Confusion, brain fog and memory problems!

[Jherm21]

Before getting diagnosed 4 weeks ago I started experiencing the most terrifying brain fog and confusion. I have never had these symptoms. It got so bad to the point I have been at my mom's house. A few weeks before celiacs diagnosis I was diagnosed with hypothyroid with no high antibodies.  My endo put me on levothyroxine 25mg after taking it for one week I had severe heart Palps and chest pain so she took me off of it. My levels for tsh were normal.  Just last week my doc checked my thyroid again and the levels of tsh went back up. Is the brain fog and confusion related to thyroid? My numbers were borderline underactive. Also is 27 too low for ferratin levels? My hair started to fall out the last year and a half. What do I do about hair loss?  Anyone help

[Gracey]

Yes I've been having brain fog since as far back as I can remember I also suffer from Depersonlization and Derelization celiac realated? Who knows. Not sure what to tell you just know you're not alone.

[Ennis-TX]

My bring fog got so terrible, my mind would start looping like a broken record on things, things I should know how to do I could not do them, I knew I should but it would not come to me and the issue would loop. I would forget the oddest of things, and get angry and scared. I did a a post on it coming out about it here 

https://www.celiac.com/forums/topic/116028-mental-trauma/

Now days when I get glutened it comes back with a slight confusion and I just mind blank.  I did suffer some brain damage from it where now days I still have issues with math and no longer can do computer programing.

 

[Jherm21]

Thanks for sharing guys! Explaining these symptoms to the doctors you already know their easy answer "you have DEPRESSION!" i dont buy that. I sure do get depresses becauae of it though. In my situation the brain fog has caused depression. I'm not a depresses type person a worry wart maybe. I just wonder how long it will last I started the diet 5 weeks ago. 

[cristiana]

Hi Jherm

I'd try to find out what your B12 levels are like if I were you.  They could really be influencing how you are feeling right now.

Open Original Shared Link

 

[Jherm21]

I got my b12 checked about a week before my diet started so like 5 weeks ago and it was at 385 which they said was normal. But I dont eat the same foods I was use to. Like cereal I ate so much cereal I know that can sometimes have b12 in it. I should probably have it checked now since I started the diet. Maybe thats causing my confusion. Thanks for the suggestion! 

[Ennis-TX]

OH yeah a few useful links to help out

https://www.celiac.com/forums/topic/91878-newbie-info-101/

^ Newbie help for those new to celiac disease

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

^ I posted and I suggest others to post what they take here to give others a idea of where to and what to supplement with.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

^ List of foods companies and places to get foods and supplements

[cristiana]

12 hours ago, Jherm21 said:

I got my b12 checked about a week before my diet started so like 5 weeks ago and it was at 385 which they said was normal. But I dont eat the same foods I was use to. Like cereal I ate so much cereal I know that can sometimes have b12 in it. I should probably have it checked now since I started the diet. Maybe thats causing my confusion. Thanks for the suggestion! 

Hello again

I have read again and again on various sites that some countries - I think Japan is one of them - suggests 500 is a minimum level.

I've got a busy day so can't stay too long to post - sorry - but you might like to read this.  See what it says about older adults (not that you are old, but it mentions 500 again).  I'm always interested in my B12 levels because I get tingling in my face and extremities so try to make sure I have enough.

Open Original Shared Link

There are all sorts of other minerals and vitamins implicated in the health of our minds so I think it's worth doing a bit of online research. 

Omega 3 is also very important.  With regard to iron, do check those levels haven't take a dive.  Women can lose iron stores very quickly sometimes.  

Also, are you getting enough exercise and fresh air? I suffer from fogginess if I spend too much time indoors, esp in front of a screen.  I find I am much more alert after a brisk walk.  

Before I was diagnosed I used to give informal lectures to various clubs. On one occasion I found I couldn't find the right words - I had to keep asking the audience!  It actually turned out to be quite a good evening, good audience participation!  The fogginess sometimes comes back, but when it does I try to make sure I'm not getting glutened, and try to ensure I'm getting enough exercise and sleep and making sure I'm eating right. Always makes a difference.

You haven't mentioned if this is getting you down a bit - but in case it is, this is a great book which deals with how we can get into good habits that will not only counter depression help us to generally feel better in our outlook.

