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hollyd

Intermittant Flu Like Aches With Celiac?

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I'm on a waiting list for my endoscopy so don't know yet, but am going nuts with fatigue, stomach problems including diarrhea and a wierd flu type thing that comes and goes. I feel achy in my legs and arms like with the flu but it never manifests with respiratory symptoms. I take echinacea to try to ward it off but in a few weeks or so it comes back. It definitely feels like an illness, not muscle or joint pain. Is this common to anyone else with celiac?

I've recently seen a celiac specialist despite negative blood work a year ago. My symptoms are getting worse, I didn't have any gastrointestinal symptoms at that time. He agrees my symptoms scream celiac and says that bloodwork isn't always reliable. My ferritin is very low without supplementation with iron and with supplementation, it just hovers at the lowest level and my zinc has been low too, even with supplementation.

I was just wondering if this strange flu thing is related.

Thanks!

Holly

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"FLU-Like Symptoms" is the way I explained my problems to my doctor, and the reason he decided to test me for Celiac. Pre-gluten-free I would have the Flu Like symptoms every time I would go to the bathroom, rarely otherwise, but it would last 10 minutes prior and 10 minutes post bathroom stops. But now that I am gluten-free and if I become "Glutened" the symptoms are far far worse (unless its nerves kicking in as well, or if I was so used to it pre-PF). Today for instance I really noticed it after getting glutened. I had hot flashes all evening and my stomach felt like it was going to explode. I really couldnt focus on anything and was sweating constantly, and I was dizzy and just generally disoriented. Then I started to feel as if I had a fever, right now I feel like I am high on marijuana but not the good high. The high that you get if you are high too long (for me at least).

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I *always* felt like I was coming down with the flu! Now that I look back, I remember many missed days of work or social events because I was sure I was getting sick. I'd go to bed early, and wake up the next day better. Now I know better - my "a -ha" moment as Oprah would say!

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I often felt flu-like symptoms and aches that would always include nausea. I would get these "illnesses" for years--Drs. felt they were sinus infections. I would try and stay "healthy". This went on for years--until my symptoms escalated about 2 years ago. It came to a point where my hands would hurt and it was hard to lift my arms.

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hi i get these symptoms too and i know its because i got into gluten the other day and am suffering for it and i have brain fog too which isnt pleasant as i feel like am going to have a seizure episode and i dont want to go out incase i do . liz

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Wow, very, very interesting. Thanks so much to all who responded. I thought it was a wild shot that it was related but now I see otherwise. Sometimes just having it make some sense is a relief. I'm starting to feel so miserable so much of the time that I hope it's celiac just so I can finally feel better. I'll deal with the diet.

Thank you!

Holly

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I'm starting to feel so miserable so much of the time that I hope it's celiac just so I can finally feel better. I'll deal with the diet.

I have the same philosopsy, I only tested positive on one of my 2 blood tests for Sprue , and have not done a biopsy yet, but I hope that it really is celiac, then I can have a name for something that has been haunting me for sooooooooo many years! My doctors always treated the symptops, "oh hes bipolar" "bipolar schizophrenia" "chronic depression" "ADD" "ADHD" "Sleep Apnea" "Over weight". And now they are finally looking a tthe cause. Makes me soooo happy :D

PS: GO BRONCOS!!!

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Guest SusieQ

Hi!

I was dx. with fibromyalgia about 10 years ago. That is a sleep and pain disorder. Five years ago I asked for a test for gluten intolerance and my lady doc. lost her cool and yelled at me since she believed I was asking for unnecessary expensive testing. Made me cry actually.

Recently, I decided to pursue this again, with a different doc. My Anti-Gliadin turned out positive, just barely. Other blood test were negative. I've asked for a biopsy and it looks like I'm going to get it. Even if negative, I'm going gluten free.

My pain and stiffness seems to be a little better after being gluten free for a week. My brain fog is better and i feel happier. When I went to Japan during December I had a terrible flare. I realized that most of their foods have soy sauce or oyster sauce which both have gluten in them. I hurt so bad I could hardly move. I decided then that I just had to check on the gluten connection.

I love this web site. Wish I'd found it a long time ago. Fibro symptoms frequently seem like continual flu like symptoms.

I guess I will need to go back to eating gluten for a while before the biopsy. Can anyone give me any guidelines on this?

SusieQ

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hollyd -

Have you considered using EnteroLab (www.enterolab.com)? My brother received neg bloodwork and endoscopy for Celiac last year, but was referred to EnteroLab and they confirmed his gluten intolerance a few months ago. I have suffered with all kinds of GI and GYN symptoms for more than ten years, and after his diagnosis, I had testing done through the lab also (although, I had never had the bloodwork or endoscopy done before). My results showed immune response to gluten (gluten intolerance) and some malabsorption/intestinal damage. I have since also ordered genetic testing to see if I carry the Celiac gene. It is way less invasive then the endo, and the lab report provides lots of information. Just something you may want to consider.

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