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

What Do You Think?

MamaMeagan

Recommended Posts

MamaMeagan Apprentice
MamaMeagan
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

Your blood tests were positive. The cure for either Celiac or Gluten intolerance is a life long gluten free diet. And sorry to say, your doctor is wrong. You have to be 100% gluten free, with either diagnosis. Once in a while cheating is not an option- at least not if you want to heal.

MamaMeagan Apprentice
MamaMeagan
Posted
  • Author

Hmm they wrote on my lab work the blood test, questionable for celiac not for diagnosis??

katifer Apprentice
katifer
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

I am just going to add that the reason i went to be tested was because my child was having chronic lose stool and was struggling to gain weight/and grow. Both of our tests came back negative.(unfortunately i was put on an elimination diet while breastfeeding and gluten had been out of my system for a while) He was diagnosed failure to thrive(born a 9lb)...under the 2nd %...took gluten out of his diet and has been great since...he and i both have the gene and his endoscopy was fine but he had already been off gluten for too long they shouldn't have even done it. I will be honest it was a VERY hard decision to make without every test coming back positive but the doctors at Emory in Atlanta just said if he cannot tolerate it then it is not good for him. He is 3 now and my 5 year old and i all are gluten free. They are both doing so well--they are not catching ever sickness anymore(they rarely ever get sick), they do not know the difference when it comes to gluten free food and they know what they are allowed to have. We eat well and they are so much more healthy than before. My 3 year old is growing and doing well. The doctors believe that i have celiac because of all my symptoms,gene test and i am very,very small compared to the rest of my family...i stopped growing in 6th grade. Celiac and food intolerances..anything that makes your food rush through your body means you are not getting the proper nutrition and your body suffers. i hope you can find a support group to help if you decide to go fully gluten free-it has saved our family from sooo much pain. God Bless

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):


  • Who's Online (See full list)

  • 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.