 Open Original Shared Link

Lastly  -hair. I have problems there, never had thick hair but before my diagnosis it definitely got thinner.  There's some debate on the internet about it but I would say my hair does fall out when I am anemic.   Perhaps I just notice it more as I don't have a lot in the first place!  But make sure you are also eating enough protein. My nutritionalist recommends eggs, fish and chicken.   She also says I should really be eating a lot more green leafy veg.   

Bon santé!

[Jherm21]

Thanks for your input. And definitely right about the exercise. I was running 3 miles a day in the summer 7 months ago. I alll the sudden got extreme fatigue and brain fog back in october thats when i knew something was wrong. Maybe I do need more iron and b12 i will get those checked with doc. Have a great day!

[cyclinglady]

All of those symptoms you described could be attributed to celiac disease and your thyroid.  Four weeks into the diet is honestly, nothing.  You need way more time.  Most folks here take one to three years to heal.  That is the reality of celiac disease.  

This is the time to learn the gluten-free diet, take it easy and do some gentle exercise.  Before you know it, your fatigue will diminish and you will be back to running.  

Look to food sources for your vitamin and mineral deficiencies.  

Open Original Shared Link

your ferritin?  Those levels should improve with healing. (Mine was a 2 when diagnosed and I was severely anemic needing transfusions and unable to catch my breath).   Unless you are diagnosed with anemia (low hemoglobin), I would focus on food sources.  Taking  iron supplements should be monitored by your doctor as too much iron is just a bad as too little.  

I wish you well. 

[Pegleg84]

Your vitamin levels and the brain fog in general should get better as you start healing (as Cyclinglady said, 4 weeks is pretty early). However, if your iron and b12 tends to be low (even 8 years gluten-free mine hovers around borderline anemic), it's always good to supplement. Be careful with the iron (talk to your doctor about the right amount to take. You also want to make sure to take it with vitamin c or some orange juice to help with absorption). More b12 is always better.

Get you levels retested in a few months. If they go up (and if your brain fog improves) that should be a sign that your gut is healing.

Good luck!

[Jherm21]

Some updated news, I was put on armour today for hypothyroid. She is starting me out on 15mg because I had heart palps on the levo so she is monitoring me slowly. She said my thyroid was not too underactive but she finally agreed to treat it which she also told me I am not eating enough calories I need to get protein powder? Does anyone recommend this or a brand? Ive lost too much weight already cant afford to lose another lb i am 10lbs underweight. Ive been afraid to eat anything outside of whole foods (meat,veggie and fruit)  are there any true dedicated corn tortillas or chips I can eat. And does anyone know if better made regular potato chips are for sure gluten-free? Never realized how much healing this was all going to take. Makes sense though rome wasnt built over night neither is my trashed thyroid and SI. 

[icelandgirl]

Hi Jherm!

Good for you going back and getting thyroid treatment...hope that starts kicking in soon and you get some relief.

It can be hard to get enough calories with just whole foods, it was for me too.  Highly caloric whole foods that can help are avocados and nuts.  You can add in nut or seed butters for some good calories.  Also, add in more good fats like olive oil to your cooking.  At one point I was putting coconut oil in my coffee just to get calories!  Add butter to your sweet potato, etc.  

Regular Lay's potato chips are gluten free and are yummy!  For a sweet treat, Enjoy Life chocolate and Sun Cups are so good.  I don't have a problem with grains so I do eat rice and breads/bagels made with rice flour.  My current obsession are the Canyon Bakehouse Bagels with Sunbutter!  

Another thing that helped me was setting up an account on fitness pal.  I put in my current weight and that I wanted to maintain weight and found that I needed about 1800 calories a day to do that.  Then I tracked my food for a few days and found it was only getting 1400-1500 calories a day.  Once I corrected that, it really helped.

Hang in there, it does take time...but you will get better.

Hugs!

[Ennis-TX]

Nutra Key V-Pro  and MRM Veggie Elite are both ones I use daily, Pumpkin Seed protein is amazing for recovery due to the fats, zinc, iron, etc. BCAAs will help prevent muscle breakdown so taking them during the night and between meals helps. I also eat a whole lot of fats from nuts, seeds, avocado. For chips I use Beanitos, they are gluten-free certified and packed full of complex carbs, healthy fats, and fiber. Banana chips unsweetened, and nuts are great snacks for helping with keeping on weight. I like to sip on smoothies and make my own homemade icescream with just a ton of fat and protein powder. I also take 2 scoops before bed to help out on putting on weight when combined with nut butter and coconut milk.

