Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Intermittant Flu Like Aches With Celiac?


hollyd

Recommended Posts

hollyd Apprentice

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

I can get flu like symptoms when I accidently eat gluten. At first, I will have a hard time distinguishing a gluten reaction from the flu. My other gluten symptoms soon rule out the flu though ;)

sneako Rookie

"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).

StrongerToday Enthusiast

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!

jerseyangel Proficient

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.

lizzy Apprentice

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

hollyd Apprentice

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sneako Rookie
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!!!

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

  • 5 years later...
HappyFace Newbie

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748

    CravingADonut
    Newest Member
    CravingADonut
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.