What Can I Expect...

[supermaltese]

Oh how I craved wheat. Gluten-free wheat, bread, pasta, rolls, pizza, tortilla IS DISGUSTING. I quit eating gluten December 5, 2014, but it wasn't until maybe 2 weeks ago that I stopped craving it.

 

I have diagnosed myself with Celiac's Disease. The process by which I arrived at my conclusion took 30 years. When I was very young, around 3 I began to get rashes behind my knees, inside my elbows, and on the back of my neck. At first, they seemed to only bother me when I was hot, or outside in the sun. I would scratch util I drew blood, and never get to the itch. It was like my bones itched and my skin was half-numb.

 

In my late teens I began having more itching all the way up and down my arms, on my chest about 1 or 2 inches below my neckline, all around my neck, on my face and forehead, my ears, and all over my head. Around 21 years old, these symptoms increased again and went from mild to severe, to mostly just severe. Around age 26, these symptoms increased again to periodic episodes of extreme bouts or fits. Like drowning, or being consumed in a fire, nothing else exists when one of these episodes comes on me. It's like a panic attack. I don't have enough hands to scratch every inch of my body Not that that would really help. Bathing irritates my skin, but so does not bathing. Every lotion (whether from the doctor, over the counter, hypoallergenic, organic, etc) brings on either a full blow episode or extreme itching in the area where I applied the lotion.

 

Without exception, every doctor I've ever been to (and there's been a lot) has never done or said anything helpful. The most common "reason" they give me for my skin "rash" is Atopic Dermatitis. They tell me, that sometimes the body develops an immune response and that I'm actually allergic to my skin and there's nothing they can do for me. They've given me Benadryl and other antihistamines, and water-based ointments with triamcinolone as the active ingredient (a steroid). The steroid helped a lot when I first started using it (age 21-25) but I couldn't use it for more than a day or two or it would have a negative effect. At various times throughout my life I've attempted to cut certain things from my diet, to see if my symptoms cleared up. Late last year I finally figured out that gluten was the problem and I've been gluten free since December 5, 2014. Since then my worst episode has only been mild to severe. I have not had another hell/drowning/ I'm-wish-I-were-dead episode.

 

Late last year I was able to determine that I would eat bread and then have an episode a few days later, or a few hours later. This was not always so. In the past, I've cut wheat from my diet for 30 days and still had hell episodes. As I've gotten older, the time between eating gluten and the time that I break down into having an anxiety attack + scratching episode has been decreasing. Now? If I eat a sandwich now, I'll be itching by the end of it, or not more than 1 or 2 hours later.

 

As the OP began with brain damage, my cognitive ability has declined a lot since high school (I'm 33 now). In high school I found it difficult to recall information I had read. Now, I find it difficult to recall something you told me 30 seconds ago. 20 years ago, I could type 65 words a minute with a 90% accuracy. Now, I can type 25 words a minute with a 70% accuracy. (Last year) My wife can be talking to me and I lose track of what she's saying halfway through the sentence. She'll tell me that she has a doctor appointment on a certain day and time, and an hour later I won't remember that she has a doctor appointment, or that she mentioned the doctor at all. (ALL SYMPTOMS HAVE IMPROVED A LITTLE SINCE DECEMBER 2014)

 

For the last 3 years, I've had another problem. I'd get up out of bed and fall down, or fall into the wall so I could hold myself up. I would take a few seconds to figure out where I was. I might be doing research on the internet (trying to) get up to go to the kitchen for a glass of water and wander around the house for 10 minutes because after a few steps I forgot what I was doing or where I was going. These VERY SCARY episodes have decrease in frequency.

 

Since I'm not eating gluten, I cannot be tested for Celiac's Disease, but that's okay because it's clear that I have it and not just a non-celiac's gluten intolerance. I'm not going to eat some gluten just so I can go to the doctor. Having done a lot of reading on the topic, I know there's really nothing any doctor can do for me. My best bet is to study nutrition and eat the best I can and try to heal.

 

I shake a lot, and it's not connected to my blood sugar levels. I've been tested for hypoglycemia and am borderline with lower than normal blood sugar levels. My hand-eye coordination is horrible. I'm having trouble spelling words and was nicknamed Mr. Webster in high school because I have always been able to spell even some of the most complex words.

 

:::MY QUESTION FOR THIS COMMUNITY::::

 

Have you gone for as long as I have with this disease but without a proper diagnosis? What can I expect as far as healing? Will my symptoms continue to improve, or is this the best I can hope for? Is there more I should change in my diet aside from just cutting out gluten? (I've also stopped eating other grains such as corn and all corn byproducts such as corn syrup and high fructose corn syrup)

 

Please discuss what I can expect? I've read that Celiac's Disease can kill, but I cannot find more than just generalized information about life expectancy? Do you know anyone who's died from, or because of complications due to celiac's disease?

[GF Lover]

The OP referred to in the above post is from this thread: https://www.celiac.com/forums/topic/111581-brain-damage/

 

Colleen

[cyclinglady]

Most of us have gone for years or decades without a proper diagnosis or even a clue that gluten was making us ill. There are over 300 symptoms of celiac disease and each present differently. I suggest you research the University of Chicago's celiac website. They are a leading researcher in the US.

Healing differs for everyone. It can depend on how well you adhere to the diet or what damage has been done. For example, I will never get my vertabrae fractures reversed and I will never regain that 1" in height! Nerve damge is the most difficult to heal or reverse. Just ask a diabetic!

Eliminating diary for a while can be helpful as well as indentiying any intolerances you may have.

I wish you well!

[knitty kitty]

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I found this article very interesting. I have symptoms similar to what you describe.

Fifty-one years undiagnosed. Fifty-two years old...still trying to sort it all out.