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Member Since 09 Feb 2011
Offline Last Active Jun 01 2011 10:54 AM

#704704 Observations We Can All Relate To...

Posted by on 01 June 2011 - 10:54 AM

OMG, the brain processing! That part is just awful, isn't it? My daughter and I both get this, and you should see when we've both eaten the same food and got glutened - we look like two confused drunks having an argument about two different topics at the same time, LOL.

The scary one for me was driving somewhere and suddenly I wouldn't know what street I was on, or where I was supposed to be going, and couldn't remember who was in the car with me until I checked. That started happening a few months before I was diagnosed and scared the crap out of me! I was thinking early senility or alzheimers or something, I swear to god.

Changing my diet was a MUCH better diagnosis than that, thankfully!


OMG...You made me laugh. Love the part about two confused drunks.... I so get what you mean. For some reason, whenever I ate pizza I'd get really bad gluten brain fog. It was always worse with pizza for some reason. I remember once I was driving home from work, I was supposed to meet someone at an intersection to drop off paperwork and I just whizzed by. I was having enough trouble getting home, much less remembering an errand I had just promised to run five minutes before on the phone.

When it got really bad for me, though, was a day I was sitting on the couch and I literally was so brain fogged that I could barely think. I was beyond functioning normally at that point, and I couldn't see my way through the next moment. It was as bad at that moment as it had ever been--and still not knowing why was terrifying. At one point in my life, I sort of got used to the idea that I would die young and would do so never knowing why. What a horrible thing to have to think. This is the point some of us get to in this disease--before diagnosis--and it's truly, truly sad.

I often wonder how many people are out there going crazy at this very minute and not even knowing why. And that something as simple as throwing away a loaf of bread might save them.

As great as it is to have the brain fog behind me, I do feel so sad for all the people in the world who are experiencing it right now and have no idea why....
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#704667 Observations We Can All Relate To...

Posted by on 01 June 2011 - 09:12 AM

Don't give up on sandwiches. Try UDI's bread

I do have UDI's bread..but I don't know. There's something un-bready about it. I hate to sound like a whiner, but think back to those peanut butter and jelly sandwiches with that soft white bread that tasted almost like cotton candy...like Sunbeam bread. That's the only time that I miss wheat the most. Or a hotdog bun---a seriously good hotdog bun. I realize now that some things just aren't as good without the bread----that the bread was a big part of why it tasted the way it did.

And yes, I know what you mean about the brain fog. I remember one day last winter I was so brain fogged I really gave rise to the thought that I was losing my mind. It was horrible. I'd give up peanut butter and jelly not to feel that way again!
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#689740 Celiac And Now Ms

Posted by on 04 April 2011 - 07:23 PM

I hope I'm not too late in replying.

I was diagnosed with MS ten years ago. It's such a long and complex story..but I was pretty sick for many years and had all the symptoms of MS. I was actually on one of the very expensive medications they use to treat MS. I was a big advocate for MS, all the while feeling as though that wasn't the entire story.

What you need to do is go right to Amazon and order the Swank book on MS. Swank was neurologist who believed gluten intolerance had a lot to do with MS. It's called "The Swank Diet" and some people with MS have really healed following his guidelines to a T.

I think I've come to realize that I am really probably just a celiac that never knew, as I can trace these problems to childhood. The MS type symptoms started when I was in my late 20's, but I'm wondering if it was just this wheat thing getting worse.

The first few weeks that I gave up wheat and grains I really felt like a new person, so I urge you continue on this path---no matter what your final diagnosis.

Good luck. Keep in touch...
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#677807 Brain Fog And Seeming Dementia....

Posted by on 23 February 2011 - 01:26 PM

I'm so glad you wrote because I have had many of the same symptoms--especially the headache.

I'd get the pain on the sides of my head--near the top at scalp level--and when I touched those spots they were sore! I had those headaches daily for a while--once for a whole week. They're better now, but after being gluten free for three weeks, I occassionally get them. And sometimes, very quickly after eating gluten by mistake.

I can also relate to the fuzzy brain thing----mine was so bad over the years, it's a wonder I'm not dead! Especially combined with fatigue---I'd have some very bad days. My memory is still fuzzy, but the brain fog---the kind that was so bad you'd wonder why the whole room wasn't foggy too--has improved, although not completely resolved.

Remember too, that you are eating differently now, and I notice I am probably not eating perfectly well, which can also cause foggy thinking. Give yourself time to adjust. I know how scary it can be, so remember this is a process. It will take time to figure it all out, to get on the right path, and figure out what else may need to be done down the road or eliminated.

I'm here for you if you have any more questions!
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#677799 Night Sweats?

Posted by on 23 February 2011 - 01:09 PM

I've had night sweats for ten years!

I thought I must have had the earliest and longest menopause in history!

I've been (trying to be) gluten free for almost three weeks, and come to think of it, I haven't had any night sweats since then.

Gosh, everyday, I connect one more dot!

I am sleeping better, too. I used to wake up once or twice during the night and couldn't get back to sleep...
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#675715 So Far.......so....weird?

Posted by on 16 February 2011 - 02:12 AM

Thank you all so much for these amazing replies. I am just flabergasted by how much everyone has gone through in their lives.

It's so wonderful to be potentially on the road to healing!

I look forward to being a part of this community....and to feeling better once again...
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#674615 So Far.......so....weird?

Posted by on 11 February 2011 - 08:22 PM

I was once diagnosed with Multiple Sclerosis and for years believed I had MS. I have B-12 deficiency, too, and must do monthly injections. I have asmthma. And acid reflux. I have been to every doctor and had every test. I've had aches and pains, blood sugar issues, brain fog, irritability, bloating, fatigue and insomnia for so long that I don't know what life is like without it.

It only occcured to me a few weeks ago that this could ALL be wheat related when I realized on a few separate occassions that sandwich bread and pizza made me brain fogged, sick and gassy.

So, as an experiment, I gave up wheat for a few days. And my whole life changed. Over night. Maybe instantly. No more brain fog. No more gas. No more bloating. More energy. Reduced acid reflux. I'm breathing better. I'm not feeling crazy and moody! The list goes on.

I was on the Montel Williams show once for a piece I wrote on MS! I was very active in the MS community. But I started to realize after several years that it must be something else...my issues didn't seem to follow an MS-like pattern.

Why did not ONE doctor in the last twenty years mention wheat sensitivity? And with all the research I've done, why didn't it occur to me? I literally had no idea this might be a problem, and yet everything I look up in regards to wheat sensitivity, I see my own symptoms time after time.

I haven't felt well my whole life! And now, at the age of 48, I am suddenly getting it?

I plan to continue to be gluten-free for two months..and by then, I am sure I will be able to self-diagnose to some degree. I am not sure that I want to be gluten-challenged because even after a week without gluten, I know I never want to feel the way I used to!

But, right now I am feeling mad.

If I could only recount the hours I spent, the money I spent, the time and effort and tears and difficulty...and the whole time....it was an allergy, maybe?

I have lost years here.

Days when I couldn't think straight and then the next day I'd be better.

Weeks lost. Months lost. Years lost, when I add them up.

If this indeed is what is wrong with me.... I vow to spend the rest of my life educating doctors!

For now, I can't tell you how nice it is to look down at my stomach and not look four months pregnant!

Lighter on my feet today.

Lighter in my life.
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