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Celiac Disease and Gluten-Free Forum (Home) > Celiac Disease and Gluten-Free Forum > Celiac Disease - Pre-Diagnosis, Testing & Symptoms
Irishjoe
Hello,

I just registered as a member.

I'm battling, daily, problems with my cognitive processes. It's getting worst. I can't think straight; hate to have coversations because I have difficulty making eye contact, making any sense, and I just don't seem like I can pull myself together to express myself and to have fun and talk about things that normally move me. This is not me! I love sports, intelligent people, and I am passionate about my work. I am behind closed doors in my office and my staff think I am crazy or in a bad mood, and consequently they stay away. I am unproductive and need to get things done.

For several years now, I've noticed when I put myself on a carb-free diet, which of course is gluten free by virtue of eliminating breads and cereals, I am ok. Each time I go on a carb or gluten free-diet and then go back to gluten my symtpoms seem to be more intense. This weekend I thought it would be ok to have some chocolate and candy with my daughter. I had a few other things that could contain gluten, such as coffee creamer, a couple of cookies (definitely has gluten) and I don't even want to go home because it is a chore to look my wife and kids in the eyes (that eye contact thing)!

I've heard about Celiac disease and gluten causing problems, so I've decided to look into it. I do not have the intestinal problems, but, wiht out a doubt my negative cognitive process is related to the carbs and/or gluten that I consume. Is it common to have these neurological symptoms without the gastro troubles?

I'm just hoping to get some of my thoughts validated.
Irishjoe

P.S. How do I use those cool Smilies?
jerseyangel
It is definately possible to have Celiac and not experience gastro. problems. Since you seem to do better when you cut down on wheat, it may be something to look into. If you're thinking about being tested, be sure not to go off gluten at all. That will skew the results. Another approach is to try eliminating gluten yourself for a few weeks and see how you feel. A lot of people have used this diet challange and found that they need to be gluten free. As for brain fog--I was the Queen of it!!! I felt like I was walking around with a bag over my head. Didn't make eye contact either. Had some anxiety--it was like a vicious circle--the good news is that being gluten free now for 6 months, the brain fog is long gone. Good luck with whatever you deceide to do. Oh, and welcome smile.gif . (The smiles are at the left as you post. Just click on the one you want)
CarolynB
Hello

My husband has celiac. He had terrible intestinal problems and almost died befor he was diagnosed.

After checking into the disease I realized that was what was wrong with my daughter as a baby.

She did not have any intestinal problems but she has terrible brain fog. Since she is glutin free that has cleared up.

So gluten very well could be your problem.

CarolynB.
Rachel--24
One of my main symptoms was brain fog. I was completely unable to focus to the point that I sometimes couldn't drive. I also never looked people in the eye during that time...I always looked down. I still dont quite understand that part but it all cleared up on the diet. I had only mild gastro symptoms. I never even mentioned them to my doc since my other symptoms were far more severe.
Nantzie
Yep, you're definitely barking up the right tree. Brain fog, memory and concentration problems. Avoiding people because you either have to look them in the eye, or have a conversation that you might not be able to concentrate on, or both. Sometimes, if I have a lot of gluten, I start noticing that I can't quite control my tongue and start slurring a little. Like my tongue has gotten too wide. I also have insomnia, and get anxiety dreams/nightmares from gluten.

When I first heard about celiac and gluten sensitivity, I found it because I was researching my gastro symptoms. I had never heard anything about gluten causing neuro or psych problems. Now that I know how much gluten can effect all of that, I'd actually say that my symptoms are 80% neuro/psych and only 20% gastro.

So I'm glad you found us here. I hope you start feeling better soon.

Nancy
nettiebeads
Hey Joe!! It sounds like yes, you do have definite gluten related issues. You could stay on gluten, keep a food journal and go through drs to have you officially dx'd. Or you could realize that you have had a positive diet challenge for gluten when you went on the low-no carb diet. I was dx'd just with the diet. It was enough for my dr. But the problem is that I was stubborn and continued to consume gluten in the form of malt (flavorings for cold cereals and in coolers). I didn't understand just what that was and didn't have any overt symptoms like I had with wheat, so I thought I was okay. But it was all I could do to get through the week (and I'm a desk jockey) and was terribly unproductive. Then I started getting neurapathies - mornings I would get out of bed and felt like I was walking on stumps! And the brain fog. One Monday I went back to work and it was all I could do to remember how to run my software accounting program - and it was the same program I had used for 4 years!!!!! But thanks to this forum (and Scott who should be nominated for sainthood) I learned what I was doing to my body. I'm totally gluten-free now and am feeling great and am so much more productive at work. Try the gluten-free diet - what have you got to lose, and look and what you could gain!!!
Annette
darkangel
My brain fog involves not being able to concentrate. I find myself unwilling to read long passages of text - and I love to read - feels kinda like ADHD... I can't stay focused. But the biggest mental thing that bugs me is short-term memory loss. I struggle to remember something that happened or something I said a day or two ago. And I blank out on the names of people I know well. It's frustrating and scary at the same time.
ianm
You sound just like me. The brain fog was crippling and I almost lost everything because of it. I did not have any real gut issues either. I think you have already answered your questions. The low carb diets worked so stick with them.
VydorScope
QUOTE(darkangel @ Dec 13 2005, 07:54 AM) *
My brain fog involves not being able to concentrate. I find myself unwilling to read long passages of text - and I love to read - feels kinda like ADHD... I can't stay focused. But the biggest mental thing that bugs me is short-term memory loss. I struggle to remember something that happened or something I said a day or two ago. And I blank out on the names of people I know well. It's frustrating and scary at the same time.



