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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

What Tests Should I Get Next,i Feel Lost
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I'm wondering what tests I should ask my doctor for next( or beg him) since he thinks I have anxiety only .Right now my current symptoms are , a nervous feeling before a bowel movement(which I've had on/off) my whole life.It seems my stomack/ digestive tract goes into overdrive when I eat gluten.But only after a few days if being off the stuff.For example this Xmas and the week after I ate cake,donuts,cinammon roles, and my symptoms exploded.Sore stiff neck/ back/shoulders and jaw.Sinus flared up again,nervousness ,cold hands and feet,shivering.I stopped eating all gluten and soy (allergic to soy) on Monday.Slowly my muscle tension subsided,and now my stomach can take small meals ( gluten free of course ) and bigger meals like last night (steak and spinach) and it had that weird consequence.I woke up nervous and had to take a #2 which came out fine.Except I know by the way my stonach feels its going to be one of those overdrive days.This is what I called days where I need to be near a toilet because my digestion is in overdrive 4-6 times ill need to go.Not diearhea but small normal ones?!? It's been like this as long as I can remember, either I'm constipated or on overdrive since my early 20's.Only the muscle tension was new this year and sinus problems .Ive had food allergy testing including Gluten (not celiac), blood tests galore for thyroid,diabetes,red/white cells,urine tests.Mri of spine,X-rays spine,lungs,EKG,endoscopy (no biopsy),hpylor I tests .All neg I'm lost.Do celiacs get muscle tension and sinus inflammation? I also have hemmroids in 36 make

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Welcome LiquidCeliac!

Yes, all the symptoms you mention can be caused by Celiac Disease or Non-Celiac Gluten Intolerance. The best next step is to be tested for Celiac Disease. You NEED to be eating gluten for these antibody tests to have their best chance for accuracy. You mention going a few days without gluten - have you spent significant time gluten-free over the past year?

Here is a list of symptoms that can be associated with Celiac Disease:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

Many primary doctors will only run a tTG IgA (Tissue Transglutaminase IgA) to screen for Celiac Disease, but you should request a full celiac panel as these tests can not be done after removing gluten.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

CMP (Complete Metabolic Panel), All B Vits, D, K, Iron, Ferritin, Copper and Zinc

Good Luck to you -- Keep Looking for answers :)

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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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