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

New To Forum- Questions!


Nathan1097

Recommended Posts

Nathan1097 Newbie

Long story short...

I have had bad intestinal infections for years, which have increased over the last year. They diagnosed me with "ileitus" as when I have these flareups, my white blood cell count goes way up. The pain has been enough to "win" me morphine in the ER. I was hospitalized for five days while they ran tests. They came up with nothing. I have had CT scans, xrays, colonoscopies, fecal testing.... everything. The GI dr. I saw- head of the department and the big university here- said he had no idea!

So my bf suggested I cut out gluten. So far, so good, although I did have a small bout of my "problem" (without the sweating and fainting and vommiting, but with diarhea and ache) about a month ago, but it was very mild compared to usual.

Now, my issue is that no matter what I do, I feel faint, tired, and have diarrhea most of the time. I came accross this forum from google where I found this old page of posts: Open Original Shared Link

My bp was 92/55 yesterday at the dr's. She didn't seem to think anything of it, but it normally runs 110/80 or so.

Now mind you- I'd rather have diarhea than what feels like a blockage with the horrible pain and vommiting all night that goes with my "episodes".... But the faint thing is a little embarassing. It feels a bit like I'm pregnant, but I know I am not. (Just had a test at the ER on Tuesday, plus I'm on B/C.)

I am not losing weight that I know of. When I was exercising more I got to be borderline too thin, but now I've just reached a plateau.

Looking forward to reading.

Jennie


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



Celiac.com Sponsor (A8-M):



little d Enthusiast

Hi sorry to here everything that you are going through. I have never heard of fainting with celiac disease but ok the rest of you symptoms sound like that you can be intolerant to Gluten. You just have to remember the Gluten and wheat is in everything, even your shampoo I was reading my Conditioner and it has wheat somethingorther in it, keep looking on the net to get a list of things that are not safe. All my test came negative but I know that i have some kind of intolarance.

Donna from tx

mommida Enthusiast

Are you anemic? All your symptoms and the fainting can be from low blood iron.

L.

dionnek Enthusiast

I too had the "spells" you are talking about for many years (at least 20) prior to finally being dx with celiac last year. I would, out of the blue, start getting dizzy and nauseas and sweating and then either pass out or start vomitting and have D and vomitting for about 12 hours. When I was a kid they thought it was b/c I was anemic that I was passing out, but even 3 iron pills a day didn't do any good (in retrospect, that would have been b/c I had celiac and nothing was being absorbed!). Since going gluten-free, I have not had any of these spells except for one time recently, and that was probably related to something else (I'm 7 months pregnant).

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,625
    • Most Online (within 30 mins)
      7,748

    Barb2
    Newest Member
    Barb2
    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

    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.