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

Help! Related Or Any Ideas?


Salax

Recommended Posts

Salax Contributor

Hi All- I am not sure where to start but I feel like many of you might be like me or had similar experiences. I have been gluten free since Feb 2009 and I was feeling fantastic! I started to experience pain in the gall bladder area in May 2009 and it was finally removed in July 2009 (working at 13%), so digestive wise I feel great! However, I feel like I have gone downhill in other ways. I have it seems a constant infection raging through my body pretty much every month, I am on antibiotics almost every month. I feel like the doctors are missing something. I am tired all the time, feel generally sick (not cold or flu sick, weakness type sick), headaches (every afternoon/evening), loss of appetite, random low grade fevers, pain (sometimes, no always or long term) in the gut area, nausea, and weight loss (not huge, but noticeable). During these times my white blood cell count has always been high and also in my urine. Which generally leads the doctors to think urinary tract infections, however; I have had them before an NEVER experienced those symptoms. I can tell the difference, between having one and not having one.

I am stumped to figure out what is going on in my body and I am SURE something is off. I don


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

Taking a stab at this: sounds like a candida or fungal overgrowth issue. I had those symptoms. I took one round of antibiotics for strep throat and then went down hill. Nausea, weight loss, fatigue, it was terrible. My GI did an upper endoscopy to diagnose it. Then I went on Diflucam for 2 months. There are several drugs to treat it, and I would recommend massive doses of probiotics along with the drugs, if it happens that you have a fungal issue.

Mine was bad because I threw up alot. One time, I aspirated (where you choke a little bit and it goes down your windpipe). Then the fungus ended up in my lungs and I got pneumonia and a cavetary lesion ( a big giant ball of goop) in my lung and was in ICU in isolation for 5 days. Then outpatient IV antibiotics for 30 days. Not something to mess with :blink:

GFinDC Veteran

Hi Salax,

I went gluten-free a couple years ago and felt much better. But over time I found I still wasn't feeling right. I continued to have GI issues and other symptoms and kind of figured that's just the way it is for people with celiac. Eventually I cut all soy from my diet and started improving. It took weeks but I got a lot better. I had been thinking soy was not like gluten in having to be totally eliminated. But it made a huge difference for me getting off it completely.

So, just saying, that I think soy stinks and if yuze uh eatin it ya shouldn't otter bee.

Course there are other foods that can cause problems too. I'd start by eliminating soy though cause it has such bad effects on the intestines.

Soy bashing over for the moment. :blink:

mommida Enthusiast

Salax,

Please keep me informed, as my 7 year-old daughter is having very similar symptoms.

She was diagnosed with Eosinophilic Esophagitis and we apparently eliminated her fodd trigger(s). Her last scope in December show no signs of Celiac damage or eosinophils.

We are waiting on her blood tests. Ultra-sensitive TSH free T4 lytes, BUN, ?, calcium, glucose, Vit B12.

So from those tests I can gather the doctor is testing for Hashimoto's, and Secondary Addison's Disease (unfortunately there are a lot of symptoms there), kidney function, and bsically these are very baseline tests to try and get a direction what to look for.

Salax Contributor

Thanks all for your responses. I realize it's tough with something like this and I appreciate the feedback. :D

Today I had another flare up of extreme pain in the gut area-generally around the belly button both to the right and left. With horrible back pain, cold sweats, severe nausea. At the time I was driving (or trying too) it was the worst. Lasted 15 minutes and now the pain (its been 12 hours since the flare up) has dulled and nausea remains.

I called the doctors office, they sent me for an emergency CT scan. We are currently looking at acute pancreatitis. Strange, because I don't drink at all and I have no gall bladder, so my thought is either medications causing it or re-occuring infections? I don't know at this point.

The doctor is calling me tomorrow. I will keep you posted. :blink:

Salax Contributor

Ok scratch that, I have a 3CM mass in my liver... :o

Ugh...MRI here I come.

kareng Grand Master

Ok scratch that, I have a 3CM mass in my liver... :o

Ugh...MRI here I come.

Good luck. Let us know how your doing.


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



Celiac.com Sponsor (A8-M):



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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.