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Is The gluten-free Diet Making Me Stupid?


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#1 coffngrl

 
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Posted 26 November 2013 - 11:13 AM

About five weeks ago, I got the call that my blood work showed off the charts positives for celiac. Before then, I figured I'd picked up a bug while traveling and just couldn't shake the diarrhea. I had been a competitive athlete, worked out a lot until the past year when life got in the way and perhaps the stress of a cross-country move contributed to the flare up. Anyhow - since going gluten free, I've been increasingly fatigued, suffered headaches (low-level, lingering, constant) and have been more emotional than usual. Before, I could run around all day. Now, one trip to a big box store and I'm laid up for the rest of the day.

 

I've had all sorts of blood work done: everything is normal except for white blood cells showing a possible indication of viral infection (I haven't seen the numbers). Endoscopy showed complete villous atrophy, but all blood tests for various vitamins (D, B12, iron) showed normal levels, as are CBCs (Hgb is 15).

 

I've been completely paranoid about gluten, have avoided going out to eat, have been subsisting on a diet of mainly white rice, chicken/fish and greens - avoiding other grains and other fodmaps items. Been taking daily vitamins, probiotics and digestive enzymes with meals. While my guts have calmed down, I still can't manage to get any energy. I'm getting increasingly frustrated because my previously active lifestyle is impossible. I've also been having trouble remembering things and at times I have trouble forming coherent verbal sentences, although I can write just fine.

 

I feel isolated, depressed, and lethargic and was wondering if anyone else out there had experienced anything similar that could give me a clue - anything - to try.


Edited by coffngrl, 26 November 2013 - 12:18 PM.

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#2 moosemalibu

 
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Posted 26 November 2013 - 12:53 PM

I can say that I feel the exact same way! I have been gluten-free for almost a month and I am a bodybuilder. I worked out for 2 hours a day 6 days a week. I cannot put coherent sentences together at work and I have mood swings like crazy. I have been eating the same diet as you, rice meat and veggies. I think it's normal to go through gluten withdrawal symptoms (similar to a drug withdrawal I was told). But I want to tell you that I have slowly started to get my energy back and workout again but only for an hour 5 days a week. But you are not crazy! I think it's "normal..."


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Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

Celiac.com - Celiac Disease Board Moderator


#3 bartfull

 
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Posted 26 November 2013 - 01:09 PM

Yes it is gluten withdrawal, and it is not just a psychological thing, it is a very real physical thing. It will get better soon, but it will happen so slowly you won't notice, until one day (soon) you notice that you feel better. Hang in there, and welcome to the forum.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 coffngrl

 
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Posted 26 November 2013 - 01:52 PM

Yes it is gluten withdrawal, and it is not just a psychological thing, it is a very real physical thing. It will get better soon, but it will happen so slowly you won't notice, until one day (soon) you notice that you feel better. Hang in there, and welcome to the forum.

!! And here I was wondering if it was caffeine withdrawal because I gave up coffee to stop the diarrhea - thought the black tea was just not strong enough. The headaches just increase throughout the day until bedtime when I finally have to just give in and take pain killers, which then upset my stomach. Sigh. It's been more than a month without gluten. Please, please tell me this will end soon. I'm not sure how much more I can take of it, and I have to visit the family for the holidays! :D I'm not going to be any fun to be around if it doesn't let up...

 

Thank you all for reassuring me I'm not crazy (well, at least not completely crazy).


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#5 1desperateladysaved

 
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Posted 26 November 2013 - 08:06 PM

Hang in there.  It can be overwhelming at first.  Allow yourself down time when you can.  Your body is working hard a recovery.  It sounds incredible that you have total villi atrophy, but show no deficiencies!  You are starting to repair, whether you feel you are or not! 


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#6 w8in4dave

 
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Posted 27 November 2013 - 06:12 AM

It's been 5 months for me and still no energy!! I think it is just time! Time time time!! I may have a smidgen of my energy back! Altho now I have cut corn out of my diet. I think that helped alot. 


