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. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    2. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal. My TTG score was completely through the roof at the time, greater than 100 which was then the cut...
    3. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful...
    4. knitty kitty
      - knitty kitty replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!! This is why your endoscopy didn't show much damage to the intestinal lining!! The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs...
    5. knitty kitty
      - knitty kitty replied to kevert93's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Having issues with chips

      Hi, @kevert93, Those Gluten Assist enzymes digest carbohydrates, not just gluten specifically. Eating a high carbohydrate meal can deplete Thiamine Vitamin B 1 causing digestive symptoms like you describe. You could also be having difficulty digesting the oils used in those chips. Thiamine in the form Benfotiamine can help. We need the eight...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,184
    • Most Online (within 30 mins)
      10,442
    Dennis E. Schertz
    Newest Member
    Dennis E. Schertz
    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

    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
    • knitty kitty
      Coeliac or not coeliac

      By knitty kitty · Posted

      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!!  This is why your endoscopy didn't show much damage to the intestinal lining!!  The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs.   Proton pump inhibitors cause intestinal damage in the long run.  If you get off the Lansoprazole for a few months so your immune system is not blocked, then do a gluten challenge, and an endoscopy, THEN they would see intestinal damage. Sheesh!  Doctors can be so ignorant.  I've seen this so many times it's frustrating! Take the B Complex and Benfotiamine.  Get off the Lansoprazole.  Go with the DNA test results.   Welcome to the tribe! P.S. B vitamins are needed to correct anemia!  Not just iron.  
    • knitty kitty
      Having issues with chips

      By knitty kitty · Posted

      Hi, @kevert93, Those Gluten Assist enzymes digest carbohydrates, not just gluten specifically.  Eating a high carbohydrate meal can deplete Thiamine Vitamin B 1 causing digestive symptoms like you describe.  You could also be having difficulty digesting the oils used in those chips.  Thiamine in the form Benfotiamine can help. We need the eight B vitamins to digest our food, carbs, fats and proteins.  Poor digestion can cause symptoms like vomiting and stomach pain, brain fog, headaches, exhaustion.  Try taking a B Complex with the activated forms of the B vitamins (Life Extension's Bioactive B Complex is great!) and additional Benfotiamine.  The B vitamins are used to make digestive enzymes and will allow your digestive system to function properly.  The B vitamins also will improve headaches, exhaustion, and brain function.  Taking Thiamine in the form Benfotiamine will improve digestive symptoms and lower inflammation, too.  Benfotiamine and the B vitamins are safe.  The B vitamins are chemical compounds found in whole foods, not in highly processed foods like chips.   The body cannot make the B vitamins, so supplementing is beneficial.  Benfotiamine is safe and nontoxic even in high doses.
×
×
  • Create New...