Yes exactly!!!!!!!!
Irishjoe
QUOTE(CarolynB @ Dec 12 2005, 05:56 PM) *
Hello

My husband has celiac. He had terrible intestinal problems and almost died befor he was diagnosed.

After checking into the disease I realized that was what was wrong with my daughter as a baby.

She did not have any intestinal problems but she has terrible brain fog. Since she is glutin free that has cleared up.

So gluten very well could be your problem.

CarolynB.



Thanks everyone for the validation. 2 days now gluten free and I am actually feeling better already. I think I'll stick with the gluten free diet and get back to life. Does anybody know where I can go to find a list of prescription drugs to avoid in this situation, or are drugs even an issue when it comes to staying gluten free?
nettiebeads
QUOTE(Irishjoe @ Dec 13 2005, 01:38 PM) *
Thanks everyone for the validation. 2 days now gluten free and I am actually feeling better already. I think I'll stick with the gluten free diet and get back to life. Does anybody know where I can go to find a list of prescription drugs to avoid in this situation, or are drugs even an issue when it comes to staying gluten free?

That's the wonderful thing about celiac. No prescriptions. That's one of the reasons I think that drs underdiagnose it. You stay gluten-free by carefully watching what you ingest, watch for cross-contamination, and always be on the lookout for hidden gluten sources - hand lotions and such that contain oat and wheat germ oil. Be very careful when dining out. If you do dine out regularly, the Triumph dining cards are highly recommended (I have a set. Don't leave home w/o them tongue.gif )I also take selenium (gluten-free of course) which helps me with my concentration. You will become a seasoned label reader in no time. And at first it seems intimidating, but like anything else, after awhile it will be second nature. Good Luck!!!
Rachel--24
QUOTE(Irishjoe @ Dec 13 2005, 02:38 PM) *
Does anybody know where I can go to find a list of prescription drugs to avoid in this situation, or are drugs even an issue when it comes to staying gluten free?


Yes you do have to check your meds to make sure they're gluten-free. The delphi list has a list of drugs which are gluten-free but it always best to call the manufacturer and double-check.
i canary
Just in case you need prescription drugs for other things there is a website that has a list of gluten free drugs - always double check with your doctor, pharmacy and/or the drug manufacture itself. www.glutenfreedrugs.com.
biggrin.gif


QUOTE(Irishjoe @ Dec 13 2005, 01:38 PM) *
Thanks everyone for the validation. 2 days now gluten free and I am actually feeling better already. I think I'll stick with the gluten free diet and get back to life. Does anybody know where I can go to find a list of prescription drugs to avoid in this situation, or are drugs even an issue when it comes to staying gluten free?
VydorScope
I just want to add.. Umm...err... what were we talking about agian?
Nantzie
QUOTE(VydorScope @ Dec 13 2005, 07:15 PM) *
I just want to add.. Umm...err... what were we talking about agian?


laugh.gif
darkangel
QUOTE(VydorScope @ Dec 13 2005, 09:15 PM) *
I just want to add.. Umm...err... what were we talking about agian?



Perfect! laugh.gif
jerseyangel
HaHaHa biggrin.gif
ianm
QUOTE(VydorScope @ Dec 13 2005, 07:15 PM) *
I just want to add.. Umm...err... what were we talking about agian?

laugh.gif Sums it all right up. It has been a long time since I have had to say that.
DonnaD
QUOTE(Rachel--24 @ Dec 12 2005, 11:31 PM) *
One of my main symptoms was brain fog. I was completely unable to focus to the point that I sometimes couldn't drive. I also never looked people in the eye during that time...I always looked down. I still dont quite understand that part but it all cleared up on the diet. I had only mild gastro symptoms. I never even mentioned them to my doc since my other symptoms were far more severe.


