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      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


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I know that television likes to make everyone think that OCD is hilarious. Everyone with it is some sort of neat freak who needs to lock and unlock their deadbolt 5429847528945 times (or some ridiculous number) before they go to bed. Since a lot of mental health issues are linked to celiac I thought I would share an article that is actually pretty spot on for what it is truly like to live with OCD. For fair warning, this article does have strong language.



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Everyone should read this.  Thanks for posting.

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Great Article.  Society is "in love" with being different.  People think that if they have this (any condition) then society will treat them special and give them more attention.  It takes away from the seriousness of the condition and the difficulty people who actually have the condition face in real life. 


This is my experience with real life OCD and may help people understand how the obsessive part fits in the psychiatric part.


I am one of the so called "clean freaks".  My home always looks like a showroom, laundry is always done, paperwork is filed as soon as it enters the door. You get the picture.  Now the Psychiatric part.  I spend enormous amounts of energy doing this because I expect tragedy to walk through my front door at any moment.  I must be prepared to deal with the crisis at hand.  Every time the phone rings I expect it to be "the call" about someone in an accident, someone has died, etc.   Keeping my home spotless and in order gives me a sense of control with my out of control thought process.  There is a name for what I do, it is catasrophizing.  When I drive down the road I imagine every possible accident that could potentially happen to me.  Every sound I hear seems to be someone breaking in my home.  Every smell is a potential gas leak or fire.  I intellectually know why I do the OCD stuff.  I also cannot stop doing it, just like I can't stop the thoughts in my head.  My Hubs and Son don't question why I must move the furniture around at 3:00 in the morning, they just help me if I ask.  They don't worry that I'm in the closets making sure that the clothes are sorted by color, by sleeve length, and that the hangers all match. They understand my struggle.  Someone who doesn't know me would probably call me crazy but in reality I am just coping the best way I know how.  Having OCD is not funny, not fashionable and certainly should not be made light of. 



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I'm actually a sort of messy person. I like to call it organized chaos. :D For me the two most difficult things have always been the thoughts and food. Even at a young age I would sooner go hungry than skip particular rituals relating to my meal and snacks. To this day I will not eat Reese's Pieces without a flat surface to sort them by color and number. I am incapable of eating a sandwich cut straight up the middle. People think that's crazy, that it's a personal choice and I'm being picky. I'm not picky, I literally can. Not. Do. It. I'm the same way with every phone call and driving. Every time I walk down the stairs will be the time I fall and end up with a compound fracture, or impale myself on something I'm carrying, or actually just kill myself by breaking my neck. Every time I make dinner will be the time I cut a finger to the bone, finally end up with a burn serious enough to end up in the ER, burn the house down or some other horrific thing. I also need things to be just so. While I'm capable of being spontaneous if I don't have plans, if I do actually have plans I mentally go to hell in a handbasket if those plans suddenly don't work out. This is amplified about a million times if blame can be pointed at an actual person.


Frankly though, the worst possible part of all of it is knowing that all of that is completely freaking crazy. There's that old saying that as long as you are still sane enough to wonder whether or not you're crazy, you're not. Except for us we know damn well we're doing and thinking things that are positively nuts. We actually get to be completely aware of how crazy we are, which is terribly frightening (at least for me).


I'll admit, I've been known to crack the old joke "I'm CDO, it's like OCD but the letters are in alphabetical order like they should be." I still think it's funny, maybe especially because I think things should have orders, classes and such like a scientific system. :lol: But the way society makes like of OCD is enough to drive me (and probably most of us) batty.

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My son is struggling with OCD. They believe it was brought on by a strep infection that he had when he was just 7 yrs old. It calmed down and he was able to function well until this summer when it returned with a vengeance. We're not sure what caused it to resurface again so severely. He's constantly tortured by intrusive thoughts and not able to attend school. We've had to begin medication therapy in conjunction with cognitive behavioral therapy. 

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    • Thank you all for your great suggestions! Will take all of it on board
    • Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others. On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
      Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving. Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.
    • Hi Kirsty, Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least.  It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved.  After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life.  In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms? Best of luck matt    
    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
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