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

So I Finally Got All The Results Back From My Testing...


Myrna

Recommended Posts

Myrna Newbie

And everything was negative! I was tested for parasites, stomach emptying, endoscopy, colonoscopy, blood tests, and biopsies for Celiac, so my Doc said basically that it's GERDs and IBS. And just take immodium and a prescription for my nausea.

I know that I've had problems D-wise when eating wheat products. The doc just ignored that. He didn't really give me much info on IBS either. He said I probably had an infection some time ago (that I didn't realize I had had) and that's what triggered it. I asked him if it could be triggered by food and he just said yes for some and no to other, but don't worry about it.

I feel somewhat unsatisfied, I don't know why. It's not that I wanted something really wrong with me, just maybe something that was more definitive, and that I could do something about rather than the just live with it advice he gave me. So is that it for testing and what I can do? I'm taking wheat out of my diet anyway, and I'm wondering if I should try to take out gluten too?

BTW Symptoms for the past 9 months since my appendectomy include: diarrhea (tends to come in waves), sour stomach sometimes w/regurgitation, bloating, gas, fatigue, hypoglycemia, and last year I had severe vomiting for hours every month, until I had my appendix removed.


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



Celiac.com Sponsor (A8-M):



sugarsue Enthusiast
And everything was negative! I was tested for parasites, stomach emptying, endoscopy, colonoscopy, blood tests, and biopsies for Celiac, so my Doc said basically that it's GERDs and IBS. And just take immodium and a prescription for my nausea.

I know that I've had problems D-wise when eating wheat products. The doc just ignored that. He didn't really give me much info on IBS either. He said I probably had an infection some time ago (that I didn't realize I had had) and that's what triggered it. I asked him if it could be triggered by food and he just said yes for some and no to other, but don't worry about it.

I feel somewhat unsatisfied, I don't know why. It's not that I wanted something really wrong with me, just maybe something that was more definitive, and that I could do something about rather than the just live with it advice he gave me. So is that it for testing and what I can do? I'm taking wheat out of my diet anyway, and I'm wondering if I should try to take out gluten too?

BTW Symptoms for the past 9 months since my appendectomy include: diarrhea (tends to come in waves), sour stomach sometimes w/regurgitation, bloating, gas, fatigue, hypoglycemia, and last year I had severe vomiting for hours every month, until I had my appendix removed.

Hi, I'm sorry you are sick and not getting helpful responses from your doctor! I hope this post is not too annoying, especially since I don't know much about all this, but I was wondering, when you got your appendectomy, did you go on antibiotics? I had some huge bowel problems in the past after taking antibiotics and was much improved after taking a lot of probiotics. Just a thought I thought I'd pass along, just in case..... You could check out the Candida symptoms lists, they are quite extensive. Good luck to you!

Susan

ShayFL Enthusiast

Probiotics would be a good call. Did they test your gallbladder?

Myrna Newbie

Thanks for the replies sugarsue & ShayFL.

Yes, he put me on a probiotics for 3 weeks or so, but no improvement. I didn't have my gallbladder looked at recently, but before I was diagnosed with the appendicitis, my gall bladder was thoroughly check and was very healthy.

Amyleigh0007 Enthusiast

A dx of IBS is very frustrating. I was dx when I was 14 but nothing helped except going gluten free. I would go totally gluten free, if I were you. If you aren't happy with your doctor try a different kind of doctor. I went to an allergist after my regular doctor pushed me aside. I was very surprised with how much she knew about Celiac. By going gluten free you have nothing to lose except the diarrhea, nausea, bloating, gas, etc. :)

lizard00 Enthusiast

Did your problems start after your surgery? Sometimes, surgery can trigger Celiac since it's pretty traumatic to the body. And many of the tests are calibrated to be positive when damage is severe. Could be that you are not at the severe point yet (with only 9 months of symptoms).

Get a copy of your results and post them here. Many eyes are good, and sometimes GP's just aren't totally clued in on how to read them.

Myrna Newbie

Amyleigh0007: I'm thinking of going gluten-free, but it's intimidating, especially hard w/o a diagnoses. I did try it for a week a few months ago and felt great, but the docs seemed to think that didn't mean much. I've been to 2 GI docs. the first was a jerk; the second better, in that he was willing & tried all the tests he could. My GP suspected celiac, even after my neg blood test, that's why I was referred to the GI doc. The nutritionist I saw (for my hypoglycemia) was really nice and said everything sounded connected and similar to Celiac.

lizard00: All the bowel problems started after my surgery. Before this year, I've never had issues. I've always been very healthy, like barely get a cold kind of healthy. Last year's vomiting episodes might be linked to the appendix according to some, but the GI doc said it might have been related to my current symptoms. I think he really thought my stomach wasn't emptying.

How long does it take for damage to show up in a biopsy?


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



Celiac.com Sponsor (A8-M):



ksymonds84 Enthusiast

I was diagnosed as IBS 20 years ago and Have had problems ever since (I am 43 now). Wheat was what I always thought was a trigger food especially when I went off bread doing the atkins when I was younger and felt fantastic. Shari Lieberman is a very well known nutritionist that specializes in gluten intolerance and celiac. She says she always puts her patients that were diagnosed with IBS on a gluten free diet for 3 months to see if it will help. I highly recommend you read her book "The Gluten Connection". No she doesn't blame everything on Gluten but see's a very high relationship to Gluten Intolerance with IBS, Lupus, MS, GERD, etc. I learned alot from her. Even though my tests were negative (and they will be if you don't have enough damage to produce the antibodies) I stayed with the gluten free diet from January to March then challenged it and all my IBS symptoms came back. Luckily I have a good doctor who diagnosed me gluten intolerant because of this challenge. I know its frusterating when your doc is not that helpful but luckily you can try the diet and see if your body responds and you don't need his permission! If you google IBS triggers you will find sites that include wheat, gluten, dairy etc as common trigger foods. I'm one of those that believes IBS is only a catch all diagnoses when the docs can't find anything but does mean something is irritating your digestive system and going gluten free will tell you if gluten intolerance is giving you these symptoms. Dairy is also a big trigger for people who say they have IBS so you may want to do that at the same time to make it easier. Good luck and let us know how you are doing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,676
    • Most Online (within 30 mins)
      7,748

    AW1851
    Newest Member
    AW1851
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. 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.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.