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Member Since 17 May 2007
Offline Last Active Nov 21 2007 10:49 PM

Topics I've Started

7 Weeks Free, Ups And Downs.

17 May 2007 - 09:09 PM

I've been gluten/dairy free since late March, and during that time I've had 2 setbacks. First a short medical history and how I went gluten free, then the problems.

I caught dengue in the tropics in Aug 05, took a month to recover and was left with a persistent pain in my upper right abdomen that refused to go away.

New Years Eve '05, I first felt a strange sensation in my chest, and within a week I had full blown mono, which I would finally discover when tested for it in March. The mono lasted into late May, early June.

July 06 - Sept 06 I'm somewhat healthy and start freelance web design/development. By early October I've had a distinct shift in personality, I've quit working, walked out on a client without delivering, avoid email and anything that will stress me out. By the end of the month I've developed gluten ataxia, and having difficulty breathing, mental fog, vision problems, anxiety, nervousness, night terrors, irrational fear, etc...

November was spent visiting doctors to no avail, until mid December when I decided to quit drinking so much soda/caffeine.

The majority of the symptoms went away within a day, but all came rushing back on Christmas Eve during some stressful conversations.

January through March 07 were less eventful than the past few months and most of the psychological symptoms had gone, the ataxia was now the major issue. During this time I began watching House MD from the start of season one, and finally ran across the episode featuring gluten sensitivity with neuropathology. While not identical to my symptoms, it put me on the right track in researching it, and I made the decision to try gluten free for 2 weeks to see what would happen.

To my surprise, within a day I was feeling much better, the shaking had ceased completely, and my diarrhea went away to be replaced by a normal stool 3 days later.

I stuck to the diet, and went to see a GI doc the next week, which is when I had my first setback. He claimed that celiac/gluten sensitivity was very rare, and a European problem. He was certain I had giardia or some other parasite, and I figure I should at least give him the benefit of the doubt. At this point I was still unaware of gluten ataxia and the direct neurological and psychological effects.

Around April 6th, I went into anaphylaxis after taking the antiparisitic. For treatment in the ER, they gave me adrenaline, which set off my gluten ataxia symptoms of uncontrolled muscle movement. Also, for the next three weeks I would continually develop a rash and also had a week of bad nasal allergies. I think my histamines just got wound up, but all that settled by the end of April.

Throughout this, I stuck to the gluten free diet, but the histamines acting up caused me to feel stuffy, and run down, so progress was hard to determine.

In late April, I did a self administered gluten challenge (since I have no luck with doctors), and was symptomatic 2 days later, with symptoms lasting 5 days after onset. All the symptoms came back with a vengeance, and this is my conclusive diagnosis. Once I start work and can afford it, I will definitely do an EnteroLab test to get an official confirmation.

Fast forward to this week, I'm feeling pretty good, taking all my vitamins, probitiocs, L-Glutamine, etc... But this morning, I got super stressed out/upset over a matter, went back to bed, woke up at 1pm (I'm sleeping 12-13 hours a night), was feeling off, and then around 4 I started having symptoms, shaking, anxiety, inability to focus, etc... Pretty much everything.

I know for a fact I didn't have any gluten exposure, so my questions are thus:

Can stress trigger gluten-like symptoms during recovery? I'm assuming yes, since the anti-antibodies are still circulating about, and any stress while i was undiagnosed led to more severe symptoms.

Are ups and downs during recovery to be expected? Some days I'm full of energy, but if I try to use that energy, I'm wasted for the next 3 days. On other days I feel a bit unwell for no specific reason.

When can I realistically think about working? I'm hoping to be freelancing again, but it's a highly mental and somewhat stressful job, so is late June pushing it? Should I give my body longer to heal if I don't want to crash and burn?

Is sleeping 12 hours a night common? I tired getting on an 8 hour sleep schedule, but that was a disaster all the way around. I'm guessing my body needs the extra sleep to heal.

Tips or tricks to speed recovery? I'm open to suggestions.

Apologies for the long post, and thanks for any answers.

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