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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.