• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Behavior Is The Biggest Manifestation Of My Disease: Anxiety, Trichotillomania, Collecting/hoarding
0

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 is...shoes, 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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,370
    • Total Posts
      935,724
  • Member Statistics

    • Total Members
      65,047
    • Most Online
      3,093

    Newest Member
    pidnit
    Joined
  • Popular Now

  • Topics

  • Posts

    • I have been dealing with pain for thirty some years.  I have been diagnosed with RA (sed rate high) due to joint inflammation and nodules, OA due to xray, mri results, fibromyalgia at one point because they didn't want to tell me it was all in my head and, I have nodules on my thyroid.  Other than my sed rate being high, my blood work comes back "normal" so, other than the Methotrexate for RA, I am on no meds for pain.  I take Ibuprofen when needed.  I do not take "pain meds" because I have a low tolerance to medication and I just cant function even if I take 800mg of Ibuprofen.  Example . .. I get a cold and take children's cold medicine.  I take 1/2 the dose of a six year old and it knocks me out.  Some days the pain is so bad, I can barely walk.  My husband bought me a hot tub a few years back for my birthday and it is my go to on bad days.   I was tested for Celiac's and came back okay.  The only other blood work that comes back out of whack are MCHC, low . . . MCH, low . . . RDW, high, . . . ESR, anywhere from 20 to 85 but normally around 40ish . . . TSH, 2.0 or below.  But, the doctors say the first three are not so far out of range that we should worry about it, the ESR just means there is inflammation and the TSH is within normal range.  I have recently gone gluten, dairy, and sugar free in an effort to combat symptoms, pain and weight.  I have noticed a difference in the inflammation and in my general overall wellbeing.  I seem to be more attentive, have more energy, and not is no much pain.  My questions are:  Does anyone else have similar issues while all blood work is coming back normal?  And, any suggestions on how to introduce items back into my diet to test for reactions?  Should I start with gluten or dairy?  The sugar I can live without.  Any info would be helpful.  I look things up on the internet but end up with a bunch of pop up ads for things that are going to cure me.  Thanks in advance.  
    • There is nothing you can really do about the high antibodies.  If it is any consolation, mine have been as high.    Your TSH is too high.  The acceptable range now is around 1 to 3.  You might benefit by increasing your thyroid replacement (or starting) if you are not taking it now.  I feel best when my TSH is closer to a 1.  
    • Do you have a dental school anywhere close?  Even a couple of hour drive might be worth looking into.  See if you can talk to one of the clinical supervisors/dentists.  This would be a case they would like. Or just show up to an Emergency room at a big hospital - if its serious, they can't turn you away.  Because that is what will happen eventually.   Edit - Call up Texas A & M school of dentistry and get your butt up to Dallas!
    • Simon Levelt Organic Coffee is certified gluten free . 
    • Figured I would update on this, up to 1000mg of amoxicillin (500mg twice a day) it does nothing anymore the infection is constant, white area above the tooth, pressure and issues breathing out my right nostril some days, pressure behind my right eye, and ringing in my right ear.  Checked around as suggested still only 2 places willing to work with me (do to the infection and nature of it most will not) they charge a good amount of money and the upfront fee on payment plans is outside my ability to pay. Xray show a large black area heading up into the jaw and apparently this is the issue that has caused most to shun working on it.... I no longer have medicaid due to paper work issues. Bakery business has gone really bad this past month. I am honestly not been able to even afford fresh veggies this month and been living on canned spinach for my veggies, and eating the same meals over and over (omelettes, shakes, nut based porridge).  I am honestly just trying to ignore it and live my life the best I can with the knowledge it is going to probably kill me in the next year and there is nothing I can do about it. Just hoping some philanthropist offers to cover my medical bills or say screw it and let it kill me. I will keep posting on other topics and avoiding this one while I can and hopefully keep contributing to the community with my knowledge base, suggestions, etc in the mean time.
  • Upcoming Events