Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Dr. Says I Don't Have Celiac


Katerific

Recommended Posts

Katerific Explorer

I went to see a gastroenterologist for heartburn and gave my history as having Celiac. I explained my Mom has it, my sister has it and I self-diagnosed after having constipation my whole life. He told me that I don't have celiac but if it makes me feel better to not eat gluten, then OK. He meant mentally feel better. I have been totally gluten free for 1 1/2 years and have never felt better, until this morning. Last night we went to a dinner party and along came cheesecake for dessert. Thinking that I should test the doctor's theory, I scraped off the cheesecake from the crust, but I know I got a few crumbs. Today I have had the worst diarrhea ever. I am certain I am clean enough for a colonoscopy! Well, at least I don't feel stupid for self-diagnosing. I have noticed how less and less amounts of gluten cause stronger reactions as time goes by being gluten-free.

Teresa


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



Celiac.com Sponsor (A8-M):



GeoffCJ Enthusiast
I went to see a gastroenterologist for heartburn and gave my history as having Celiac. I explained my Mom has it, my sister has it and I self-diagnosed after having constipation my whole life. He told me that I don't have celiac but if it makes me feel better to not eat gluten, then OK. He meant mentally feel better. I have been totally gluten free for 1 1/2 years and have never felt better, until this morning. Last night we went to a dinner party and along came cheesecake for dessert. Thinking that I should test the doctor's theory, I scraped off the cheesecake from the crust, but I know I got a few crumbs. Today I have had the worst diarrhea ever. I am certain I am clean enough for a colonoscopy! Well, at least I don't feel stupid for self-diagnosing. I have noticed how less and less amounts of gluten cause stronger reactions as time goes by being gluten-free.

Teresa

On what basis did you say he don't have Celiacs? I mean, why does he think you don't?

Katerific Explorer
On what basis did you say he don't have Celiacs? I mean, why does he think you don't?

He and my family doctor think that Celiacs only have diarrhea. I tell them that the chronic constipation was my problem.

Lisa Mentor

Teresa:

I am sorry that you are feeling bad today.

Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, which is corrected with the same diet.

I too have found that the longer I am gluten free, the more sensitive I am to gluten, where as, I may not have been in the past.

This too shall pass, in the most literal way. :rolleyes:

jerseyangel Proficient

Teresa,

I'm sorry to say that your doctor can not say you don't have Celiac by just looking at you--and he's wrong--constipation is also a common symptom.

Katerific Explorer
Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, wish is corrected with the same diet.

He did explain the difference between Celiac and gluten sensitivity. I guess in my mind I didn't think that gluten sensitivity would cause such an "explosive" reaction today when I used to eat gluten by the basket-full without getting diarrhea. My Mom did have totally flattened villi and since I inherited all her other characteristics, maybe this too.

I really do like this doctor. He took time and explained what I needed to know about the heartburn. I will listen to my body when it comes to eating gluten.

Teresa

Lisa Mentor
Teresa:

I am sorry that you are feeling bad today.

Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, which is corrected with the same diet.

I too have found that the longer I am gluten free, the more sensitive I am to gluten, where as, I may not have been in the past.

This too shall pass, in the most literal way. :rolleyes:

OOps, I missed the self-diognosed information. Thank you Patti.


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

I'm sorry you got sick, that is no fun :(

The doctor did not have any evidence to back up his assumption. He should have pursued a gene test for you since any other tests could be false negative. Regardless, your dietary test was positive and celiac disease runs in your family. I would say that your chances of having celiac disease are high.

Ursa Major Collaborator

Carrie is right. With a mother who has celiac disease, and you having obvious symptoms, you are more likely than not to have celiac disease as well, no matter what the doctor says. Good for you for standing your ground. My doctor didn't think I could have celiac disease either, her ONLY reason being, that I wasn't losing weight (I had all the other symptoms, including diarrhea). Your doctor is misinformed. Ignore him.

CMCM Rising Star

Teresa....my doctor did the usual celiac blood test on me and also said I don't have it. Maybe I don't, but my mother most definitely has it. My symptoms weren't classic like my mom's....I didn't lose weight, and I didn't get violently ill from it, but I was still sick a lot with all sorts of digestive woes and D, sometimes C, sometimes dizziness, sometimes nausea,....just all over the board. I finally got the full panel of tests at Enterolab, including a gene test, which showed I have one celiac gene and one gluten sensitivity gene. Since I didn't test high for malabsorption but I did test positive for the autoimmune reactions, Dr. Fine at Enterolab said either way, celiac or gluten sensitive, I should never eat gluten.

The medical community in general, and most certainly YOUR doctor in particular, is very very VERY undereducated about celiac disease and gluten sensitivity. What they know about it would fit on the head of a pin, frankly.

With your family history, your likelihood of having either celiac OR gluten sensitivity is extremely high given your observable symptoms. If you don't want to spend the $$ on the Enterolab testing, I'd suggest proceeding with the gluten free diet and see how you feel. Basically, that will tell you what you need to know. If you feel better within a few weeks, you've got your answer.

Don't take your doctor's pronouncement as the gospel truth. Do some reading on celiac disease and you'll know vastly more than he does! :P

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - daniellelawson2011 replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    2. - trents replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    3. - daniellelawson2011 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    4. - Joe R replied to Joe R's topic in Related Issues & Disorders
      2

      Immunologist Referral if IgA Deficient

    5. - nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Help needed


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,694
    • Most Online (within 30 mins)
      7,748

    Flara
    Newest Member
    Flara
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • daniellelawson2011
      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
    • Joe R
      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
×
×
  • Create New...