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Anyone Take Years To Heal Brain Fog And Fatigue?


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#1 Twizzel

 
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Posted 25 September 2011 - 10:21 PM

I've been gluten free for roughly 9 months.

Within 48 hours of going gluten free I noticed I stopped having diaherea and indigestion/acid reflux.

After 3 months I realized my asthma was getting slightly better, that was an unexpected surprise.

After 7 months. I didn't have asthma anymore. I can actually run without and inhaler. I had a very enlarged heart and occasionally get an ultra sound from a cardiologist. He told me my heart was starting to reduce back to a normal size.

Now its been 9 months. Instead of sleeping 12 hours a night I am at about 9-10. I can go slightly longer periods without getting cranky if I happen to miss a meal. I think my memory is getting slightly better.

Its great stuff right? Well, here's my problem. My main reason for going gluten free is that I feel like I am in a brain fog 24 hours a day since I was 13 or so. I am age 32. I've spend more than half my life looking for a cure for this foggyness.

I can't even tell you how hard my life has been trying to explain this mystery illness and having doctors tell me i'm thinking too much. even my family isn't really supportive lately. as much as i try to live normally , this fog is always plaguing me. I've had so many diagnoses of mental illness and put on so many medications only to come to the conclusion that positive thinking, diet and exercise is the best remedy. If I am depressed, its just because I have this illness I can't communicate to anyone easily or seems to not be cured, but makes it really hard to percieve reality. And considering reality is the basic of which we all interact, that pretty important.

Has anyone else experienced something similar to this and had brain fog that taken years to heal after going gluten free? I really hope so. I feel so upset and frustrated and like i've burned all my bridges to my friends and family as far as talking about this. My poor wife has to hear my complain, and I really try to be positive when I can. I am just in a rut lately.

I also can't sleep properly. I feel half awake for most of the night even though I'm sleeping, or I have vivid dreams. And while I do have some increased energy. Trying not to come of as lame, but I feel so hopeless. I feel like maybe I don't even have celiac disease and its all in my head.

See, I was never officially diagnosed with celiac disease. my blood tests came back negative. i asked a gi doc for a biopsy but she told me that I have such an obvious reaction to gluten that I should continue my diet either way, so she wasn't going to do something that invasive.

I feel like I can't trust any doctor anymore. All of my true progress and diagnoses have come from my research, not really any doctor I've seen. and i am so sick of hearing about medications and surgeries that seem unnecessary. Its freaky.

I guess I just am asking someone to give me a story that can give me some hope. Thanks so much for any response.
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#2 yolo

 
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Posted 25 September 2011 - 11:16 PM

I've been gluten free for roughly 9 months.

Within 48 hours of going gluten free I noticed I stopped having diaherea and indigestion/acid reflux.

After 3 months I realized my asthma was getting slightly better, that was an unexpected surprise.

After 7 months. I didn't have asthma anymore. I can actually run without and inhaler. I had a very enlarged heart and occasionally get an ultra sound from a cardiologist. He told me my heart was starting to reduce back to a normal size.

Now its been 9 months. Instead of sleeping 12 hours a night I am at about 9-10. I can go slightly longer periods without getting cranky if I happen to miss a meal. I think my memory is getting slightly better.

Its great stuff right? Well, here's my problem. My main reason for going gluten free is that I feel like I am in a brain fog 24 hours a day since I was 13 or so. I am age 32. I've spend more than half my life looking for a cure for this foggyness.



Hi Twizzel,

I suggest you don't give up hope. Your doctor seems to be correct, especially given all the improvements you have been experiencing being off gluten.

However I can also understand your frustration. You are still healing. The villi can take a long time to get better. Taking probiotics to provide a better intestinal environment and nattokinase to counteract the scar tissue can help immensely.

If that is not enough, (assuming you are not getting CC'd with trace amounts of gluten) you may also have other sensitivities at work in addition to the gluten. Many here are sensitive to milk, corn, fructose, nuts, potatoes/tomatoes/peppers or even other grains etc.

For myself I am very sensitive to high and medium salicylates found in many vegetables, fruits, nuts, herbs and spices--which do bother my sleep and can easily cause brain fog. One sign is a white tongue that h as nothing to do with overdoing sugar consumption (although maple syrup is infinitely better than cane sugar, and cane sugar is far better than beet sugar for someone with this condition--since beets are high in salicylates).

