluten-free routine.   It's so important to have someone to talk to about life's challenges.  Headspace is really a great app.  I also find online meditation videos very relaxing, calming.  Michael Sealey is my fave.  A cute young Aussie guy with a very soothing voice. I listen to him to help fall sleep at night when my mind can't stop overthinking/worrying (pretty common these days!).

https://www.youtube.com/user/MichaelSealey      

Best of luck to you on your healing journey!   

 

  

  

 

[GFinDC]

Hi Bonbena,

Since you are low on several vitamins/minerals it is probably true that you haven't been absorbing them properly, or your usual diet just sucks!

Turning that situation around may take months.  While your gut is damaged the absorption of nutrients is impaired.  So eating quality foods and taking a vitamin can help.  Your brain is mostly made of fat cells and nerve cells.  So getting adequate oils and fats in your diet along with veggies, meats, eggs and nuts is good.  Oily fish is high in vitamin D.  That would be salmon, sardines, tuna and mackeral.  They also are good for omega 3's.

I suggest you ditch all dairy for a few months and oats.  They can cause problems for a newly gluten-free person.

Vitamin C can help with absorption of iron.

The B vitamins including B-12 are a good thing to try.  The thing is progress on rebuilding your levels can take months as absorption is impaired while the gut damage exists.  So keeping to a whole foods, 100% gluten-free diet is very important.

[Awol cast iron stomach]

All excellent advice from gluten-free in DC. It took me 2 years and 4 months before I felt I was on the upswing. I like that gluten-free in DC said to avoid milk and oats. I also found I could not tolerate corn and corn dervatives. 

As for vitamins he gave great advice as well. I had to watch vitamin D , all B's and Mg. I've mentioned in the past as a kiddo I never napped, yep it annoyed Mom. I swear after my challenge I seriously slept as much as possible for two years ! 

I stuck with whole foods and a multi vitamin. Keeping tabs on the D, B's and Mg. Once I went back to FT work and on feet all day I had to hydrate and make sure I maintained electrolytes. 

Welcome and glad you joined us . The above posters helped me very much, and I know they will help you too. Learn and heal at this website.

Welcome 

[Kate333]

Thanks, Awol!!  Esp. for your kind encouragement!  I live alone, so it is very comforting knowing others here are rooting for me, have been down that same rocky path and recovered.

Happy 4th!

[ch88]

For me I find the AIP diet helps with brain fog. Alcohol, grain and dairy seem to me to be the most problematic for me. Also you can have a doctor check if your thyroid is working properly.  Thyroid disorders are strongly associated with celiac disease and brain fog. Also try to avoid pollen if you have hay fever.