• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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

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

Rate this topic

2 posts in this topic

Recommended Posts

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.

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.

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
      108,114
    • Total Posts
      939,747
  • Member Statistics

    • Total Members
      66,100
    • Most Online
      3,093

    Newest Member
    Hebasamir
    Joined
  • Popular Now

  • Topics

  • Posts

    • That doctor is delaying unnecessarily! If he's been sick for 2 months already, another 3 months is cruel and unusual.
    • IT could be many things, I find I have a gastric dumping issue with some meals, I know some food intolerance I have will trigger it. I know If I do not start my day with a big glass of hot liquid and magnesium and have it before a meal, that meal will sit it my stomach till it makes me sick and vomit it up 4-6 hours later. I know for me meats do not digest. they just sit in my stomach til I vomit them back up. Animal fats and certain oils do not digest same thing. just float in my stomach til I puke them up when they start going rancid in my stomach 4-6 hours later. I find digestive enzymes are a MUST. I take 2-4 times the suggested dosing, and even extra bromine with heavy protein meals.

      There is another issue where some people have weak stomach acid there for the stomach does not digest food nor dump it. If you have this issue then betaine hcl will help this. For me it was not my acid but a enzyme issue.
    • I am sorry that your daughter (and you) are experiencing this.  After diagnosis, celiacs need adequate follow-up care.  When was the last time her antibodies were checked?  Have they come down?  Are they still very elevated?  This link verifies what I said: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ By testing you can help rule out active celiac disease.  It can take most celiacs a year or years to recover from celiac disease and all the collateral damage that can come with it.   Then you might consider a dietician who is knowledgeable about celiac disease.  Often going gluten free is not enough.  People tend to just find substitutes for their already unhealthy food choices.  She should focus on fresh fruits, veggies, meat, nuts, dairy, legumes, rice, etc.  and avoid processed foods until she has really mastered the diet.  The learning curve is so steep!  Read our Newbie 101 thread found at the top of our Coping section.  It contains helpful tips.   Autoimmune thyroid is very common with celiac disease.  Be sure to have her thyroid checked and antibodies tested for the thyroid as well even if other thyroid lab markers are okay.   Besides the lack of periods, have her other symptoms improved?   I wish you both well!  As a Mom myself, I get the worry!  We want our kids to be safe and healthy!    I am glad you are championing her health!   Oh, did the rest of the family get tested even if symptom free?        
    • This might seem daunting but you will heal, you will be able to eat some foods again soon, but first you have to let go of some extras to speed up healing or your going to develop a few more issues your going to regret. Drop the processed crap, take your time cook whole foods from scratch. No sauces condiments, etc. Drop oats, do not deny it you know you feel edgy when you eat them, While your at it drop all grains, sugars, and carbs. Look up paleo diet, for now you can enjoy meat but if you keep on eating carbs you will loose the ability to eat meat period. You will also develop a corn allergy if your not careful, either the gluten CC or other complications best to limit corn intake and start working on removing it from your diet. Enjoy your grandmothers tamales once a month, learn to make them from her. You have or will develop something called ulcerative colitis, perhaps the paleo diet will prevent this or if you already have it it will save it from getting as bad as I know it did. PS Nunataurals pure powdered stevia, and eyrithrol will be your best friends but got easy on them too much will lead to gastric distress early on. And if you crave deserts like I know you will use nutvia coconut flour mixed with eggs for a base, use ground flax, and chia for thickening also. a little goes a long way and you have to let it set up a bit this will become a base for a lot of your food. Look at investing in a stone mill nut butter grinder, almond butter will be your best friend. To offset cost and make a road map out of life, develop grain free baked good and sugar free options. Artisan Almond Butters, etc. and sell them at farmers markets. You are meant to be a guiding light and to help others with this disease. Do your research look up Celiac.com, Get your own cook area, set up a small dedicated table with dedicated cookware else where, either your room or the bathroom. Let your mother have her kitchen and make your own this will ease family tensions. Invite her to learn how to cook in your area and stay safe. Practice with her and perfect your gluten free dishes early on for a successful chef job later on. You will need a small tabletop convection oven, rice cooker/crockpot/pressure cooker, microwave, nordicware cook ware, mixing bowels, spatula, freezer paper for work surfaces, etc. ALL NEW, DO NOT try to clean you old stuff IT WILL NOT WORK (trust me I tried it) Get a new blender and hand blender also took weeks to figure that one out.

      Supplement wise go look up lucky vitamin.com will save you tons of money. your probably feeling constipated still right? Get Natural Vitality Magnesium Calm and ease in to the dosing at 1/4tsp and ramp it up over the next few weeks, do not be discouraged if it gets really bad at first. Also look up Liquid Health, Stress & Energy and Neurological support they will be your life savers. Give up smoking now look up CBD oil, you will find it works much better for stress and anxiety attacks.

      If you have digestion issues look up enzymes from Jarrow, do not fear take 2-3times the does if you need them.
    • His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.
  • Upcoming Events