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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?  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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greenchick22

2 Months In And Not Feeling Great

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I've been gluten free for 2 months now (blood work negative for celiac, but doctor thinks it could be intolerance).  I was hoping at this point I'd be feeling a lot better but I'm not.   Still exhausted, achy, skin problems.  I've had more stomach issues the past month than I have in many months previously.  I'm starting to wonder if either

 

-I'm not gluten intolerant after all and i should stop the diet...I keep losing weight and I'm way too skinny.  

 

or

 

-If cross contamination has been affecting me.  I guess because I don't have Celiacs I didn't worry too much about that, but maybe if I'm very sensitive I need to.  

 

Anyone else who is non-celiac gluten intolerant have to be very careful??

 

Thoughts?

 

Thank you!

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hi, i am also classed as gluten intolerant with negative results for celiac. I am now 13 months into being gluten free.

 

Before I realised i was gluten intolerant I was tired and dizzy and had no energy. I went from a size uk 12 to a uk 6 in 2 months. My pulse rate was high and couldn't walk up the street without being breathless. I was classed as depressed and my memory was terrible. Within 2 weeks of stopping the gluten the dizzy foggy feeling was gone, my pulse rate was down and i was less breathless. But then then the stomach problems started with a vengeance! Almost like my body was saying "don't you dare go near that stuff again - I am trying to heal!"

 

I had not had major tummy problems before i went gluten free but suddenly the slightest contamination sent me crashing. Bloating within minutes of eating it and tummy cramps and the big D later. Followed by 3 days of crankiness, bloating everytime i ate and tiredness until it left my system. I couldn't even eat gluten free food at family get togethers or restaurants! The problem being that gluten is really sticky and was on all the plates, knives and forks etc. I was super-sensitive and my body was having none of it! 

 

This caused a few awkward moments where I felt like i was putting people out because i was only gluten intolerant and not celiac! I felt like i was doing something bad to my husband and kids if i made them go gluten free with me. I felt like i was inflicting some weird fad diet on them! But i wanted to get better and i still felt so tired. Somewhere amongst it all i decided to stop worrying about at and go for it properly. To stop worrying that i was putting people out and to treat myself like i was celiac.

 

I got up one morning and went to my supermarket and bought the cheapest range of pans, cutlery, plates, washbowl, dishcloths etc i could find. I chucked everything that had gluten in it in the bin and scrubbed my kitchen clean (i pretty much cried right through the cleaning! I was so weak it felt so hard at the time!) I changed my toothbrush, shampoo and hairspray. I didn't eat out or have takeaways and even took my own coffee cup to my friends houses! I also bought whole lot of vitamins to try and build my strength back up.

 

I found my strength to do this from this site. A big THANK YOU to all those who have posted your comments on here! It was 120% the best decision I ever made. My home is gluten free now and 13 months on i do not know myself. No depression, tiredness, dizziness, breathlessness, bloating etc. My husband and kids do not feel like they are doing without their treats - instead my kids hug me and say 'I am so pleased i have my mummy back' Apparently i am worth more than a biscuit haha  :)

 

DO NOT GIVE UP YOUR GLUTEN FREE DIET - It will get better. Treat yourself as celiac and you will get better. My personal belief is that gluten intolerance is celiac and the docs don't know everything. I have met celiacs that display no symptoms at all and yet i felt like I had only months to live! Even if you are not sure - a year gluten free will not harm anyone. Its a healthy diet and you may change your whole life for the better.

 

I can now eat at restaurants with only minor amounts of bloating and have a coffee at friends houses. But after a year of being super careful i think if i have the choice i will always opt for my own food etc if i can. Its just not worth going back to those dark days.

 

As a last thought. I realised i had a secondary intolerance about 6 months into the gluten free diet. It was lactose. I know the thought of cutting anything else out right now is hard but hopefully you will consider it. To be honest lactose was fairly easy in comparison. And i can now eat it again in small amounts because i was so careful with the gluten free diet.

 

Good luck and don't give up - life will get better  :D

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I forgot to say that i also doubled my daily calorie intake at first. I stopped worrying about eating low fat wholewheat and just ate and ate and ate. It did take 8 months before i gained any weight so my body clearly needed the calories. It sounds terribly unhealthy but cheese and bacon omlete was my choice - quick and easy. I also ate lots of nuts and dried fruit. 

 

Basically, stuck to easy and naturally gluten free foods until i put the weight back on. I am now a size uk 10.

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greenchick - have you read the newbie 101 thread?  lots of good advice and you are pretty new to all this.  2 months is not very long and i did so much better myself when i embraced the whole lifestyle and it's all about not getting any gluten at all.  period.  if you are getting cc'd anywhere, it will put your body back when it comes to healing.  i was underweight, (almost starved to death, really, my doctor was getting ready to check me into the hospital and put me on i.v.) and while things were touch and go for awhile, and i was sick through withdrawal - once my body got to healing i started putting on healthy weight.  eat what agrees with you for now.  skip the dairy for awhile.  and for mercy's sake, cut yourself some slack.  take a nap, take care of you.  we all started somewhere.  i had no cheeks, i looked like a skeleton - now when i smile, i can see my face cheeks :) and i know my butt cheeks are back, cause the husband has taken to smacking them when i walk by.  hang in there!  welcome to the board - it's a good place for you right now.  out of all of us, somebody is going/has gone through exactly what you are right now.  and, lisa78 thank you for some great advice - looks like you might have spent a little time lurking :)  you have a good handle on this thing!  (((((hugs))))) to everybody :)

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