Hi Rachel

Wow, I discover a new symptom every day on this board! biggrin.gif

This is really odd, I also have a problem looking people in the eye, I always look down or over their shoulder into space behind them, I'm famous for it! Does anyone know what causes this??? ??
I seem to remember that It wasn't so bad when I was doing 'Atkins' for a year or so, (almost all my other symptoms also cleared up then and came back as my diet went down hill!)

I too have the most terrible brain fog and memory problems .I had totally forgotten I am supposed to meeting my sister for lunch today until she rang to remind me. On several occasions I have forgotten to collect my kids from after school activities. Or I go out in the car and then forget where I'm going and why!!
I also can't do mental maths anymore, I can't even remember my times tables... This was a terrible problem at work, I'm a book-keeper! - ohmy.gif

Donna
darlindeb25
unsure.gif Sometimes I wonder if I am getting gluten hidden in something. I have brain fog so often, but I cant figure where I am getting it. Then again, maybe its alzihimers blink.gif . A few weeks ago I told my sweetie that had just hidden something from myself and he says, "What do you mean you hid it?" I explained that when I put something away I might as well realize that it is hidden until I run across it, because the minute it is out of my sight, it's lost. I always put my computer glasses on the keyboard and my bifocals on the dresser because I will never remember where they are otherwise. The only place I could be getting hidden gluten is my vitamins--meds are so hard to read!!!!! dry.gif Deb
jerseyangel
Hi Deb! Haven't talked to you in a while! I don't have the same level of brain fog as I did pre gluten-free, but I think I may have like a permanent low level of it. When I get some gluten, it comes back accutely, but even when I have no other symptoms and am doing fine, I still have to "reach" for words, forget why I'm in a particular room for a few seconds, and I have to remind myself to look people in the eye. I rarely looked people in the eye before, and until reading here that others have the same problem, would never have linked it to Celiac. Does anyone know why this happens?
VydorScope
QUOTE(jerseyangel @ Dec 16 2005, 08:34 AM) *
Hi Deb! Haven't talked to you in a while! I don't have the same level of brain fog as I did pre gluten-free, but I think I may have like a permanent low level of it. When I get some gluten, it comes back accutely, but even when I have no other symptoms and am doing fine, I still have to "reach" for words, forget why I'm in a particular room for a few seconds, and I have to remind myself to look people in the eye. I rarely looked people in the eye before, and until reading here that others have the same problem, would never have linked it to Celiac. Does anyone know why this happens?



Maybe you know alot of ugly ppl? laugh.gif laugh.gif laugh.gif

(sorry could not resist)
jerseyangel
Ya know--I never thought of it that way! Its not me, its them! biggrin.gif
ianm
Ugly people, That's IT! Maybe we can see something that others can't? It is funny I used to have an eye contact problem. Maybe the brain fog just makes it too hard to focus on the non-verbal aspects of communication.
Nantzie
I've been wondering about that no eye contact thing a little more. I wonder if there's any connection to that same behavior in autism (which I know may have some connection with celiac and other food problems)? Like maybe people with celiac and people with autism have a problem with the same area of the brain. I know they say that with autism they can become overstimulated and withdraw. I wonder if it's the same process?
Papa_Hen
Joe & the rest,

I'm brand new here and writing for the first time.

Brain fog, Chronic Fatigue, forgetful,
"Tired, cranky, irritable, and miserable...and sometimes I enjoy it". smile.gif
In retrospect, my worst days were Pancake Saturdays with the kids...Imagine that!

...did I mention forgetful?

Over the past 10+ years, I have done well losing weight on low-carb diets, and even better at gaining it back when I sought to go back to a "normal" diet. I am one of the souls that can lose up to 6lb of water weight the 1st day. Silly, me, I didn't believe enough in what I was doing, and allowed myself a little of a friends B-day cake...Several years later, and I was back & beyond my previous high weight.

Now down 45 lb from 260 since quitting bread/cakes/etc. in November. Recently read "Dangerous Grains" and came to learn it's gluten sensitivity, and that barley, rye, and others also have gluten. Since then, much more gluten free. The weight just comes off without even thinking about it. No struggle!

I also now know that I'm only one donut away from going back.
(Thank God it wasn't alcohol that I was so addicted to--I would have been a real mess.)

Last time, I got down to 185. I'm more than 1/2 way there.

The weird thing is that I am now to the point where I prefer fruits & fresh veggies to a huge pile of mashed potatoes! Considering similar claims elsewhere at this site, I'm optimistic that I'm really on to something.

I'm also scared as I had a very rough 2+ weeks that I hope are now over as of this afternoon.
Was it just anxiety causing everything, including the stomach aches, or could it have been my body releasing many toxins that had accumulated over my lifetime?

Most on this board indicate that they get much better right away, so this does not seem to be the norm.

Has anyone else had to go through hell to get to heaven?

I look forward to hearing from you and being part of this group.

Thanks,

- Henry
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