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

my premature freakout

ironictruth

By ironictruth
in Related Issues & Disorders

Recommended Posts

ironictruth Proficient
ironictruth
Posted

I just had an MRCP on Friday. It was to look at ducts in liver/pancreas. So, you know the tech cannot tell you anything but she asked me when my follow up was and I said January. She told me to call the doc Friday or by Monday. I then made a comment about taking pepto and xanax (docs ignored my symptoms a long time and a nurse I had in the hospital would joke with me that xanax and pepto was my cure) and she said "sounds like you are going to need a lot more then that". 

I am trying not to freak. But I have a lot of pain in the pancreas area along with the liver. Gallbladder was out in 1997 with an infected duct. Recent normal ultrasound and CT. Normal pancreatic and liver enzymes. 

I only had a weak DGP IGA 2x and a positive combined DGP 3x recently but when the tests were separated, they were negative. My biopsy showed duodenitis, no villi blunting. 

I thankfully have an upcoming appointment with a celiac specialist as well as a tumor scan my GI set up, this week. So, hoping to get some answers. I honestly thought I was in the clear with a CT scan and ultrasound. I had no clue how many things these tests can miss until they started adding on more. 

I am freaked out. I have had worsening symptoms for almost a year now. Inflamed thyroid, pain behind my eyes, arm, leg. Heart stuff. 

I am praying it is just a stone. They did an EUS in August and my common hepatic duct was 12mm, but it is not unusual to be enlarged after gallbladder surgery. 

I walk around in pain by my pancreas and liver almost all day now. But I think the small intestine hangs out there too. 

Oh, and I get a rash. Sometimes itchy hive like on the tummy (possibly after eating cheese), other times it looks like petichae and does not itch. Neither look like DH or a rash google pops up with for liver issues. Docs seem to dismiss the rash because they have nit seen it, only pics. 

Anyone have a MRCP? Stones? Maybe I have chronic pancreatitis? I do not recall ever getting the acute form except for horrible burning in that area while on gluten which had me pacing the floors and eating tums. I guess I came close in 97 per my doc at the time.

I know I should not be on here asking. Just looking for support and to get through the day!!!

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

Celiac.com Sponsor (A8-M):


ironictruth Proficient
ironictruth
Posted
  • Author

2016-11-13 07.38.43.webp

ironictruth Proficient
ironictruth
Posted
  • Author

2016-11-13 07.37.19-1.webp

RMJ Mentor
RMJ
Posted

How frustrating/scary!  Hope you get answers from the docs soon.

 

icelandgirl Proficient
icelandgirl
Posted

Hi there...I don't have any answers.  I do want to send you ((((hugs)))) and positive thoughts.   I do hope that all is ok for you.  Do the follow up call quickly, if nothing else to ease your mind.  I tend to worry a lot and it can be torture waiting.

Please let us know how it goes.  We are here for you.  ((((((hugs)))))

ironictruth Proficient
ironictruth
Posted
  • Author

Thanks all. Yup, 1:00 am and pain/nausea keeping me awake. Hoping it calms down so I can zzzzzz 

kareng Grand Master
kareng
Posted

What did the doc that ordered the test say when you called  on Friday?  As worried as you are, I can't imagine you would not have called and let yourself worry all weekend!  If it was very serious,  I am sure he called you Friday.

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

Celiac.com Sponsor (A8-M):


ironictruth Proficient
ironictruth
Posted
  • Author

They did not call Fri and he is not in today (nit sure if he was Fri either) so not sure he has even seen the results. I did leave a message with the nurse. 

What makes me nervous is that he did an endoscopy back in August. The pain I had worsened after and it took 3 weeks for the office to get back to me after calling several times! Finally they did and ordered a few blood tests and that was it. Pain kept worsening so they eventually ordered the MRI. 

I guess I will just have to go there and request my records  if I do not hear back by this afternoon. I promisEd myself and my boyfriend that I would not let it get to me the whole weekend and I tried really hard not to until it kept me awake in the middle of the night in pain.

ironictruth Proficient
ironictruth
Posted
  • Author

 well I guess really I still have no answers. So I have a neuroendocrine tumor study on Friday and a Celiac disease specialist the day before.  I'm sick of always being in pain and nauseous with my heart doing weird s***.

2016-11-14 16.43.06.webp

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. knitty kitty
      - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.