In addition, brain fog can be the result of rampant candida overgrowth or bacterial intestinal dysbiosis. This might be worth checking out if your other investigations don't help. Its especially likely if your tummy is bloated--especially after eating sweets and/or excessive carbs. It too can cause a white tongue in the morning. And definitely brain fog galore and sleep disturbance. Plus often some very offensive gas.

Good luck!

----Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#3 Skylark

 
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Posted 25 September 2011 - 11:36 PM

Don't give up hope. I get fogged when I'm slightly hypothyroid. Everything else will be fine, my TSH will test OK, but I'll be cloudy and unable to think well. Get me on a bit more thyroid and I'm much better.

It did take my mind a year and some high-powered chelated supplements to heal from gluten-caused bipolar. My story is in my profile.
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#4 gigifree

 
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Posted 26 September 2011 - 03:10 AM

I am in the same boat you are. The gluten-free diet has made most of my problems go away, except for a few. I am still fatigued. I am taking an Iron/B12 for this (called Floravital) and probably need to take something else to help me, though doctors are no help. Maybe it just takes time? Hang in there. I am thinking that your hormones may be out of wack. This is what is wrong ith me. YOu might want to get your testerorone and others checked out.
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#5 a1956chill

 
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Posted 26 September 2011 - 03:22 AM

I agree that thyroid issues can cause brain fog and fatigue.Having your doc check your thyroid levels may be in order.
Another cause of brain fog for me is my intolerance of soy.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#6 Katie B

 
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Posted 26 September 2011 - 04:00 AM

Hi Twizzel,

Many of us have residual effects after going gluten-free. While it is sometimes an instant cure lots of people have to investigate further medical conditions, dietary sensitivities and vitamin deficiencies. From what I've heard and experienced, fructose malabsorption can cause the same type of brain fog and while I can't supply you with the link there's definitely a medical study done on this. Other things to look into are vitamin deficiencies like B12 and Iron and as others have mentioned thyroid issues. You can also look into the low FODMAP diet which lets you know what fruits are excessively high in fructose. The good news is that you've made some progress and that you've seen improvement. Just hang in there and take it one day at a time!
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Diagnosed with eczema 1999, IBS 2004, Horner's syndrome 2004, severe anemia (B12) 2006, reactive hypoglycemia 2007, hypopituitarism due to autoimmune attack 2009 (diabetes insipidus - lack of vasopressin, lack of cortisol), potential Celiac Disease - difficulty getting 100% diagnosis but have gone gluten-free and am feeling better.

#7 Bubba's Mom

 
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Posted 26 September 2011 - 09:27 AM

If you are really gluten-free and still experiencing these issues you may have a secindary food intollerance? Also, neurological symptoms seem to take longer to heal so it really could be that you've not fully healed yet.

I recommend keeping a food log. Write down what you eat and any times you are feeling your symptoms more strongly. Remember that it can take a day or two after ingestion to get symptoms. It will take some detective work.
Eating gluten-free versions of gluten foods can expose you to low doses of gluten. Just because a package says gluten-free, doesn't mean it truly is. Having up to 20ppm is allowable and they can still claim gluten-free. If you eat several of these foods a day it will add up.

For me, I found that soy causes those symptoms. A lot of us find there are other foods that we don't tollerate well once going gluten-free. Try eating more whole foods(fruits, veggies, unprocessed meats, dairy if you tolerate it well)and add in one new food every 3or4 days.
Likely suspects are the main allergens, but fructose and salicylates, and things from the nightshade family (tomatoes, peppers, egg plant)can be causes too.
It stinks that we have to do so much of our own detective work, but they just don't have good accurate tests for finding these things.
Best luck to you!
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#8 a1956chill

 
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Posted 26 September 2011 - 04:45 PM

One of the first replies I received when I first started posting in these forums was
"" we have to be our own best detectives""
I have found this to be ones of the truest statements ever written
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#9 Twizzel

 
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Posted 28 September 2011 - 01:06 PM

Thanks for the reponses.

I have pretty much just been eating meat and produce for awhile now. I also only drink water for the most part.

I took out dairy for a few weeks, maybe even a month. I took out soy for a few weeks, but i feel like I don't even eat that many things with soy anyways. I also tried a candida diet for a few weeks.

After really messing with my diet the past 9 months, I have trained myself to pretty much only buy meat and veggies at the grocery store. I'll eat brown rice occasionally, but then I feel like my stomach feels slightly off...but then I think its in my head.

