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

Ok, Need Some Advice


GlutenFreeAl

Recommended Posts

GlutenFreeAl Contributor

Ok. Here's the condensed version of my story. Had stomach problems for years, namely pain and bloating and what felt an awful lot like menstrual cramps, only they happened throughout the month. Also prone to constipation. In the absence of other obvious problems, I had a doctor recommend to me about 2 years ago that maybe I had a problem with wheat. Blood test for Celiac was negative but I was so miserable I decided to go gluten free anyway. Initially I did have some improvement on the diet, and followed it for about a year. I eventually gave up because I was still having digestive problems and hey, the blood test was negative. Everyone in my life rejoiced when I gave up the diet, because it's obviously a burden for anyone who cooks for me/lives with me/goes out to eat with me.

Fast forward another year. I am having incredible problems again with bloating and cramping and pains. I land in the ER because of the pain, go through a battery of tests and procedures. I am eventually diagnosed with Endometriosis, which was removed with a laser. Post-surgery, I am in more pain than ever, despite the fact that the Endo is supposedly gone and I am on continuous birth control pills to help prevent it from coming back. The daily bloating is unbelievable (taking my morning flat belly to 3-4 months pregnant by 3:00). The pains in my lower abdomen/pelvic area literally take my breath away.

I am at my wits end and don't know what else to do. Several days ago I decided to give up every single trace of gluten in my diet (not a big wheat eater these days, but eating oats and things). Of course, everyone thinks I'm crazy and even my normally super-supportive husband thinks I'm grasping at straws and should just continue eating normally.

The weird thing is, I actually feel better. My thought is that the first time I was gluten-free, I was still eating occasional dairy and a lot of gluten free packaged products. These days my diet is a lot cleaner, with mostly fruits, veggies, fish and chicken, and some whole gluten-free grains such as rice.

I suppose it could be the "placebo effect," but my theory is that while I probably do not have Celiac Disease, could gluten be contributing to or even causing my other problems with inflammation in my gut?? If everything is sensitive down there from the Endo, could gluten be making the inflammation/swelling/bloating worse?

Any thoughts?


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



Celiac.com Sponsor (A8-M):



HAK1031 Enthusiast

First of all, the blood test has a crazy high number of false negatives, with me, my brother, and several of my friends on that list.

Secondly, many believe there is a link between endo and celiac. I have both, as do quite a few others on here...there was a thread a while ago. My endo symptoms are definitely better off gluten, and my celiac symptoms (when I was on gluten) definitely got worse around that time of month. Gluten is one of the things they say to avoid on a diet to help endo anyway.

If the gluten-free diet helps you, go for it. Who cares why? And I highly doubt it's placebo...your symptoms sound like mine, and I can't imagine those disappearing without a real cause. Good luck!

gfpaperdoll Rookie

you probably have gluten intolerance, not a good thing to have as you can see. I suggest testing thru Enterolab.com for your husbands peace of mind... If he has health issues, I would also test him!!!

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 Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • 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.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.