Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Apparently Not Celiac But Still Worried.


shoequeen

Recommended Posts

shoequeen Rookie

Ok, so I have been on here before, describing symptoms and whatnot, I just wanted to give a final update and see what you all think.

About now, 8 months ago I began having stomach issues, it started slow but then developed into terrible attacks whenever I would eat anything with any significant fat in it, it would start with heartburn, turn into intermittent nausea, urgency and sometimes even the runs. It was mostly random, but definitely aggravated by stress and fat. I had a bunch of testing and they found nothing, and said if it continues to get an endoscopy and colonoscopy. 6 months later, I got those tests too. After I woke up, he said I have celiac


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

Ok, so I have been on here before, describing symptoms and whatnot, I just wanted to give a final update and see what you all think.

About now, 8 months ago I began having stomach issues, it started slow but then developed into terrible attacks whenever I would eat anything with any significant fat in it, it would start with heartburn, turn into intermittent nausea, urgency and sometimes even the runs. It was mostly random, but definitely aggravated by stress and fat. I had a bunch of testing and they found nothing, and said if it continues to get an endoscopy and colonoscopy. 6 months later, I got those tests too. After I woke up, he said I have celiac

starrytrekchic Apprentice

GFMama answered very well. I concur on the gallbladder. Here are a few other things, though.

A lot of people feel worse when they start gluten free. The body will go through withdrawal. Also, people start reacting to smaller amounts of gluten, so foods that were fine before might not be after a few weeks. Additionally, your villi are damaged, which limits your ability to consume large amounts of any one food, such as dairy.

3 weeks is no time at all. It may have seemed like a long time, but a true gluten-free test would last at least 6 months. Saying that you should respond in three weeks is unheard of. It takes months just to get the diet down so that you're not making mistakes, and any one mistake can lead to symptoms up to a week.

A biopsy trumps bloodwork every time.

IBS is not a diagnosis, and any doctor describing it as such isn't any good. It's like going to the doctor and saying your head hurts, and him diagnosing you as having a headache. That's nice & all, but you need to know what's causing the symptoms in the first place.

You need to go back gluten free, check everything you're eating to find out if it was cross-contaminated in factory, learn the labeling laws, check all your meds, supplements, and hygiene products, and stay that way for at least 6 months, to see if you improve. And chuck this new doctor!

IrishHeart Veteran

Ditto and double ditto...these two said it best!!!

I am thinking a positive gene test

plus

blunted villi

equals

celiac.

Blood tests are often wrong.

You felt lousy for 3 weeks because you had gluten withdrawal.

IBS is NOT a diagnosis. It's a catch-all that leaves millions undiagnosed for other diseases, including celiac. Any GI doctor who is too lazy to test says "you just have IBS" and loads you up with drugs. You still suffer every day .

The question is always...WHY IS my BOWEL Irritable?? It's irritable for SOME reason!!!! :blink:

This is my humble opinion.... and 12 years of a bogus "IBS diagnosis" myself.

3 months gluten free--and a proper diagnosis-- and I feel better than I have in years. IBS--what a load of crap. :lol:

Go with your "gut"...stay off gluten AND dairy for at least 6 months and see how you feel. It takes 6 months to 2 years to heal. As you say, you don't want to find out down the road that you made a huge mistake.

Of course, the decision is ultimately yours. Best wishes!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,168
    • Most Online (within 30 mins)
      7,748

    watsonjennifer12
    Newest Member
    watsonjennifer12
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...