I used to get some cross contamination from pots at my mother's, but I moved and that isn't an issue. My wife love to go out to eat, thats really the only problem. but I usually get a salad with some sort of meat on it.

Aside from the obvoius gluten reaction. All i really learned is that when I over-do it with dairy or whey, that I feel a little worse. But I feel like I'm ok just eating small amounts of it. I think its just as simple as I am eating really healthy and I feel better when I'm eating healthy.

I've had my thyroid checked many times as well as my testosterone. I had low vitamin D at one point. I don't know how extensively the doc checked my vitamin levels. But I am taking an isotonic, high absorbtion vitamin and getting a lot of sun lately.

I was checked for diabetes and hypoglycemia. I had to take my blood sugar everyday and keep a food diary for awhile. But it all checked out.

I do have sleep apnea, but I got a cpap machine (a pressure mask you put on at night) for a few years now and it works great. Its odd because I am young and skinny and have sleep apnea. But I think its because I am somewhat tongue tied, the skin on my tongue connects where it shouldn't and I can't stick my toungue out very far. I think this makes my tongue go too far in the back of my throat when I sleep and bock the airway. The cpap is great for me though.


I don't really belive in vitamins or medications, haha. I feel like consistently putting lab chemicals in your body just can't be good for you. I just try to be diverse with my selection of veggies and meats and hope thats good enough for my body to heal itself. I mean, thats what was here on earth before we made processed foods.

Thank for your responses. I feel pretty good today. I just had a super low point when I wrote this post. I am getting better...sssslllooowwwlly.

I am starting to think that people that get better instantly either [A]-haven't head celiac triggered in their body for that long so they have minimal damage, [B]-aren't celiac, but gluten intolerant so they get better immediately when gluten is out of their body or [C]-their symptoms are caused by antibodies attacking their body, not malabsorbtion...so removing gluten has quick results.

I think nearly all my symptoms are malabsorption related. If I think about my life... they slowly got worse and worse, and now they are slowly getting better that I've taken gluten out. It would be great if I got better and got really fat, haha. I never get fat no matter how much I eat. I would love to be somewhat plump and not shake and freak out when I miss meals. Of course people with weight always envy skinny people. The grass is always greener I guess. Anyways, thanks guys. I'll wait it out. I am slowly having improvements. I just wish I could instantly rid myself of this problem.
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#10 Twizzel

 
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Posted 28 September 2011 - 01:15 PM

I also forgot to mention that I did take supposed anti-candida probiotics when I was on the anti-candida diet. Its a product called "symbion" which I guess is similar to "three-lac". After buying the symbion, I realized I was a total victim of marketing, so I don't know if it was a good product or not. But I think it might have help me digest things a little better.

I've also never noticed white on my tongue, but I guess I dont' look at my tongue too much either. That vegetable reaction you have Yolo is odd, what the heck do you eat if you can't eat those veggies, grains, soy, dairy, gluten...whats left?
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#11 thleensd

 
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Posted 28 September 2011 - 03:27 PM

One of the first replies I received when I first started posting in these forums was
"" we have to be our own best detectives""
I have found this to be ones of the truest statements ever written


^^^^ This. Yes.

Hang in there. It's been 2.5 years for me, and I'm definitely still recovering. The latest puzzle piece for me was to go completely grain-free. It has helped tremendously. *Almost* grain-free and *almost* processed foods free wasn't helping. Now I'm starting to have longer and longer moments of clarity and energy. It started with 5 or 10 minutes, now I've had hours in a row, and I'm getting better. Finally.

Keep trying adjustments. Keep searching for improvements. You're not alone.
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Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.
Grain-free 1/11/11

Blogging Gluten-Free

#12 dilettantesteph

 
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Posted 29 September 2011 - 05:42 AM

Does your wife eat gluten at home? You may be getting cc. Even if she doesn't eat it at home, you can get cc from kissing. You may need a gluten free house, I did. You may need to give up eating out. I did. Since you are at the meat and produce only stage, I would suspect that would be an issue for you.

I couldn't get rid of all my symptoms until I went super gluten free. The brain fog did take awhile to go away, but I think that 9 months would be long enough if gluten free enough, based on my healing. I was 49 and super sick at diagnosis. There are a lot of ups and downs though, which for me had a lot to do with figuring out this diet.

