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

Frustrated Beyond Words....

Bobbijo6681

Recommended Posts

Bobbijo6681 Apprentice
Bobbijo6681
Posted

I have been on the Gluten Free diet since the end of January this year, and feel much much better in so many ways. However the reason I saw the GI, which lead to diagnosis, is that I have pain in my RLQ. The severity varies from day to day and time to time. My dr is trying his hardest to find a cause for this pain but so far has not been able to pin point the issue. Last week I had a CT Scan done that showed nothing significant, but since then the pain has gotten progressivly worse. On Monday I couldn't handle it anymore and called the Dr office and was told by his nurse that he was in the hospital for the day, but he took my chart with him. He suggested I go to the ER and when they called for a GI consult he would be down. Well....the stupid ER dr wouldn't listen to me and insisted that it wasn't a GI issue so she would not call him. I proceded to tell her everything that he had done so far, and what he was watching. To make a long story short (too late I think) I explained to her that my LFT's have been elevated so the dr was watching them. She told me that they looked Ok on the bloodwork they had done. She printed out the lab results and when I got home I looked them up...although they are in the "normal" range they are in the upper part of the scale. I go in for an xray of my small bowel tomorrow, which is the only part of the digestive track they say they haven't been able to look at yet.

Has anyone else had problems with elevated LFT's after going Gluten Free? Is there a reason this may happen? If this test doesn't show anything, I am so confused as to what to do next. The only way I have survived this week is because of all of the pain meds they have given me, but I can't take those forever, not to mention I have to work and it is difficult to do that when I am loopy because of the meds.

Any advice that someone has would be greatly appreciated, otherwise THANKS for listening!!!

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Have they checked your gall bladder? That seems like something the GI would have tested already. I have read that gall stones can cause pain that area.

Open Original Shared Link

allisons Newbie
allisons
Posted

Undiagnosed pain is incredibly difficult - the urgency is way beyond the ability for medicine to handle it. But a good diagnosis is worth waiting for. An ER doctor is for keeping you alive (or managing emergent pain) , a Primary Care Physician is for keeping a healthy person healthy - you need to be under the care of a specialist if you actually have a problem and hopefully your PCP pushes you towards the right specialist.

I say hold off until you can get a referral from a doctor who knows to a doctor who can really help you.

Wolicki Enthusiast
Wolicki
Posted

There are many here who have had elevated liver enzymes and it is associated with celiac. I agree with GFinDC, have your gallbladder checked. Usually an ultrasound and/or a test whose name I cannot recall because my brain is mush today where you swallow barium and they take xrays. Someone help me with the name? :ph34r:

Everyone in my family, on both sides, has had their gallbladder removed. Mine started giving me trouble at the age of 14, but didn't get it actually dx'd until I was 21. My sister had pain for years and years, and I kept telling her to have her gallbladder checked. Her docs weren't doing the right tests, until she had an attack while pregnant and had to have surgery when she was 3 months along. :blink:

keep yelling until someone checks to be sure it's not your gb. It is excruciating.

Roda Rising Star
Roda
Posted

There are many here who have had elevated liver enzymes and it is associated with celiac. I agree with GFinDC, have your gallbladder checked. Usually an ultrasound and/or a test whose name I cannot recall because my brain is mush today where you swallow barium and they take xrays. Someone help me with the name? :ph34r:

Tests for your gallbladder include a gallbladder ultrasound and if necessary a HIDA scan to test the function of the gallbladder. The other test Wolicki is talking about is an upper gi series or a small bowel follow through test. They can do them separatly or together, depending on what your doctor orders.

Bobbijo6681 Apprentice
Bobbijo6681
Posted
  • Author

Thanks for all of the replies!!

I had my gallbladder out in 2006, years before I was diagnosed Celiac. I did have the Small Bowel Follow Through done today...hoping the results of that come back quickly. I am in soooo much pain I just want to curl into a ball and cry.

Thanks for listening to me vent. I know some people have it way worse than I do, so I should try to find the positive...that is just really hard right now!

Roda Rising Star
Roda
Posted

Thanks for all of the replies!!

I had my gallbladder out in 2006, years before I was diagnosed Celiac. I did have the Small Bowel Follow Through done today...hoping the results of that come back quickly. I am in soooo much pain I just want to curl into a ball and cry.

Thanks for listening to me vent. I know some people have it way worse than I do, so I should try to find the positive...that is just really hard right now!

Make sure you drink lots of fluids for the next few days so you don't get constipated. Have they done a colonoscopy, or a CT scan? It sucks to be miserable and not know why. HUGS to you!

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

Celiac.com Sponsor (A8-M):


Bobbijo6681 Apprentice
Bobbijo6681
Posted
  • Author

Yes they told me to drink lots of fluids so I am trying to make sure that I do so. I have had both the colonoscopy done and the CT. Had an ultrasound done too. So far nothing is showing up....but the pain doesn't go away. Most of the time I just try to grin and bear it, but right now I am just having a pity party for myself. I HATE FEELING THIS WAY!!!

Thanks for your support!!

Roda Rising Star
Roda
Posted

Have they went back to make sure the ducts from the liver are open? Some people can have problems after having their gallbladder removed. Have you had an MRI body scan? Sometimes it can show things that the other modalities can't. Here is a link for you to look at.

Open Original Shared Link

Bobbijo6681 Apprentice
Bobbijo6681
Posted
  • Author

Thanks I read that and will definately ask about it if this test they did today doesn't give us any answers.

I am soooo glad that I found this site and so many wonderful people that are willing to help!!

Salax Contributor
Salax
Posted

In regards to a gall bladder, I had exactly the same issue, I have been gluten-free since feb 2009 and in late april the pains in the right side began. I knew it was my gall bladder, but when I went to the ER they did a HIDDA scan that showed everything was ok. The HIDDA scan is suppose to show stones or blockages. HOWEVER, if you do a HIDDA Scan with CCK contrast (that is the key) that actually shows you what the gall bladder is working at, for example mine was at 13%. Thus Pain and lots of it. Make sure you demand a HIDDA scan with CCK contrast to rule out all avenues of gall bladder issues.

I hope you feel better, I know what it's like to go through that type of pain. *hugs* :)

Wolicki Enthusiast
Wolicki
Posted

I've heard some people, my Granny included, who got stones in the bile duct where the GB used to be. Maybe the HIDA can find that? Back when mine was wonky, they didn't have that scan, just the upper GI (thanks Roda!)

Gosh I hope you feel better soon!

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 replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    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

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.