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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

Celiac Disease - Post Diagnosis, Recovery/Treatment(s)
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    • 6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. Always have to have hot fluids or this happens also.....no more cold drinks lol.

      EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

      Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

      Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.
    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
    • So, it's been 6 months gluten free, grain free, dairy free... Pretty much everything free, and progress has been pretty minimal. I will say that I definitely feel better than I did when I started, but I'm still nearly completely non-functional. I still feel like I'm not in reality, still can't focus, still pretty dizzy, panic attacks, exhausted, crippling lethargy, muscle twitches, you name it. As I've said before, I've got all my bases covered on CC, have my own pans, etc. Sometimes I do feel like I'm getting better, but then for little to no reason, such as mis-timing a meal, or waking up or going to bed an hour early or late, my body throws a tantrum and everything comes flooding back. The past couple weeks I've been trying a low carb, high fat "keto" diet, which seemed to be working after some of the induction stuff passed, but the other day I had to get up early, and since then I've been disoriented, derealized, and exhausted. It's impossible for me, or anyone, to be as consistent as my idiot body demands. I've had my vitamin/mineral levels checked, and thyroid checked, all coming back normal. I had an endoscopy done at the beginning of September, and the biopsy came back negative for celiac. All they found was some irritation in my stomach and slapped GERD on me. That said, the same thing happened to my aunt, who is celiac. I don't know how she eventually found out, but if it means doing a gluten challenge, I don't need an official diagnosis from some whitecoat moron. I'm out. I also don't know how many samples they took in my small intestine. From what I can gather, they only took one in there. Unsurprising, as I had a bad reaction to the anesthetic AND the oxygen, and when I called him asking about it he basically told me I was a crazy person. Another awful doctor experience. Anyway, ranting aside, I feel like I've tried nearly everything at this point. The only other thing I can think of to try is to select a red crystal and kneel down by a specific wall and wait for a magical tornado to come take me to the next chapter in my life. Who else here saw little progress in 6 months, and what the hell did you eventually do to fix things? I'm open to any and all suggestions besides 50 caliber aspirin, which is an option, but I'd rather not go that route.
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