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

Going To The Docs Today


ashnyaya

Recommended Posts

ashnyaya Newbie

I am a new member here. Before posting i have read alot of the post on these boards and they are extremely helpful. I was so frightened when my doctor said the words "celiacs disease". I was going to the doctor originally because i had bloody stools and stomach pain with bloating and constantly having bowel movements after everything i eat. So I had an endoscopy and colonoscopy. Colonoscopy was fine but the biopsies from the endoscopy showed possible celiacs disease. My doctor ordered me to have a capsule endoscopy ( the weirdest but really interesting). The results from that showed my villi were extremely damaged. So the doctor ordered me to have the blood test done. So, now to the point, I go to the doctor today to find out the results from my blood test. I have been doing alot of research on here so i think I have prepared myself a little, but I am still a little nervous. I am 27 and female and have a big, extremely italian family. This will be a lifestyle change for me. I guess I will have to start bringing my own food to family gatherings because i know they will look at me insane if I try to change family recipes.

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!


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



Celiac.com Sponsor (A8-M):



Metoo Enthusiast

I am a new member here. Before posting i have read alot of the post on these boards and they are extremely helpful. I was so frightened when my doctor said the words "celiacs disease". I was going to the doctor originally because i had bloody stools and stomach pain with bloating and constantly having bowel movements after everything i eat. So I had an endoscopy and colonoscopy. Colonoscopy was fine but the biopsies from the endoscopy showed possible celiacs disease. My doctor ordered me to have a capsule endoscopy ( the weirdest but really interesting). The results from that showed my villi were extremely damaged. So the doctor ordered me to have the blood test done. So, now to the point, I go to the doctor today to find out the results from my blood test. I have been doing alot of research on here so i think I have prepared myself a little, but I am still a little nervous. I am 27 and female and have a big, extremely italian family. This will be a lifestyle change for me. I guess I will have to start bringing my own food to family gatherings because i know they will look at me insane if I try to change family recipes.

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!

Welcome!

Well, keep in mind the blood tests have a 30% false negative rate, so as my doctor said, if you have 100 celiacs in a room, it will only identify 70 of them...the other 30 would have a negative blood test for celiac, even though they have it! So no matter what your blood test, you should go probably try gluten free.

BabsV Enthusiast

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!

Welcomes! You've come to the right place for support, information, recipes, pep talks, a chance to vent when you need to, etc.

Check out this stellar post, on the "Coping With" forum...wish I'd seen this right after my diagnosis. It would have made life soooooo much easier/better.

ashnyaya Newbie

Thanks for the kind words. My results from the blood test came back positive. So i am finally officially diagnosed. The doctor was no help though he just gave me pamplets and said be on a glueten free diet and see ya in a year lol! Thank goodness this forum is so helpful.

mushroom Proficient

Welcome to the club no one wants to join. I hope we can make your time here pleasant and informative.

You do have a lot of reading to do, though. On here you will find help about deglutenizing your kitchen and cookware, who not to kiss and when :D , how to deal with family and friends, and a zillion and one things that may pop up. Feel free to pose questions whenever you can't find an answer, and vent away -- we have been down the path and we will sympathize. :) Starting with, the doctor's reaction was totally normal. Most of them know little about nutrition so there's not much point in their pretending they do.

MitziG Enthusiast

Yes, welcome! Hope your new lifestyle will have you feeling better soon! If your family loves to cook, they can be a great asset in helping you make gluten free substitues for the pasta and bread they traditionally serve. Expect a lot of duds in the beginning though- gluten-free cooking definitely has a learning curve! You don't have to give up the foods you love- but you will lose a lot of convenience, and that takes some getting used to!

ashnyaya Newbie

I need some advice on degluetenizing my kitchen. Any advice is helpful!


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



Celiac.com Sponsor (A8-M):



ashnyaya Newbie

Welcome to the club no one wants to join. I hope we can make your time here pleasant and informative.

You do have a lot of reading to do, though. On here you will find help about deglutenizing your kitchen and cookware, who not to kiss and when :D , how to deal with family and friends, and a zillion and one things that may pop up. Feel free to pose questions whenever you can't find an answer, and vent away -- we have been down the path and we will sympathize. :) Starting with, the doctor's reaction was totally normal. Most of them know little about nutrition so there's not much point in their pretending they do.

Wait, I can get glueten from kissing someone? That is so weird. I definately need to do some research!

Bubba's Mom Enthusiast

I need some advice on degluetenizing my kitchen. Any advice is helpful!

It seems like we get more sensitive to gluten once we're off it for a while, so take the time now to go through your spices and seasonings, condiments in the fridge, etc. Get rid of anything with gluten. Then wash down anywhere you've had gluten stored or used.

I didn't have the energy to wash down shelves and cabinets when first Dxed.

I just did it and got a real strong gluten reaction.

Be sure to check any medications or supplements, change your toothbrush, clean or replace your can opener.

Check out IH's gluten 101 list. There's tons of helpful hints there.

Good luck to you..and best wishes for good health. :D

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
      132,156
    • Most Online (within 30 mins)
      7,748

    Shrub
    Newest Member
    Shrub
    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.