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Recovering Gluten Eater 

DX'd June 17th 2013


#7 bartfull

 
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Posted 27 November 2013 - 08:20 AM

OUCH! No WONDER you're having problems. Coffee withdrawal is every bit (and maybe more) difficult to go through. To be dealing with both at the same time must be awful! :ph34r:


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 coffngrl

 
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Posted 27 November 2013 - 11:55 AM

OUCH! No WONDER you're having problems. Coffee withdrawal is every bit (and maybe more) difficult to go through. To be dealing with both at the same time must be awful! :ph34r:

 

Well, I just got a call from the doctor - it's not the coffee, it's not the gluten-free diet at all. Apparently my immune is so busy trying to destroy my own body that it has let a rampant Epstein Barr infection and CMV rage both at the same time. sigh.


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#9 w8in4dave

 
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Posted 27 November 2013 - 05:27 PM

Ohhh Epstein Barr will do it!! Plus Celiac , plus Caffeine withdrawal ? Wow!! I think You need to rest!! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#10 1desperateladysaved

 
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Posted 29 November 2013 - 07:22 AM

Are you taking supplements, with total villus atrophy, you need all the help you can get?  My health practitioner told me that one job of the villi is to tell the pancreas to fire.  When they are severely damaged they can't do this work.  She advised me to take digestive enzymes to help break down food until the villi heal.

 

It sounds like you got a lot to deal with.  I hope you will be feeling better soon.

 

D


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#11 mommida

 
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Posted 29 November 2013 - 09:01 AM

Well that mystery is solved!  I suggest you try some enhanced water (like Smart water that has magnesium, potassium, and calcium).  You need a little bit more right now to help you get well.  Did you see the panel range for vitamin B12?  It usually has a normal range of at 200 to 300.  I would guess that a vitamin B12 supplement would not hurt right now.  There is no toxic level for the body.  Your body would just flush it out.  That would be "D", which you don't need right now.

I would also suggest you get your thyroid level checked when are feeling better.  (with illness your numbers would show hypothyroid, even if you normally don't need to be on a prescription thyroid med.)

 

Feel better soon!


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#12 squirmingitch

 
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Posted 29 November 2013 - 10:00 AM

You might check with your doc about going on a liquid gluten-free diet. There are some things out there along the lines of Ensure which are gluten-free & your body would have to do much less work to process that. Along consider juicing stuff & having smoothies etc... You need protein & fat to help digest the protein too.

Hang in there! ((((HUGS)))))


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 ItchyAbby

 
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Posted 29 November 2013 - 11:00 AM

I would also add that bone broth would be a good thing for you to be drinking - lots of minerals, very healing for the gut, and gelatin for tissue repair. You can make it with chicken if you are adverse to red meat bones. Just be sure to include some feet. Sounds crazy but it's very tasty! It's not hard to make if you have a crock pot.

 

Time and patience, plus more time and patience. That's what you need now. You body has lots of healing to do. I was runner too up until this year when I got ill. I feel your frustration. Someday you will be able to go for a run again, but right now, that is not the most important thing. Rest, heal, cry if you need too (it makes me feel better!) and find ways to see people so you don't feel so isolated: have good friends over, even just for tea; call family members regularly; join your local GIG chapter when you are up for it. You are right at the beginning which is the toughest time, so just be extra nice to yourself and practice all the patience you can muster.

 

*gentle hug*


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#14 BelleVie

 
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Posted 29 November 2013 - 08:27 PM

Try taking a B vitamin complex. One of the forum members recommended it to me, and it has helped enormously. Also, it takes time to recover, even if all of your vitamin levels seem to be okay. My only issue with my bloodwork was low vitamin D, but for the first two months of gluten free, I was exhausted, depressed, weepy, and felt like crap. I kept thinking I was getting glutened, but now I think it was just my body recovering. Now I'm entering my fourth month of gluten free, and things are definitely getting consistently better. 

 

I think that if you keep with the diet, take a good supplement, and get plenty of rest, there will come a day when suddenly you're having more good days than bad, and eventually you should have a string of good days…and then more good days…and then suddenly you'll feel good again. I hope you feel better soon!


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#15 BelleVie

 
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Posted 29 November 2013 - 08:29 PM

Also, Excedrin Migraine is my wonder drug for migraines. I know it's hard on your body, but when you have a migraine, you will do just about anything to escape from it. 


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