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

Doctor Doesn't Think I Have It...

Chelle15

Recommended Posts

Chelle15 Apprentice
Chelle15
Posted

Ugh! It was not that I wanted to have a disease, but I wanted to have the ability to control my symptoms instead of it being IBS.

I went to see the GI doctor, he was a very nice man and listened intently to me. He went over the blood tests that my primary doctor did. He said they did a panel of 4, I think. He said, yes two did come back positive, but they are the least two significant positives on the panel. The other two more significant came back negative.

He is going to do the endoscope and colonoscopy. But he believes it is IBS, which I was diagnosed with before.

I felt like crying, I just want an answer to all of my problems and IBS is not a good enough answer for me. Based on what a lot of you have said in my prior posts, I may try a gluten free diet even if the endoscope comes back negative.

Any opinions would be appreciated. Thank you

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

personal opinion is to stop messing with Dr.s and just try the diet. If it works then viola! you have your answer. As much as the Dr.s like to rely on quantifiable tests, the truth is that the most valid diagnostic tool is how do you respond to the diet. Not, do you have sufficient damage YET to show up on tests... The blood tests and biopsy's are archaic and are only looking for the digestive symptom damage, not looking at any of the neurological symptoms or anything else for that matter. Based on my research even ONE positive in the panel is enough to suspect Celiac and then that can be CONFIRMED with positive dietary response. I was dx'ed with IBS 12 YEARS before I was dx'ed with Celiac. Had I been properly dx'ed back then how different would my life had been? First came the IBS dx, then came the Fibromyalgia dx, then the Infertility and Miscarriage issues, Depression/Anxiety disorder and on and on...

If YOU need a quantifiable test result, then Enterolab has a much better track record than any of the more conventional testing methods.

plantime Contributor
plantime
Posted

Even one positive result is still a positive result. Why do you need a doctor to do more tests? Try the gluten-free diet for 6 weeks, then evaluate how you feel.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am going to strongly agree with the other posters. Get on the diet and see what happens. Relying on the doctors I relied on delayed my diagnosis by many painfull years and resulted in complications both neurological and physical that would never have happened if they had told me to try the diet instead of relying on their imperfect tests. The diet has given me my life, health and sanity back. Trust yourself and how you feel on the diet. IMHO doctors are very reluctant to diagnose us because then we would know how long we had been misdiagnosed for. Do the diet and see how you feel that is the truest test.

Chelle15 Apprentice
Chelle15
Posted
  • Author

Again, thank you for all of your support and time. Your posts have been very helpful. I guess I just want a dx because I feel like everyone will think it is some weird thing I am doing and that it is all in my head. I know I should not care about that, but I just so sick of everyone telling me it's IBS or nothing is wrong. I do believe I will try the gluten free diet. I want to feel better, so much! My family has history and crohns and stuff so I will go forward with the other tests, just in case there is anything else in there.

rinne Apprentice
rinne
Posted

I agree with everyone above, try the diet as a diagnostic tool. See for yourself how you feel.

I am proceeding with tests to rule out other problems but I went gluten free the day I learned about Celiac and that my sister has it too. That was in early May and I am still not okay but I am doing better. I have also had to cut out dairy and nightshades and coffee and sugar....and what I have realized is that to get to the point where I lost 40 pounds, over 5 months, means that I am ill and that it will take time to recover.

My sister was diagnosed with IBS prior to the Celiac diagnosis, she was told that her primary problem was the IBS and that she had a wheat allergy and should avoid it. :angry: Not one word about gluten from the Doctor, she continued for five years to eat gluten and has gotten sicker and sicker. Do I trust Doctors? No.

bklynceliac Apprentice
bklynceliac
Posted

I'm surprised he was so discouraging even with some positive bloods. I had negative blood work and negative biopsies, but have responded extremely well to the diet. I have been told with certainty that I don't have the disease, and received a somewhat perfunctory "maybe it's ibs". I just saw a new doctor yesterday and he said "forgot the other doctors, do what's make you feel better". I was very happy to hear that. He told me I was crazy if I started eating gluten again if i knew it was making me sick. And he's a real doctor, not some hippy dippy herbalist or something. It's seems so obvious, but I really appreciated having a doctor say it.

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

Celiac.com Sponsor (A8-M):


wacky~jackie Rookie
wacky~jackie
Posted
Again, thank you for all of your support and time. Your posts have been very helpful. I guess I just want a dx because I feel like everyone will think it is some weird thing I am doing and that it is all in my head. I know I should not care about that, but I just so sick of everyone telling me it's IBS or nothing is wrong. I do believe I will try the gluten free diet. I want to feel better, so much! My family has history and crohns and stuff so I will go forward with the other tests, just in case there is anything else in there.

I can relate to your wanting a definite dx. I know we shouldn't worry about what others think but I know my family (not my husband & kids - but my in-laws and such) will think I'm just on another crazy diet like Atkins. I think I'll just tell them that I have been diagnosed. How will they know the difference. B)

Nancym Enthusiast
Nancym
Posted

IBS isn't a diagnosis. It's a catch-all for "we don't know".

I suggest, you just go on the gluten-free diet and see how it works. That's how I came by my diagnosis, and I had IBS for years and years. If you want something official looking, get tested by Enterolab.com. It's the only decent test out there (IMHO).

