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

I Hope I'm Doing The Right Thing!

VitaminDGirl

Recommended Posts

VitaminDGirl Apprentice
VitaminDGirl
Posted

Hi. I was here several weeks ago.

I'd had an off the charts saliva test saying I'm highly intolerant (dr. said 'allergic') to gluten.

Soooo...I decided I just had to know if I'm celiac or not.

Went to GI dr.

He ordered bloodwork, unsure of validity of saliva testing.

All bloodwork negative, including bloodwork of the same test I took by saliva.

He even called the lab that does the saliva, who told him a false positive could happen if one has parasites.

Did a poo test.

Sent it to the lab.

Parasite free.

Decide to do the biopsy, though GI dr. highly doubts celiac.

It was scheduled for yesterday.

I was sick and canceled.

I have had pain in my feet and legs and back that suddenly onset (first in feet) a year ago. The only tests of allll my xrays, nearly full body MRIs, every kind of bloodwork you can imagine....

They only could find 'for certain': Vitamin D deficiency, which I'm now recovered from.

and now this saliva test.

I'm tired of the pain. I don't feel I can wait any longer to do the test.

Tonight I decided I'm gluten-free.

My 7 year old has awful constipation and ezcema. She is adopted. (saying this b/c we are not blood related to think of a link between us for intolerance or celiac).

Her bloodwork was negative.

Thinking of taking her off without a biopsy.

Thanks for listening and for your support.

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

Celiac.com Sponsor (A8-M):


Kay DH Apprentice
Kay DH
Posted

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Frances03 Enthusiast
Frances03
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Kay--thanks a million for this post. How encouraging to hear. I'm so glad to hear that in spite of all the testing, you took the plunge and are noticing such positive results. I appreciate you taking the time to share your story with me. I'm sure I'll see you around the site.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Hello, fellow homeschooling Mama! I am homeschooling 4 of my own. congrats on being preggo with #4!

I very much appreciate your comments and will be taking them into prayerful consideration.

Thank you for sharing your struggle and story as well.

Hope to see you around here.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Skylark Collaborator
Skylark
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Depends on how sick gluten makes you. I self-diagnosed have no problems at all turning down gluten or explaining myself, as I'm sick for a couple days after eating traces of it. I just tell people I'm celiac. You say what you need to stay away from poison! Nobody has my medical records but me and my doctor, so how would they know otherwise? Besides, doctors say I probably am celiac and I've had three different doctors tell me that there is no sense breaking a strict gluten-free diet that's maintaining my health for a challenge with a series of somewhat unreliable tests.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Just keep in mind that false negatives on the biopsy are not uncommon. Do try the diet strictly after the biopsy is done. Your body does know the answer.

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
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    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.