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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,376
    • Most Online (within 30 mins)
      7,748

    Citydweller
    Newest Member
    Citydweller
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.