Deb O (UK) Apprentice
Deb O (UK)
Posted
personal opinion is to stop messing with Dr.s and just try the diet. If it works then viola! you have your answer. As much as the Dr.s like to rely on quantifiable tests, the truth is that the most valid diagnostic tool is how do you respond to the diet. Not, do you have sufficient damage YET to show up on tests... The blood tests and biopsy's are archaic and are only looking for the digestive symptom damage, not looking at any of the neurological symptoms or anything else for that matter. Based on my research even ONE positive in the panel is enough to suspect Celiac and then that can be CONFIRMED with positive dietary response. I was dx'ed with IBS 12 YEARS before I was dx'ed with Celiac. Had I been properly dx'ed back then how different would my life had been? First came the IBS dx, then came the Fibromyalgia dx, then the Infertility and Miscarriage issues, Depression/Anxiety disorder and on and on...

If YOU need a quantifiable test result, then Enterolab has a much better track record than any of the more conventional testing methods.

I agree!! I have recently tested positive on 1 antibody and like so many others I've spent time wondering what that means and if I ought to have a biopsy etc. I was dx with IBS about 12 years ago and it was about 20 years ago that my stomach started bloating. I've now got a new doctor who, when I described my symptoms, said straight away that he'd check my blood for celiac (and many other things). On getting the result he referred me to a dietician. I saw him again yesterday to talk with him about a biopsy. He was brilliant - he discussed it WITH me and said it was an option, but like Nini he asked what is the point? He encouraged me to get started on the diet and said that feeling better on a gluten-free diet would be my diagnosis. What with the support I've recieved from this board, and a sensible doctor, I feel I'm on my way to recovery, without yet going gluten-free :D

I'm getting things in place and hope to start gluten-free in a couple of weeks and I can't wait :lol:

Chelle15 Apprentice
Chelle15
Posted
  • Author

Thank you so much for your responses. It really helps. I guess I just always feel like a hypocondriac(sp?), and I feel like everyone else thinks that too. That is the reason for a dx, for my own peace of mind. I LOVE this board.

Thank you , thank you...

jcc Rookie
jcc
Posted
Ugh! It was not that I wanted to have a disease, but I wanted to have the ability to control my symptoms instead of it being IBS.

I went to see the GI doctor, he was a very nice man and listened intently to me. He went over the blood tests that my primary doctor did. He said they did a panel of 4, I think. He said, yes two did come back positive, but they are the least two significant positives on the panel. The other two more significant came back negative.

He is going to do the endoscope and colonoscopy. But he believes it is IBS, which I was diagnosed with before.

I felt like crying, I just want an answer to all of my problems and IBS is not a good enough answer for me. Based on what a lot of you have said in my prior posts, I may try a gluten free diet even if the endoscope comes back negative.

Any opinions would be appreciated. Thank you

Check out the pages on Diagnostic Testing (including Delay of Diagnosis) and Fibromyalgia (there is more "IBS" in there). I agree with others who say that a dietary trial is a wise move. My daughter had only an isolated antigliadin IgG of 30, the weakest of the markers. She had chronic diarrhea for two years and neurological symptoms...and some rashes...everything resolved gluten free.

Open Original Shared Link

Be sure to request copies of your blood results and your biopsy report!

jcc

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,374
    • Most Online (within 30 mins)
      7,748
    Eshugumi
    Newest Member
    Eshugumi
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • aperlo34
      2 months in... struggling with symptoms

      By aperlo34 · Posted

      @cristiana Yes - just to add to this: my ferritin went down after my first 2 infusions (which were 8 months ago), so I got more infusions a couple of weeks ago. From those alone, I'm feeling better. It's a work in progress! Be patient! I was also taking iron supplements the entire time.  
    • cristiana
      2 months in... struggling with symptoms

      By cristiana · Posted

      @OlafAndvarafors  I just wanted to reassure you that I had these same issues for a while before and after diagnosis but they did settle.  I think the deficiencies and anxiety that are very common in undiagnosed/newly diagnosed coeliacs are a perfect mix for twitching!  I cannot say exactly how long you will experience this but my feeling that once you are properly diagnosed and it is found to be that gluten is an issue, get your vitamin/mineral levels assessed and if they are low/low normal, don't hesitate to supplement until the levels normalise.   I was Iron anaemic, and low normal with B12.   Once my levels of iron were normal, and B12 nearer 500, my symptoms reduced greatly, and I found magnesium helped A LOT with twitching face muscles in particular.  However - word of caution with iron: if you do need to supplement, have regular blood tests to check levels as too much iron can be dangerous.      
    • Wheatwacked
      2 months in... struggling with symptoms

      By Wheatwacked · Posted

      a deficiency in thiamine (vitamin B1) can contribute to muscle twitching, especially in more severe cases of thiamine deficiency. Thiamine is crucial for nerve function and energy production, and its deficiency can disrupt muscle contraction and nerve signals.  Lots of Thiamine a day, several hundred mg, to reverse thiamine deficiency.  The usual dose for adults is between 25mg and 100mg, taken once a day. Severe thiamine deficiency The usual dose for adults is 100mg, taken 2 or 3 times a day.  
    • Ccoast Celiac
      Progesterone pills - are they gluten free??

      By Ccoast Celiac · Posted

      Hi @Mettedkny I’ve had the same problem with Xiromed Progesterone 100 Caps. I’m very careful about gluten and only have had gluten “gut issues” since starting these. I previously had another brand, and no problems. So, even if Xiromed says “gluten free” perhaps in the manufacturing process there is gluten cross-contamination. I’m already requesting a different manufacturer to see if there is improvement.  
    • Scott Adams
      To kiss or not to kiss: Can gluten pass through a smooch?

      By Scott Adams · Posted

      I thought I'd share this article about recent findings that not enough gluten is transmitted during kissing to be concerned about: https://www.eurekalert.org/news-releases/1082120  What do you think?
×
×
  • Create New...