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

First GI Doctor visit


Spencer88

Recommended Posts

Spencer88 Apprentice

    Hi all! Back in August of 2016 I started experiencing some crazy symptoms mostly started with fatigue and worked its way up to anxiety attacks along with moments in which I felt like my blood pressure was super low. I ended up going to my primary care doctor and he ran several tests. My white cell count was elevated, my liver numbers were 63 and 150ish (elevated liver enzymes). He also had tests run for Celiac and a Hepatitis Panel. Hep panel came back 100% negative however I tested positive for Celiac. I received these results on October the 4th. My primary care doctor refured me to a GI doctor. That visit is on November the 9th. 

I was wondering if anyone could give me some good questions I should be asking or if I should ask about more specific testing with my GI doctor? I know they will be looking at my liver for sure. Has anyone else experienced elevated liver enzymes due to Celiac? Can that damage be reverted easily to get those numbers back to normal? 

Thank you for the support! 


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Hopefully your doctor told you NOT to go gluten free until after you saw the GI doctor. You do need to be actively eating gluten if the GI wants to do an endoscopy.

As to the liver enzymes many celiacs have these elevated before diagnosis. They will likely go down without any treatment after you have been gluten free for a bit. Try not to worry too much about it. As to the question of having a drink or two on your birthday it shouldn't do any harm but do ask your GI about it when you see the doctor.

 

ironictruth Proficient

TTG can come back positive with other diseases, including liver disease. Not to scare you, it is probably celiac. I have read it happens to a lot of celiacs. Do you know what tests were run?

They will do a biopsy. Maybe an abdominal ultrasound as well. 

My BP dropped as well randomly. I caught it by buying a monitor and checking. I would get episodes of feeling horrendous and my heartrate would be like, 50. BP 80/40's. Then it would spike and return to normal. Not super low, but low for an anxious person. My doc's office said it was anxiety attacks (not likely with a heartrate of 50). Sugar commonly drops in folks not absorbing as well. I would immediately eat during these episodes. We are still trying to figure it all out. 

Any problems with gallbladder or common bile ducts? Abdominal pain?

I hope you get a good GI! Keep us posted!

Spencer88 Apprentice

Hi all! Thanks again for responding in on this topic. 

Sorry for the delay, been trying to find time to update this. 

I visited my GI doctor who I think is great! she was very thorough and let me ask a lot of questions. Of course she asked me many questions. I answered all of them to the best of my ability. She did mention how she wanted to do a biopsy but that it would be up to me if I really wanted to follow through with that. She said that the only benefit of doing a biopsy is just knowing 100% whether or not I have celiac. She did mention that she wasn't 100% positive herself that I have celiac. She wants to run a series of other tests to see how my liver is doing. 

I did receive a ultrasound of my entire abdominal cavity back and front. That came back all good from the radiologist. 

My GI wants to run these tests: 

-Alpha-1-Antitrypsin blood

-Ana Blood Screen W/Reflex Titer 

-Ceruloplasmin 

-Iron + TIBC Panel 

-Metanephrines Urine Fractionated 

-Vitamin D 1,25 Dihydroxy 

-Vitamin D 25-Hydroxy 

In order to do one of these tests I have to be admitted into the hospital into the IV Therapy department. One of the tests takes about an hour and requires that I have zero distractions in the room, no cell phone, no tv. Is all this normal protocol? Is my GI trying to rule out other possibilities? Did anyone else have these types of test run? 

Thank you guys! 

Spencer

  

  

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 Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    2. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    3. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    4. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    5. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • 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.