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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Painful Glands - So Over It

5 posts in this topic

My name is Danielle. I am 24 and live in New York City - and I can't eat gluten and I love to eat - Starting to see the problem?

I'm not certified by a doctor but it all started in January  - I went from normal human adult to someone I didn't recognize. I had a major sinus infection. It lasted for weeks - now I'm use to having a stuffy nose as I suffer from hay fever from birth - but nothing like this, It was scary. I had major stomach pains and even went to ER because I was nauseated and couldn't keep anything down - along with major constipation. I was sent home with a slap on the wrist and pills - it did nothing. My cold did go away along with the stomach problems - but it got worse before better - for about two months I dealt with on again off again sinus pressure ( It felt like an elephant was on head - everyday!) twitching muscles - nerve pain - joint pain -a popping jaw - wrist and feet pain (it felt like needles!) - a clogged ear a painful throat - a swollen tongue - painful swollen lymph nodes - always tired -headaches everyday and gum pain. Seriously if you put this into Web MD it would say your dead. I thought that I was falling apart. At times I even cried because I thought that this was my life and it would be a tumor or cancer. I got anxious and depressed. It turned into hypochondria. The youthful girl who loved to eat and laugh was no more and it happened in a mere few months. I was in constant pain and was prepared to live my life like this.


Until one day I was reading Fitness Magazine and it had an article about being tired. I read through it and just like it was written for me. It was an article on Gluten Intolerance. Now I heard of it, as I had a friend from work who could not eat it either - but I didn't believe it. I was 24, why now would my stomach decide to not accept carbs anymore. But just as my thigh twitching right now I knew something was wrong with me. Followed by rashes and the doctor telling me I was anemic I had developed a food allergy against my bread and butter(literately!).


All symptoms are pretty much gone except these glands mostly behind my ears and my neck hurt on and off everyday but they are not swollen. Is this withdrawal? Its been a full week with absolutely no cheating and im still in pain - should I be patient?


Any advice is loved and welcomed 


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I wish you would have gotten tested before going gluten free to see is you have Celiac disease. If it's only been a week, you could start eating a little gluten each day and get tested. Then you would know if you have an actual disease or not.


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I wish you would have gotten tested before going gluten free to see is you have Celiac disease. If it's only been a week, you could start eating a little gluten each day and get tested. Then you would know if you have an actual disease or not.

Im in the process of that as I am seeing an allergist but when I eat it I feel worse - I ate a hot dog bun last week and had to take a nap and woke up to ringing in my ears. I work at Starbucks and when I eat anything out the pasty case its hell - once my tongue even ached after I ate banana bread so something is bothering me - but thanks for the reply 


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Celiac disease isn't an allergy but an allergist could certainly order the tests. But for the tests to be accurate, you need to be eating gluten.


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Gluten withdrawal has nothing to do with allergies or intolerances and would happen to anyone who quit consuming gluten. You could expect to be really tired, lethargic, have a headache and cravings, sleep more than normal and have brain fog. That is because gluten is an opiod, fitting into the same sensors in your brain as opiates, and having similar withdrawal symptoms. This would be one of the reasons people "love" bread products - because it literally gives them a high. Withdrawal normally takes a week or two but is mainly bad the first couple days.

Swollen glands is not a symptom of withdrawal from gluten, but could be part of a reaction to gluten ... or a reaction to other invaders such as catching a virus. If you do have a gluten intolerance and this was part of your autoimmune response, yes, it could take longer than just one week in order to get over the autoimmune reactions like that.

But you appear to be really early in the process of figuring things out. If you are feeling that much better by not consuming gluten, I'd say stick with it, but also do a lot more research into celiac and wheat allergies, what the differences are, and seriously consider doing a gluten challenge in the future so that you can get the correct tests done.


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    • I highly recommend being tested for celiac disease before you go off gluten, if you haven't already done so.
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      I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
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    • https://okinawahai.com/tips-for-eating-gluten-free-in-okinawa/ Hope this helps!
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