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Behavior Is The Biggest Manifestation Of My Disease: Anxiety, Trichotillomania, Collecting/hoarding

2 posts in this topic

I just want to put this out here for other people who may be struggling with these issues: You are not alone.

I have been a hair-puller (trichotillomania) for all my adult life. I get intense itching and feel that the only relief I can find is to remove the hair at the source of itching. When I first went gluten-free, I noticed that the intensity of the itching and the urge to pull went away. Then I learned about DH. When I'm accidentally glutened, the bumps on my head come back, and the urge to scratch/itch/pull is uncontrollable. I don't get any relief, and by the time I'm done ravaging my hair, I've got a bald spot.

Glutening also makes me a demon-possessed acquirer of things. I will go on shopping binges. It doesn't matter what it, scarves, pens, whatever comes up as a need at the moment turns into a day-long mission to find as many of that thing as I can come up with. A couple days later, I look back, and I'm like "what was I thinking?" When I don't have gluten, I'm fine, and can easily use "executive decision making" to determine what is really needed and what is not.

My dad, who also had undiagnosed celiac disease, was the same way. When he died, and we cleaned out his drawers of things, we found collections of watches, pens, eraser refills, tie tacks...You name it...there wasn't just one, two, or three of things...but dozens. And we also heard that his brother did the same thing, but his penchant was for coffee. He had chest freezers full of coffee imported from Costa Rica.

My anxiety levels pre-diagnosis of gluten sensitivity were off the charts. I would stress at everything, My heart rate would accelerate to 180bpm for no apparent reason. I was diagnosed with dysautonomia, but Ativan would bring my heart rate down and my thinking more clear. I had an overwhelming sense of dread at everything.

Depression? Don't even get me started...No amount of Lexapro or Amitriptyline could lift me up....

Migraines were the worst. It was as if my brain was dying one quadrant at a time. The fact that low cerebellar volume has been associated with celiac disease is not surprising to me. I can actually feel my brain being killed when I'm glutened.

I would get dizzy, unable to walk a straight line.

Fibromyalgia? Intense. Everything hurt. All the time.

After being 6 months gluten-free, I am a new person. I can exercise again. I don't go in the the blank stare/anti-able-to-concentrate state. But even the slightest amount of cross-contamination sends me into hell. Bumps on my head, a feeling of worthlessness and hopelessness, I start packing things away like a squirrel saves nuts, I can't focus, and I get migraine more intensely than I have before.

I don't think there is enough research being done on the neurological impacts of gluten. I believe in my heart of hearts that the damage is just as severe, if not worse, than damage done to the gut in celiacs. I am convinced that so many of the behavioral problems we see in society today are gluten-related. ADHD, autism, insatiable appetite (hence obesity), OCD, chronic pain, Alzheimer's etc etc....

So if you are suffering, know that you are not alone. Stay away from gluten, eat lots of green leafy veg, fruits, and you will be fine.


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The Costa Rican coffee, I can understand. It is SOOOOO GOOOOOOOOD! :)

I have noticed with myself that when I get glutened I get REALLY grumpy. I don't think the grumps are because I don't feel good either. A lot of times I just get a minor psoriasis outbreak which isn't that bad. But oh, you don't want to be around me then. If I drop something on the floor, instead of "Oops" and picking it up, I am more likely to use some of those words that always help mechanics when they are working on a car, while I kick the item across the floor. When I'm behind the wheel I am likely to be screaming, "Get out of my WAY!" at the driver in front of me. And when the neighbor's dog is barking incessantly, rather than saying, "Knock it off" I am more likely to point my finger at it and say, "DIE!"

I can't stand being around MYSELF when I'm like that, but I am helpless to stop it.


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