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Pschological Improvement?...


csm170

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csm170 Newbie

Hello, My name is Chad and I have recently been diagnosed with celiac disease. I am terrified....I am not scared of the lifestyle changes of even the possibility of other hidden problems(thyroid, adrenal,ect.). I am scared about whether I will be able to have my brain back. I have been having the symptoms (GI and nutrient defeciency related) for over 10 years. In that time, I have been diagnosed with ADHD, a learning disorder, anxiety, and depression. My memory and ability to think clearly have gotten to the point where I feel almost handicapped. I am a first year pharmacy student and I am terrified that I may be dangerous to my future patients if these problems don't see huge improvement. I will be very greatful to hear what to expect in terms of psychological symptom improvemnt, how patient to be, and what I can do to push things along. I sincerely thank you for any input you can give :)


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Jestgar Rising Star

I am scared about whether I will be able to have my brain back.

Yes!!

Spend some time on the board and you'll see numerous posts from people who've gone back to school to complete degrees they had to abandon when they got sick.

I'm in the process of building up my math background so I can apply to a Biostatistics graduate program. Your brain will come back. :)

IrishHeart Veteran

YES! for 2 years, I couldn't think straight. I called it "vaseline head". Felt like I was drugged/tripping. I would get agitated if I had to balance my checkbook as I kept making errors. I had to check and recheck every single thing I did, couldn't read or comprehend or articulate clearly and had trouble making decisions about simple things like what to eat. I cried trying to make dinner because I couldn't negotiate more than one pot on a stove (too confusing and overwhelming) and even making a shopping list was a monumental task. I became anxious and depressed as well, holding on to my husband's arm when I went outside.

This behavior is nothing like my outgoing, confident, multitasking, organized personality. I kept crying and screaming what the hell is going on??

...that was my brain ON gluten.. :unsure: .this is my brain OFF gluten... :) working just fine and comprehending once more and not feeling like a feverish, frenzied nutcase anymore...I still have a way to go, but I am nothing like the scared, spacey- headed train wreck I was for 3 years. That was hell.

There are many stories of others recovering their brain power on here...it gave me hope and I see it happening for me too!....just hang in there!!

ravenwoodglass Mentor

Be patient, be strict with the diet, take sublingual B12 and remain hopeful. Many have seen depression and anxiety and thought problems resolve. If I could go from not even being able to read or name a fork when it was held up in front of me at 45 to being able to finish my last semester of college with a 4.0 in my 50's anything is possible.

You should be thinking and feeling a lot better soon.

eatmeat4good Enthusiast

I have 2 degrees and had a 4.0 in college.

For 7 years I was tripping on gluten. Told the Dr.'s I had lost 80% of my cognitive ability. They just looked at me blankly. I thought I was crazy and would be forever.

Depression, anxiety, frustration, falling, can't think, spacey, nauseous, took me 3 hours to do one sinkful of dishes at one point. I couldn't organize it in my head to figure out how to do them.

I used to be able to do three things at once, raise a family, work, cook, clean...and I was reduced to a walking zombie.

I used to force myself to play spelling games to "rehab" my brain. At one point, I realized I was a lost cause for sure as I was now unable to spell 3 letter words. My vocabulary decreased severely. I was scared. Like you.

I am 5 months gluten free and I can now think.

I'm not 100% yet, but for the most part, I can now have conversations and not forget what I was saying. My spelling and vocabulary are back. I feel like myself again.

And best of all....it doesn't take me 3 hours to do one sinkful of dishes.

I'm still getting cognitive improvements every single day. Thankfully.

I know what it is like to be scared. I want to encourage you that your brain can recover and psychologically you will improve the longer you are gluten free.

I was as debilitated as you can get. I thought I got schizophrenia at 45. I'm pretty much back to normal now. Hope this happens quickly for you too.

csm170 Newbie

Thank all of you sooo much for replying... Doctors say there will be improvement, but I needed to hear it from people that have been through what I'm going through. I feel hopeful and even excited about taking this head on to get to what's on the other side of treatment. Once again, thank all you for being an inspiration and I am looking forward to getting to know each of you through this blessing of a network!!!

keithceliac2010 Rookie

Thanks to everyone for posting their experience with Brain fog, anxiety, depression, confusion. I, like you Chad am new to the Gluten free family. Been gluten-free for going on 3 weeks. I too, have suffered from chronic severe depression, anxiety, confusion, to the point that menial tasks seemed impossible, especially if that task required deep thought. My brain fog lifted tremendously the first week that i went gluten-free and I am continuing to get the cobwebs out of my brain. Tis almost to good to be true. Feel better physically and mentally than I have felt in over a decade. Thanks for the post Chad.


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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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