Jump to content

  • 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):

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:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Stegosaurus
      - Stegosaurus replied to Mrs. Cedrone's topic in Related Issues & Disorders
      8

      Canker sores

      i used to get cold sores frequently before I went gluten free. Then I only got them when stressed. Then I cured my gut dysbiosis, and haven't had one in 20 years.
    2. dixonpete
      0

      There is a difficulty getting hookworm larvae into the US

    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      3

      Pear Bread

      To me, this bread is pretty special. The first time I tried adapting it I used a commercial gluten-free flour blend and it was good, but when I experimented using individual flours I tried the almond flour and it took it from good to special. I add walnuts or pecans to a lot of my desert bread recipes but I haven't tried nuts with this one. I would guess...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      3

      Sorghum, Kale and Roasted Cherry Tomato Salad

      It's kind of funny that before my celiac diagnosis I did a lot more "functional eating" where I just needed a meal and wasn't so worried about how interesting/delicious it was, just needed to eat something. After my diagnosis I've become a dedicated cook and I am very tuned into flavor and novelty. In answer to your question, I find the recipe very forgiving...
    5. Scott Adams
      0

      Classic French Comfort Made Safe: A Hearty Gluten-Free Cassoulet

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,004
    • Most Online (within 30 mins)
      10,442
    Jessie Howard
    Newest Member
    Jessie Howard
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Stegosaurus
      Canker sores

      By Stegosaurus · Posted

      i used to get cold sores frequently before I went gluten free.  Then I only got them when stressed.  Then I cured my gut dysbiosis, and haven't had one in 20 years.
    • Aretaeus Cappadocia
      Pear Bread

      By Aretaeus Cappadocia · Posted

      To me, this bread is pretty special. The first time I tried adapting it I used a commercial gluten-free flour blend and it was good, but when I experimented using individual flours I tried the almond flour and it took it from good to special. I add walnuts or pecans to a lot of my desert bread recipes but I haven't tried nuts with this one. I would guess that adding either of them would result in the whole being less than the sum of the parts because the almond and other nut flavors would be competing. I wouldn't want to add almonds because of the texture. But you never know until you try. Have not tried cinnamon in this recipe. I imagine it would work. As I modified this recipe from the original, I reduced the sugar. The posted recipe is what I currently use. You are right that the pears bring a little sweetness to it.
    • Aretaeus Cappadocia
      Sorghum, Kale and Roasted Cherry Tomato Salad

      By Aretaeus Cappadocia · Posted

      It's kind of funny that before my celiac diagnosis I did a lot more "functional eating" where I just needed a meal and wasn't so worried about how interesting/delicious it was, just needed to eat something. After my diagnosis I've become a dedicated cook and I am very tuned into flavor and novelty. In answer to your question, I find the recipe very forgiving for trying add-ins. I've supplemented the greens with green onions, bell pepper (any color), celery leaves and stalks, and fresh parsley. Sometimes I throw in pepitas (pumpkin seeds), craisins, walnuts and/or sunflower seeds. One thing I tried that didn't really work was currants. I think that maybe it's because they are too small and too sweet. I haven't experimented with cheeses beyond the 2 in the recipe. I would guess that grated hard cheeses would work, medium hard cheeses (like swiss or cheddar) might work, and soft cheeses would not.
    • Harris
      Pear Bread

      By Harris · Posted

      That actually sounds really nice. Pear bread feels like one of those things that would be soft and a little sweet without being too heavy. I like the idea of using fruit like that instead of just relying on sugar. It probably makes it feel more fresh and homemade. Have you tried adding anything like cinnamon or nuts to it, or do you keep it simple?
    • Harris
      Sorghum, Kale and Roasted Cherry Tomato Salad

      By Harris · Posted

      That actually sounds really good, I wouldn’t have thought to mix sorghum with kale but it makes sense. The roasted cherry tomatoes probably bring a nice bit of sweetness to balance everything out. I’ve been trying to find more simple gluten-free meals that don’t feel boring, and this feels like something you could make ahead and just keep eating through the week. Did you add anything else to it, like nuts or cheese, or keep it pretty simple?
×
×
  • Create New...