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

"leisions"


MelindaLee

Recommended Posts

MelindaLee Contributor

My sister finally went to be tested for celiac. I was dx in August, and I encouraged her to be tested as well. She has long avoided breads as she would get stomach pains and bloating. So, she went for the blood test and biopsy. The doctor has been less than helpful. He states she has "leisions" in her stomach and intestines. She called back 3 times (he won't see her) and finally he stated "I cannot scientifically tell you you have celiac". She doesn't have the option of another doctor due to her insurance situation. She has noted, despite this, a positive results from the gluten-free diet, and has had issues if she attempts to reintroduce gluten into her diet. She is staying gluten-free at this point, but we are concerned if the leision could indicate something else as well or if it could be part of this disease. Any ideas?


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

Maybe this article will help:

Open Original Shared Link

Seems like Celiac to me...

Takala Enthusiast

Only in my brain !

What she can do is go to the doctor's office. Be really nice. Tell the medical office people that according to law, they have to give her copies of all the test results. And they need to do this before she leaves the office. If they balk, she tells them she already contacted the insurance company and they don't like it when doctors run tests and then don't give out the results. Smile. How long will it take to make copies ? Smile.

If they ask why, tell them they need to do this before you are forced to contact the State's Attorney General's office. Smile. Because your new doc needs a copy. For his/her files.

Yes, you own your test results. You paid for it, thru your premiums. So they need to turn them loose.

I can't tell you anything, but at least then somebody else might be able to have a look - see at this. I could say, hmm, first degree relative, and having symptoms, gets relief if avoids the gluten, and now some sort of lesions, sounds like it's getting more and more likely, but I'm not a pro, just playing the really annoyed consumer on the internet with some experience at this.

ravenwoodglass Mentor

She should do as Takla suggested and I would report this to the insurance company as he should not be refusing to go over her test results with her.

kareng Grand Master

Actually, from the office staff side, this is what I would suggest.

Call and tell them you need to get copies. If they ask why, say your other doctor wants you to bring them with you or your moving out of town and don't have one yet. You can come by and get them tomorrow if that works. Most doctors offices will just give them to you. Be specific about what you need a copy of. Sometimes stuff isn't always filed in your paper chart. Give dates and say blood tests, op/ procedure report, pathology report.

If they want to send them to another doctor, do you have a GYN or other doc to send them to? Anyway, they will give you copies but they might charge you for them. You could have them sent to Dr. Ann Smith in another town. Assuming Ann is your aunt or sis with a different last name than you. Unlikely they will check if there really is such a doc.

You probably won't have to go to all this trouble if it's just a doctors office. Hospitals are stricter.

eatmeat4good Enthusiast

Takala?

Will you please go to the Dr. with me? :)

George Knighton Apprentice

Ugh, this is what I hate about the state of our healthcare (in the United States at least). All they want is money.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Ugh, this is what I hate about the state of our healthcare (in the United States at least). All they want is money.

Yea sometimes it seems that way although there are a few good ones out there. They just seem to be hard to find.

I think one of my biggest annoyances is the ones who make a point to do stuff like 'doctors or dentists' without borders but if you ask if they take Medicaid they say no. How about they help the folks where they live first? I did a project for college contacting doctors to find if they take Medicaid patients and found few who would.

twe0708 Community Regular

My sister finally went to be tested for celiac. I was dx in August, and I encouraged her to be tested as well. She has long avoided breads as she would get stomach pains and bloating. So, she went for the blood test and biopsy. The doctor has been less than helpful. He states she has "leisions" in her stomach and intestines. She called back 3 times (he won't see her) and finally he stated "I cannot scientifically tell you you have celiac". She doesn't have the option of another doctor due to her insurance situation. She has noted, despite this, a positive results from the gluten-free diet, and has had issues if she attempts to reintroduce gluten into her diet. She is staying gluten-free at this point, but we are concerned if the leision could indicate something else as well or if it could be part of this disease. Any ideas?

I had a ct scan done and was told I have a lesion or cyst on my liver. I have been almost gluten-free for over a year but still have occasional stomach pains. I had a MRI done today and ultra sound too, so I will not have my results back until the middle of next week. My lipase blood work is high and my ANA (I think that's what it's called) is high, so we are trying to figure out what's going on.

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
      132,152
    • 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
      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.