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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,772
    • Most Online (within 30 mins)
      7,748

    Claudia Hyde
    Newest Member
    Claudia Hyde
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jack Common
    • trents
      Eating out at restaurants is the single most risky environment for cross contamination.  Shared oven racks should be thoroughly cleaned after being used for cooking/baking of gluten containing foods. Better yet, purchase a second set of racks that are used only for one or the other.
    • Brandy969
      This is an expanding question on this topic, I’m not sure where to put it…. I get mixed answers on this but sense I’m Coeliac and my husband isn’t we do still use the same kitchen and cooking utensils-for the most part. I was told by dietitians and GI dr that only soap and water will “kill” the gluten. I am still so confused about this topic, even after being gluten-free for 3 years. I’m sure I’ve accidentally gotten cross contamination, but haven’t knowingly put anything with gluten in my mouth! I probably get more contamination from eating out than in our “shared kitchen”. I make all my bread in a gluten-free bread machine, and he generally uses a toaster oven to heat up gluten containing items. I bake both regular and gluten-free items in our oven, (Not at the same time). I’m constantly wiping down counters and cabinets with soap and water. I keep gluten-free items in a separate cabinet. I don’t seem to be super sensitive to gluten. I was confirmed by blood and on colonoscopy about 15 years ago, but continued eating Gluten not really knowing the damage I was doing to my body.  Can anything besides soap and water “kill” gluten? How hot would an oven have to be before killing it? So any kind of soap and any temp of water omit the gluten? That makes no sense to me if a 500 degree pizza oven won’t kill it. How can a dab of soap and lukewarm water do what heat can’t do?   thank you for putting this where it needs to be if this is the wrong spot!  sincerely needing advice, Brandy J  
    • trents
      I would say the tTG-IGA would be sufficient.
    • Jack Common
      I think I don't have any symptoms now. I have some fogginess but I'm not sure whether it's gluten. I think the gut related problems I described above were caused because I had giardiasis. It was treated and now I feel much better. However I started a gluten free diet after the parasite treatment so it's a bit unclear what was the reason. I'm going to repeat the tests after 2 months from now eating gluten to be sure it was giardiasis. Is it enough to do just "Deamidated gliadin peptide IgA" and "The Tissue Transglutaminase IgA antibody"? Because my Immunoglobulin A result is normal IgG tests are not necessary if I understand it right. By the way, Merry Christmas!
×
×
  • Create New...