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

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748
    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    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

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.