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

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

  • 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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.