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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.