Jump to content

  • 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):

Update

GlutenWrangler

By GlutenWrangler
in Coping with Celiac Disease

Recommended Posts

GlutenWrangler Contributor
GlutenWrangler
Posted

Hello Everyone,

I saw my doctor yesterday so I figured I would give you guys an update. I talked to her about some of the illnesses that I was told about by some of you, and an illness that I researched on my own.

1.) Sphincter of Oddi Dysfuntion - This is the illness that I had researched. It causes severe pain similar to gallbladder attacks because the Sphincter of Oddi cannot relax properly. I brought it up because I'm still in pain even after having my gallbladder removed. She said that it was a strong possibility, and that I should definitely be tested for it.

2.) Eosinophilic Disorders - I told her how my symptoms match pretty well with eos. She said that it should show up in my blood work if there is an excess number of eosinophils, and my blood work has been normal. I know that the true diagnosis is made by an endoscopic biopsy, so it's something that I'll still pursue once I find a gastroenterologist.

3.) Lyme Disease - I asked her if I have ever been tested for it, and after looking through my records, she said no. So she decided to test me for it, and I had my blood drawn for it. I'm not sure what lab she used for the Lyme test. I know that Igenex is considered to be the best, and hopefully she used it, but we'll see after the results are in.

She also decided to stool test me again for yeast, parasites, and dysbiotic bacteria, which I think is a really good idea. It's been almost a year since my last comprehensive stool test, and last time I had both a candida and pseudomonas overgrowth. So I'll be doing that in the next few days, and I should get the results back when I see her again in a month.

She also thinks that I need to see a new gastroenterologist, so she gave me the name of a great doctor at Boston Children's Hospital. I'm not sure if anyone has heard of him, but his name is Timothy Buie. She's hoping that he could refer me to a good gasrtoenterologist who treats adults. She told me that Dr. Buie treats autistic children and believes that there is a strong mind-gut connection, which is different than what most other gastroenterologists think. And I definitely think that I need a gastroenterologist who thinks differently. So hopefully he can refer me to someone like him.

Thankfully, she also said that she has no problem continuing the TPN until we figure something out. That definitely takes a load off of my shoulders. But anyway that's about it. Thanks for listening!

-Brian

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

Celiac.com Sponsor (A8-M):


blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi Brian,

Nice to hear an update! Thanks for sharing. let us know how you make out with the new GI in Boston. :)

tarnalberry Community Regular
tarnalberry
Posted

Good luck on the progress!

dlp252 Apprentice
dlp252
Posted

Great update! Thanks!

JulesNZN Newbie
JulesNZN
Posted

I see a great gastroenterologist at NEMC in Boston, they have several different MDs all for adults all with different specialties. You should try there, they are very informed about Celiacs I found when I went in for my gastoparesis. :)

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Thanks for the recommendation. It's good to hear that they are well-versed in Celiac Disease. I just hope I can find someone who will go beyond the standard tests and figure something out. The only thing that I'm concerned about in Boston is that the doctors are extremely full of themselves. And because of that, if they can't figure out what's wrong with you, it must be your fault because it's "all in your head". I had a whole team of doctors working on my case at Beth Israel, but when they couldn't figure anything out, they threw up their hands and sent in a psychiatrist. Hopefully it will be different this time,

-Brian

happygirl Collaborator
happygirl
Posted

Thanks for the update, Brian, and hope that you find some answers soon.

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

Celiac.com Sponsor (A8-M):


Glutenfreefamily Enthusiast
Glutenfreefamily
Posted

Good Luck at the dr's I hope they find some answers for you :)

pixiegirl Enthusiast
pixiegirl
Posted

I'm on Cape Cod. When I went gluten-free about 6 years ago that made most of my symptoms go away. I had a good GI dr. and did have blood tests for EOS disease and they were really in the ok range.

Then I was scoped and I had tons of areas that tested positive for EGID (eosinophilic gastroenteritis intestinal disease).

So I don't think a blood test is the be all and end all for that.

I'm glad your continuing to look for issues, it certainly can take a long time!

Susan

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 HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      My dad had an Abdominal Aortic Aneurysm. Fortunately, it was discovered during an exam. The doctor could feel my dad's heart beating in his stomach. The aneurysm burst when the doctor first touched it in surgery. Since he was already hooked up to the bypass machine, my dad survived ten more years. Close call! Triple A's can press on the nerves in...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    5. AutomatedGlutenEjector
      - AutomatedGlutenEjector commented on Scott Adams's article in Latest Research
      71

      COVID-19 a Possible Trigger for Celiac Disease in Those with Genetic Risk

      This hypothesis certainly lines up with my experience. Avoided getting Covid until August 2022. Celiac diagnosis three months later, and they think they caught it early (not a ton of damage in my EGD). I'd suspected the connection before, so it's nice to see researchers are interested in this question.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,063
    • Most Online (within 30 mins)
      10,442
    Juls9503
    Newest Member
    Juls9503
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
×
×
  • Create New...