Glad to hear that you were doing better in your update.
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#13 GlutenFreeManna

 
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Posted 29 September 2011 - 07:49 AM

Your story in your first post could have been written by me, except I'm 31 and 19 months gluten free now. Without vitamins your recovery will be much slower than you want. The damage did not happen overnight so it won't be reversed in just a few months, especially since you body is absorbing fewer vitamins and minerals from your food if it's damaged. Keep on doing what you are doing-tryign to eat healthy and be strictly gluten-free and also keep an eye on your thyroid and vitamin levels. If you suspect that you are still getting gluten somehow or you suspect another food intolerances, a food and symptoms journal can be really helpful to figure out what's going on.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#14 healinginprogress

 
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Posted 29 September 2011 - 08:00 AM

I am almost 8months gluten free and JUST had my biopsy done, with only 7-10days on the gluten challenge (supposed to be 6-8WEEKS), and my biopsies were very positive. This tells me...STILL HEALING. And, as I even type, I have brain fog, headache, yesterday I was so bloated, which later turned into foul gas. I feel like I shouldn't still be having symptoms on a daily basis (although the damage has actual caused me to have a rectal prolapse and an intussusception, so it must be pretty extensive damage, as I require surgery). But still...I hate it. I'm SO careful! The ONLY gluten in my new household is fish food, and I'm going to be getting gloves to deal with that :P I'm still investigating my makeup, but what I put on my lips is gluten free. I've tried investigating other things, and I'm going to start again...soy seemed to come up as a possibility.

What I'm getting at, is that if I'm showing damage after 8 months gluten-free, then I think you're symptoms are normal. It's really tough not knowing whether it's gluten damage or something else, though, isn't it?

Also, with regards to grain-free, which a couple of you mentioned. I was really shocked when I went to a dietitian and she had me work with the Canadian Food Guide...wtf? I had completely forgot that we are "supposed" to have 5-7 servings of grains per day. I have started logging my food with myfitnesspal.com (great app and site), and I STILL struggle to get enough carbs, even though I eat lots of veg and some fruits. Grains give us energy, so it MIGHT be worth a shot adding some more grains to boost your energy. I haven't noticed a big difference, but I never thought of things that way. I had practically cut out an entire food group, and regardless of carb content, grains contain nutrients/vitamins that other foods don't...that's why there are different food groups!

Anyways, it's just "food for thought", if you will. I'm still not sold on it, I've never been a huge fan of the food guide, I usually just try to eat carbs, protein, and healthy fats with each meal/snack. But when I looked at it in a different way...the nutritional content...it sort of makes sense!

(PS: when corn is used as a grain, it is part of the grain group, ie. gluten-free corn tortillas)
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#15 yolo

 
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Posted 29 September 2011 - 09:40 AM

Also, with regards to grain-free, which a couple of you mentioned. I was really shocked when I went to a dietitian and she had me work with the Canadian Food Guide...wtf? I had completely forgot that we are "supposed" to have 5-7 servings of grains per day. I have started logging my food with myfitnesspal.com (great app and site), and I STILL struggle to get enough carbs, even though I eat lots of veg and some fruits. Grains give us energy, so it MIGHT be worth a shot adding some more grains to boost your energy. I haven't noticed a big difference, but I never thought of things that way. I had practically cut out an entire food group, and regardless of carb content, grains contain nutrients/vitamins that other foods don't...that's why there are different food groups!

Anyways, it's just "food for thought", if you will. I'm still not sold on it, I've never been a huge fan of the food guide, I usually just try to eat carbs, protein, and healthy fats with each meal/snack. But when I looked at it in a different way...the nutritional content...it sort of makes sense!

(PS: when corn is used as a grain, it is part of the grain group, ie. gluten-free corn tortillas)



I agree--for many of us grains are an important source of vitamins and fibre. However they aren't for everyone. One can get by just fine with root vegetables and squash. Grains were not a major part of the human diet until 15 thousand years ago. Most of our pre-history was without grains.

I agree about taking the extra vitamins. With damage to the villi, it takes a long while before (and if) it heals--so it often is difficult to absorb basic vitamins and minerals.

In addition, This is why fibronylitic enzymes are often needed--to counteract the scar tissue. Pro-biotics are also important to establish better flora as is L-glutamine for healing and soothing the lining of the gut.

Many find digestive enzymes helpful also.
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!




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