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
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.