Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Gi Specialist Says It's Not Celiac

Melstar23

Recommended Posts

Melstar23 Apprentice
Melstar23
Posted

I saw a GI specialist today and the hospital. I have been waiting many months to see him and after this I don't have anymore answers.

I have been suspicious of celiac as I was getting severe pain on my left side, floating yellow stools, bloating, wind, tiredness. All of which has resolved since I have cut out gluten and return worse even when I have a little bit, and now I also get diarrhoea.

I have had a stack of blood test and scans for all sorts of things, everything thing has come back negative. I was found to have the Celiac gene, but my Celiac panel and gastroscope biopsies are completely negative. (I was 4 months gluten free when I had these tests and all the doctors/specialists are aware of this.)

The GI specialist said that I am definitely not celiac based on the blood tests and gastroscope biopsies and the fact that my pain was on the left side, and he doesn't think I should be avoiding gluten. He said I shouldn't worry about cross contamination, and if he was me he would probably avoid wheat if he felt it improved quality of life, but would try eating again other sources of gluten. He said I shouldn't get caught up in the gluten free lifestyle, worry about eating out or getting tricked into wasting my money on gluten-free products because I am not celiac.

I'm not sure what to do, I was so sick 5 months ago and I really thought I had found my answer. I guess I can try and add it back into my diet and see how it goes. My partner thinks I should stay gluten free because he knows how sick I was before and what a big difference it has been since I changed my diet. This whole experience has been depressing, I am just left feeling that doctors have no idea what is happening most of the time and the don't care. I really have lost faith in the medical profession.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

You are not celiac, and you shouldn't get caught up in the gluten free lifestyle, but you can't eat gluten :unsure:

Of course everything was negative if you were not eating gluten - and it may well have been negative even if you had been, because you may be gluten intolerant rather than diagnosable celiac.

With apologies to Scott because this is the Celiac.com forum, but I am becoming more and more of the opinion that celiac is just a tip of the gluten intolerance iceberg which encompasses something more, something bigger, the elephant in the room that no one can see.

It is, of course, your choice whether or not you wish to consume gluten; you do not need to have the doctor's permission. The blood and biopsy tests have known false negative rates of about 20%. If I were you I would stay gluten free and healthy. Just my two and a half cents worth.

starrytrekchic Apprentice
starrytrekchic
Posted

The blood tests don't mean anything and shouldn't even be considered in your diagnosis with you having been gluten free before them for four months. The biopsy results don't mean much either.

Stay gluten free. You feel better that way, so why would you go back to gluten? You don't need an official diagnosis for anything, and if you find you do, you can always do a gluten challenge in the future and retake the bloodtest.

Skylark Collaborator
Skylark
Posted

Trust your body, not tests that were done after you were gluten-free for four months and feeling better. If you feel that much better gluten free, who cares whether a dude in a white coat with an overpriced diploma pronounces you celiac?

Maggie Mermaid Apprentice
Maggie Mermaid
Posted

Listen to your body. If you feel better when you avoid wheat, then avoid wheat. Stephen Wangen's book "Healthier Without Wheat" discusses Non-Celiac Gluten Intolerance which could be your situation. You can be gluten-intolerant and not meet the classical signs of being celiac. Just saying. Not doctors have the latest and greatest information.

nora-n Rookie
nora-n
Posted

Yopu have a celiac gene, and got better after going gluten free.

Of course the blood tests went negative after going gluten free.

some people in circumstances like this get tested by Enterolab, privately. Teier tests are very sensitive, but they cannot diagnose celiac, just gluten sensitivity.

ravenwoodglass Mentor
ravenwoodglass
Posted

Of course your tests were negative, you have been gluten free for months and healed. Listen to your body not that doctor. The same thing happened to someone in my family. Instead of telling you that you should go back to a gluten diet the doctor should have congratulated you for how well you are doing on it.

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

Celiac.com Sponsor (A8-M):


Melstar23 Apprentice
Melstar23
Posted
  • Author

Thanks for everyone's replies. I am just frustrated by the lack of support that I have from doctors. This specialist only saw me once yesterday. I've been well for about 5 months now with only short relapses when I have not been as careful with my diet. My main GP told me that I had Gluten Intolerance, but I could eat gluten sometimes. Then he gave me some printouts about Gluten Intolerance which said that it was probably psychological issues with food. Then I found another GP, who said that my symptoms matched Celiac, but since my Celiac tests came back negative it could IBS caused by stress and she started going on about how she thought my job in a call centre would be really stressful (occassionally it is, but most of the time it is an easy job) and asking me about problems with my partner (there are none). Then there was this specialist... he also made a point of commenting that I must work in a really stressful environment. Why can't they believe that the diet has worked? I feel like I know better what is happening with my body than they do and in the end I have wasted so much time and money looking for reassurance to get nothing.

