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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

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Good luck on the progress!

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Great update! Thanks!

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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. :)

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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

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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

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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