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Painful Glands - So Over It
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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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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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