Since I have given up gluten, I have found out that two of my Auntie's have had abdominal pains and other GI symptoms since they have been in their 30's (they are in their 60's now) and have been told by doctors that there is nothing wrong with them, pain, bloating and regular bouts of diarrhoea/constipation is just someting that you have to live with. Doctors ask me about my family history, but then they dismiss it because no one has an official diagnosis.

Sorry about the rant, I just needed to get my frustration out.

Does anyone know if there is no damage in the intestines from gluten, does that mean the other health problems associated with celiac are not at risk if small amount do get consumed? I would like to believe what the specialist has said about not worrying about my reactions after cross-contamination. I feel like have gone crazy, my body is telling me I should trust my gut, but my brain still wants to believe these dr's have said. :angry:

mushroom Proficient
mushroom
Posted

Trust your gut! You know your body better than someone in a white coat does - you live in it every day. And if the white coats don't know that the tests are meaningless in someone who is gluten free for four months, well, they shouldn't be wearing those white coats. Do what makes you well.

ravenwoodglass Mentor
ravenwoodglass
Posted

Trust your gut! You know your body better than someone in a white coat does - you live in it every day. And if the white coats don't know that the tests are meaningless in someone who is gluten free for four months, well, they shouldn't be wearing those white coats. Do what makes you well.

Yea I agree. Some doctors are less than worthless when it comes to celiac. These doctors make me so darn angry!!!!!

Takala Enthusiast
Takala
Posted

I wonder if by any chance this one is related to the Neurologist From H*ll.

Oh My God, caught up in the gluten free lifestyle !

I'm heading into year 8 on that with no official diagnosis, but I was so far gone there were holes in my head, literally, brain lesions, and they were still calling me a head case.

Just stick to the gluten free diet as strictly as possible. You are hereby granted permission to enjoy the rest of your life.

Of course if any of these peeps are listed on one of those dr. ratings websites you could rate them.... ;)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jmartes71
      - Jmartes71 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Beware Taila gluten-free frozen pizzas

      I just went ti Sprouts today after we dropped off my grandson at home.The brand Talia I almost bought.i was looking forward and saw that it DOES contain and in Itty bitty small sentence, ( those with sensitive diagetive shouldn't consum.I ALMOST bought, PLEASE READ EVERY LABEL so you don't get glutened!
    2. cristiana
      - cristiana replied to cristiana's topic in Related Issues & Disorders
      29

      Ectopic heartbeats - any relation to digestive issues?

      I just thought I'd update this post. My father has had some issues with his heart rythym and we found giving him an electrolyte drink plus a vitamin D supplement with extra calcium containing food (yoghurt) made a big difference, and very quickly. My own problems with ectopic heartbeats started up again with warmer weather so I thought I'd take...
    3. Helen Vajk
      - Helen Vajk commented on Lindsay Cochrane's article in Spring 2007 Issue
      2

      The Kiss of Death: How My Romantic Life Suffered after being Diagnosed with Celiac Disease

      Bravely spoken. My son was only 2 years old when diagnosed, and certainly felt challenged by being different, and had behavior issues. A pediatrician who had treated many celiac kids once remarked at a seminar that even with behavior challenges in their youth, the celiac kids grew up by college age with great resources inside themselves for handling peer...
    4. Scott Adams
      0

      How Ancient DNA May Explain Why Celiac Disease Became So Common (+Video)

    5. Russ H
      - Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,199
    • Most Online (within 30 mins)
      10,442
    Tricia01
    Newest Member
    Tricia01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      Beware Taila gluten-free frozen pizzas

      By Jmartes71 · Posted

      I just went ti Sprouts today after we dropped off my grandson at home.The brand Talia I almost bought.i was looking forward and saw that it DOES contain and in Itty bitty small sentence,  ( those with sensitive diagetive shouldn't consum.I ALMOST bought, PLEASE READ EVERY LABEL so you don't get glutened!
    • cristiana
      Ectopic heartbeats - any relation to digestive issues?

      By cristiana · Posted

      I just thought I'd update this post. My father has had some issues with his heart rythym and we found giving him an electrolyte drink plus a vitamin D supplement with extra calcium containing food (yoghurt) made a big difference, and very quickly. My own problems with ectopic heartbeats started up again with warmer weather so I thought I'd take a leaf out of his book, and now, for the second time, after just one Phizz Electrolyte Drink, and a dose of vitamin D (Fultium D 800 x 4) with a milkshake, my ectopics disappeared within the hour.   Probably the Phizz drink rather than the D with calcium, but maybe it all helped?  Just mentioning this in case anyone is looking for answers.
    • Russ H
      Coeliac or not coeliac

      By Russ H · Posted

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      The Struggle Has Overtaken Me

      By Wheatwacked · Posted

      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
×
×
  • Create New...