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

Now Does This Make Any Sense?

danikali

Recommended Posts

danikali Enthusiast
danikali
Posted

Okay, don't get me wrong, I am happy that I haven't been feeling like complete crap these past few days, but it's really weird. I've been eating A LOT of gluten lately, and I only have little symptoms that come and go, and the big ones are not as bad anymore.

I was off gluten (well low gluten) for a few months, and then, I would feel amazing but then get completely HORRIBLY SICK out of nowhere!!!!! (Bad body aches, bad migrane, bad back aches, bad leg cramps, etc.) So anyway, for the past few weeks I decided to go on a COMPLETE gluten diet (for upcoming blood tests), gluten with every single meal! And even though I still have alternating constipation and diarreaha, and slight head aches, and slight leg cramps, and black and blue marks all over my legs, my back pains have mysteriously gone away!

So is it possible that my body has started to build up a "tolerance" to all of this? I mean, when I was on the low gluten diet, I would be fine for weeks and the BAM!!!!!!!!! Out of nowhere, my body would be stuggling to do ANYTHING!

Anyway, if anyone knows what may be going on.......... I don't know if this is possible, or if my body is playing tricks on me, or if I am miraculously on a road back to health....? It's like, I CAN EAT GLUTEN, I CAN'T EAT GLUTEN, YES I CAN, NO I CAN'T..............I really seem crazy! ;)

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

Celiac.com Sponsor (A8-M):


Katydid Apprentice
Katydid
Posted

<_<I had to reply to your post because I know exactly what you mean. My husband is the celiac in our family and he was diagnosed about 15 years ago, after having symptoms get progressively worse over about a 12 year period.

In the beginning, the first thing that bothered him was beer and pizza (a double whammy) But then a month later he would have a beer and pizza and get along fine.

To me, logic says it should bother you all the time, not just once in a while.

As my husband's undiagnozed celiac continued, he would cycle. When he first consulted a doctor about his symptoms, he would say "It just seems like I get the flu about every 6 weeks" Then as time progressed, it was every 4 weeks, then every 2 weeks, and finally - sick all the time. It wasn't until he was sick all the time that he finally got in his doctor's face and said "Look, there is something wrong with me, either find it or send me to someone who can". Thus the beginning of tests which finally led to celiac disease diagnosis after 12 years of suffering.

That is why this disease was so insideous for him. He would eat pancakes one day and get sick, and then eat them another day and be fine.

I don't know if this cycling was commonplace with other celiacs, but it certainly was for him.

Kay

Okay, don't get me wrong, I am happy that I haven't been feeling like complete crap these past few days, but it's really weird. I've been eating A LOT of gluten lately, and I only have little symptoms that come and go, and the big ones are not as bad anymore.

I was off gluten (well low gluten) for a few months, and then, I would feel amazing but then get completely HORRIBLY SICK out of nowhere!!!!! (Bad body aches, bad migrane, bad back aches, bad leg cramps, etc.) So anyway, for the past few weeks I decided to go on a COMPLETE gluten diet (for upcoming blood tests), gluten with every single meal! And even though I still have alternating constipation and diarreaha, and slight head aches, and slight leg cramps, and black and blue marks all over my legs, my back pains have mysteriously gone away!

So is it possible that my body has started to build up a "tolerance" to all of this? I mean, when I was on the low gluten diet, I would be fine for weeks and the BAM!!!!!!!!!  Out of nowhere, my body would be stuggling to do ANYTHING!

Anyway, if anyone knows what may be going on.......... I don't know if this is possible, or if my body is playing tricks on me, or if I am miraculously on a road back to health....? It's like, I CAN EAT GLUTEN, I CAN'T EAT GLUTEN, YES I CAN, NO I CAN'T..............I really seem crazy! ;)

<{POST_SNAPBACK}>

danikali Enthusiast
danikali
Posted
  • Author

Thank you so much! YES, that is exactly how I feel! Like I get the flu every 6 weeks or so! I mean, there are always little things, but it completely plays tricks on me!

The only thing is I'm wondering if the doctors will only be able to get a positive diagnosis by getting to the point of being sick all of the time! I'm going for my blood tests on Wednesday, (actually the doctor doesn't even know why I'm going there yet, it's a new GI), and I'm going to tell her I want the full Celiac Panel done.

But it's good to know that I still am on the right track, even if it seems like it's not always there. So thank you very much!

-Danielle

Rachel--24 Collaborator
Rachel--24
Posted

Your symptoms probably wouldnt be exactly the same everytime you eat gluten. Also sometimes reactions may occur quickly and other times reactions may show up a day or two later. Thats what happens with me anyways.

I never noticed any kind of pattern with my illness when I was eating gluten everyday. Somedays I could eat things and not be affected and another day I could eat the same thing and have immediate symptoms and end up in tears. It took me 2 years to even figure out my symptoms were food related and that was only because a dentist told me so. I tried messing around with my diet and couldnt figure anything out. I was losing lots of weight and decided to not mess around with my diet and let the doctors figure things out. I had no idea about gluten. I was eating tons of gluten trying to regain my weight but I only lost more and about 3 months later I was unable to get out of bed and had depression so bad I was suicidal...I felt about 90 yrs. old and I still had no idea about gluten. I think if symptoms were always obvious it wouldn't be such a hard disease to diagnose. Eventually it will take a toll on your body even if you're not feeling symptoms everytime you eat gluten.

danikali Enthusiast
danikali
Posted
  • Author

Thanks! This is really good to know because this past Saturday, I had tons of energy all of a sudden, and no pains at all, yet I ate gluten all day long! Sunday came and I got really bad leg cramps, but now today, I am fine again! A little tired, lost the energy from Sat. but I don't feel sick at all!

Anyway, I'm glad to know this. My finace was like, hey, maybe you can eat anything you want!!!!! And I was like, hmmm......maybe I can??

Archived

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

Go to topic listing

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

      Headaches / Migraines and Hypoglycaemia

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

      Headaches / Migraines and Hypoglycaemia

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

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

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


  • Member Statistics

    • Total Members
      132,157
    • Most Online (within 30 mins)
      7,748
    Christina Deloyola
    Newest Member
    Christina Deloyola
    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
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      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
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      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
      Body dysmorphia experience

      By Scott Adams · Posted

      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.