[Jherm21]

These all sound like great ideas thanks everyone!

[Jherm21]

Now I have a bad cold, any suggestions on cough drops? Also how does one go about making bone broth? 

[Ennis-TX]

16 minutes ago, Jherm21 said:

Now I have a bad cold, any suggestions on cough drops? Also how does one go about making bone broth? 

Cough Drops have recently been having issues , SO tempted to use test strips to and start testing stuff for the community (Send the money tell me a brand and I will, I keep test strips for my bakery). Anyway I normally buy pacific bone broth from thrive or luckyvitamin who ever has it on sale. You can make your own by boiling the removed bones from meats and skimming it then using the broth. I only ever make beef version as I just buy the others. It tends to have a short shelf life when home made, and I have not even had luck canning it. 

Found these they claim gluten-free on the back, no cerfications, but the blends sound very beneficial Open Original Shared Link

Double check the ingredient pictures on the back, I know as of recently people have been having batch issues with riccola and halls and gluten issues, seems contamination in the factories somewhere.

[kareng]

2 hours ago, Ennis_TX said:

, SO tempted to use test strips to and start testing stuff for the community (Send the money tell me a brand and I will, I keep test strips for my bakery).

There currently is someone doing this with more than just test strips - Gluten Free Watchdog.  

 

Just a word of caution for you - If you start doing this and publishing your "results", you may be sued.  Home tests are not really valid for this type of thing,  as there are too many variables that may make them not valid.  There are lots of legal reasons not to do this, so you may want to consult an attorney first.  In the past, I have seen people misusing the strips and claiming things have gluten that couldn't have gluten. 

[knitty kitty]

Here's one of my favorite articles that explains the brain fog and depression.  A deficiency of vitamin D can cause depression, too.

Open Original Shared Link

And here's another about how Riboflavin can help improve anemia.  

Open Original Shared Link

Hope this helps you find your way

[Posterboy]

Jherm21,

If you are taking Statins be aware they can cause memory problems.

I have not had real memory issues since stopping statins.  And that is about the time I started taking Niacin now that I think of it.  It might just be incidental but now that I think of it I don't believe it was.

That said I wanted to share some great links about confusion. brain fog, and memory problems and how Niacinamide has been shown to help memory issues in mice.

Here is one from Dr. Williams.

Open Original Shared Link

Yes I know he is not a MD but thankfully you don't have to be know something about nutrition.

He presents/report on  some amazing benefits of Niacin lost to modern medicine today.

Niacin helps dementia.

Quoting from the article

"At the end of the study, the diseased mice that were treated with niacinamide performed just as well in memory tests as healthy mice. The niacinamide not only protected their brains from further memory loss, it also restored lost memory function. If this wasn’t exciting enough, niacinamide also improved memory and behavior in the mice without Alzheimer’s."

It should be noted in this study not only did unhealthy mice but healthy mice's memory improved.

Mice are often stand in for human's in models and tend to work the same in trials in humans.

These is explained very well by Susan Hughes in her blog where she asked is it "Dementia or a Niacin Deficiency".

Open Original Shared Link

Where she explains thoughtfully that Dementia is a symptom of Pellagra itself.

Check out this amazing quote from Dr. Saul

"When vitamin B3 or niacin was first added as an enrichment or as a fortification to flour, about half of the people in mental institutions went home. This is not a well-known fact. They were there not because they were mentally ill – because of genetic, environment, or social reasons – but because they were malnourished… "
 

Who ever thought being malnourished could lead to memory issues.

I don't think we think in those terms today.  Everything is genetic where it might be more 50/50 than we think.  Environment (stress/vitamins) and Genetics working against us.

We know we can do something about our Environment (Epi-Genetics) then why we wouldn't we at least try a Vitamin if we thought it might help.

I know it helped my GI problems.  Digestive problems are one of the D's of Pellagra it stands to reason it might help Dementia too one of the other D's of Pellagra.

If you do take the Niacinamide take it at 3/day for at least 3 months.  Your stool will begin SINKING where it probably floats now when/if it is helping your GI problems and you will burp distinctly.

See this article on celiac.com that talks about why Pellagra and Celiac disease often are found in the same person co-morbid.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

Good luck on your journey,

I hope it helps.

posterboy,

 

 

[Jherm21]

Thanks for the info. Im going to try it. Have nothing to lose since ive already alost my memory.