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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is The gluten-free Diet Making Me Stupid?
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25 posts in this topic

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

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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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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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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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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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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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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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Thanks y'all for the kind messages. I've started taking lysine to drive off the virus and it's seemed to work - that, or the extra sleep and limits on activity. It's hard being this lazy, but it seems to be working. I've tried the digestive enzymes and vitamin supplements - I'm not entirely sure they do anything but will keep at it. I'm not someone with a lot of patience, and this whole "wait and it will get better" answer isn't easy to take... I'm really just left wondering what triggered this all of a sudden. Seriously - I was FINE, took a trip to Europe and then came back and was screwed up.

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I know!! It is hard to wait to feel better! I am about 6 months in to this whole gluten-free thing and I think I am finally feeling better. Patients is a virtue! That is for sure!! 

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I know!! It is hard to wait to feel better! I am about 6 months in to this whole gluten-free thing and I think I am finally feeling better. Patients is a virtue! That is for sure!! 

.....and a virtue is no virtue untried......lol

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.....and a virtue is no virtue untried......lol

So true!! I like that!

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OK, so it's not the gluten-free diet making me stupid - I'm just stupid and will probably stay that way because I fried my brain with gluten!! What a frightening article. At least now I have a good excuse for being an idiot! Just one more reason to be vigilant about avoiding gluten...

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No, no, no! First of all, you are NOT stupid! And second of all, unless you have had untreated celiac for years and years, your brain fog WILL lift, and you WILL get full cognitive function back! Be vigilant about gluten, yes, but don't just assume you will be in a fog forever. Vitamins can help too, especially B12.

 

My poor Mom had celiac all her life and wasn't diagnosed until she was in her 40's. She had to take B12 shots for the rest of her life, but let me tell you, my Mom was a VERY intelligent lady.

 

And you are too. (((((HUGS)))))

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I was lethargic and spent my weekends sleeping --up to 18 hours of sleep a day, both Saturday and Sunday.  After being gluten free for over 18 months I finally noticed that I was sleeping much less.  Sorry to say, but some things just take longer than others, and we are all different,.... you have to stick with the diet and give your body time to realize that it can stop fighting everything all the time.

 

You are not stupid! You came here and asked your questions and laid out relevant explanations.... nothing stupid there....  

I have found that taking a vitamin B12 supplement helps clear that brain fog.  In fact, when I first started the B12 it was like someone lifted a curtain! No more brain fog!

 

 

 

Also, by the way, thank you!! For helping me to understand that I am NOT alone in this "laziness" --but IN FACT it may be part of the healing process of being gluten free (after being sick for my entire life until recently because I never knew I had celiac disease.).

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OK, I was kidding a little bit about the stupid part, but since I just turned 47 I'm not sure I'm getting much back from the damage that's been done after probably decades of being undiagnosed. According to the article "With grey matter damage, you may have balance issues, problems speaking or sensory symptoms" - which describes me to a T. I've been taking B12 and my blood values are normal for most of the vitamins, but I'll probably have issues with this and bone density (not been tested, but a rarely seen fibular stress fracture from running makes me think mine's low) my whole life because of this.

 

At least I'm stopping the damage being done, but this really makes me think that insurance companies should pay for, and encourage testing for celiac at least, say, once every 5 years if you have a family history of autoimmune as part of a regular physical.

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I was lethargic and spent my weekends sleeping --up to 18 hours of sleep a day, both Saturday and Sunday.  After being gluten free for over 18 months I finally noticed that I was sleeping much less.  Sorry to say, but some things just take longer than others, and we are all different,.... you have to stick with the diet and give your body time to realize that it can stop fighting everything all the time.

 

You are not stupid! You came here and asked your questions and laid out relevant explanations.... nothing stupid there....  

I have found that taking a vitamin B12 supplement helps clear that brain fog.  In fact, when I first started the B12 it was like someone lifted a curtain! No more brain fog!

 

 

 

Also, by the way, thank you!! For helping me to understand that I am NOT alone in this "laziness" --but IN FACT it may be part of the healing process of being gluten free (after being sick for my entire life until recently because I never knew I had celiac disease.).

 

Thank you for that. I have been really down on myself for years for being "lazy." I'm a type-A personality and I feel like I need to "get things done," but often I just don't have the energy. It's easier to deal with and to forgive myself and my body when I know other people are going through the same thing. :) 

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OK, I was kidding a little bit about the stupid part, but since I just turned 47 I'm not sure I'm getting much back from the damage that's been done after probably decades of being undiagnosed. According to the article "With grey matter damage, you may have balance issues, problems speaking or sensory symptoms" - which describes me to a T. I've been taking B12 and my blood values are normal for most of the vitamins, but I'll probably have issues with this and bone density (not been tested, but a rarely seen fibular stress fracture from running makes me think mine's low) my whole life because of this.

 

At least I'm stopping the damage being done, but this really makes me think that insurance companies should pay for, and encourage testing for celiac at least, say, once every 5 years if you have a family history of autoimmune as part of a regular physical.

You know my last broken bone was 3 years ago , it was the 2nd time I had broken my wrist, had 2 extensive surgeries on it. When I was all clear to get everything ok'd the Dr. Looked at me and said  "We don't know whats going on with your bones" I looked at him and said " If you don't know, I don't know. Your the expert".  And thats the last time I seen that dr. I told my Dr. What he said and nothing. between miss Dx's and Drs. that don't care. Pffttt! I am kinda feeling the same way. My husband tried to tell me my bathroom problems were stress. I just thought I get stressed out when I eat?? lol 

I didn't know I had a history of Autoimmune , I have the Celiac gene , but none of my family has it that I know of , that is active anyway. Guess I am the "LUCKY" one lol. Sorry for the rant. I hope you feel better soon. I feel your pain. 

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