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

Blood Test Positive - Biopsy Nothing?

lucylooo

By lucylooo
in Doctors

Recommended Posts

lucylooo Rookie
lucylooo
Posted

Hi all :)

I will try and keep this shortish!

So my sister has celiac she had it bad! I have a few symptoms i have tooth enamel problems, I have psoriasis really bad (dry itchy scalp)- this is meant to be linked. Also feeling tired and unable to gain weight etc. I few months ago i didn't eat all day at work as it made me so tired, i had more energy not eating. I could barley talk i would get so tired - so i thought i must have celiac - as my sister was exactly them same! I left the job and felt a lot better, i do get tired but not the same, so i thought maybe its not celiac as it can't improve.

But I decided to get tested as I do have symptoms even though my tiredness has improved a bit. I went to get some blood tests a month ago, the doctor said they came back really high showing celiac .......so he referred me to the hospital to have a gastroscopy (camera down the throat) which i was dreading, but i got told this is the only way they can tell for sure and i wont receive any help if i dont do it soooooooo i braved it and had it done and also had another blood test done and the hospital which came back fine ????......when i got my results from the gastrscopy he still doesn't know if i have it ???

They said my bowl is red or something there is no damage though so i asked the doctor have a got celiac? and he said its very likey but i cant say for sure .. WHAT?? I went through that camera thing and they still cant tell me.

Why can't they tell me? So now they want me to eat gluten free food for 6 months then go back and have a camera up my bum? then they said they will be able to tell me. Why would they tell me to go gluten free if everything is okay? and i no a few people who claim to be celiac but they have never had biopsy?

Im just really stressed as i dont have much support at home, my husband is earning the money and he doesnt want to waste money on gluten free food, and isnt very helpful with finding food i can eat! The only reason i had the gastroscopy done was so i would get help with buying some food (my sister gets this) but because they still cant diagnoised me i wont get any! If it hasnt damaged me then maybe it cant be celiac as i have had these symptoms a while now.

If a new i had it then i would just have to go gluten free, but i really dont want to go through the stress of it all for no reason. I have just left home moved to a different country, I really cannot cook, so finding meals is going to be hard!

Sorry I didnt keep that short at all did i :(

If you could help in anyway that would be great! I feel alone and confused!

Thanks! x

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Well, the redness in your intestinal tract would be inflammation, and inflammation is the start of the intestinal damage caused by celiac. You may not yet have enough damage for the villi to be flattened. You are starting to answer your own question over on the other thread about why people go gluten free without a positive diagnosis. Positive diagnosis is not easy to come by :unsure:

Tooth enamel problems are a characteristic celiac symptom. Psoriasis is an autoimmune disease - I know, I have it along with the arthropathy that often goes with it. You have fatigue. You had a positive celiac blood panel. Then you had another celiac blood panel which they told you was negative. Can you get copies of your blood test results from both your doctor and the hospital where your gastroscopy was done so that we can see what tests were run? And post the results here with the ranges so that we might help you interpret what is going on. Also a copy of report on the pill cam?

Di2011 Enthusiast
Di2011
Posted

And in the mean time start getting yourself believing that you ARE. At some point you may have to tell people that you ARE celiac/gluten intolerant even if the doc tells you otherwise.

BTW If you ask me the "gluten free is expensive" line is a myth. Buy bulk fresh foods and cook in bulk. Simple, healthy and you will feel good.

lucylooo Rookie
lucylooo
Posted
  • Author

I couldn't get copies of my test results, the doctors are so unhelpful and i wouldn't dare to ask them any more questions. I just wish i had support at home, my husband is making such a fuss over buying gluten free food as i don't know for sure if i have it........i don't know its all a bit stressful. It makes me angry so many people don't get the help they need! why cant it be easier to pin down :/ thanks anyway guys...sorry to keep moaning on.

x

mushroom Proficient
mushroom
Posted

I couldn't get copies of my test results, the doctors are so unhelpful and i wouldn't dare to ask them any more questions. I just wish i had support at home, my husband is making such a fuss over buying gluten free food as i don't know for sure if i have it........i don't know its all a bit stressful. It makes me angry so many people don't get the help they need! why cant it be easier to pin down :/ thanks anyway guys...sorry to keep moaning on.

x

The doctors are your servants, they work for you. Do not be intimidated by them. Besides, you can get the copies from the office staff. And if you live in the U.S. they are required to give them to you. You will probably have to sign a release authorization, that's all, and there may be a small charge depending on the office. From the hospital, probably. But it's so important for you to have this information for yourself.

Roda Rising Star
Roda
Posted

They won't be able to diagnose celiac from a colonoscopy. They do that with an upper scope which you had done. They either didn't do the biopsy correctly, didn't sample a damaged area(not visible to the naked eye), or you didn't have enough damage to show on the biopsy. False negatives are very common with this. Hopefully you can figure out where to go from here. In the end you will likely need to go gluten free.

auzzi Newbie
auzzi
Posted
my husband is making such a fuss over buying gluten free food

Ask him "if you had a medical problem, how would you feel if I kicked up a fuss about buying you anything you needed?" If he has a medical alternative, tell him you are open to suggestions ...

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

Celiac.com Sponsor (A8-M):


ScarlettsMommy Explorer
ScarlettsMommy
Posted

Well what I can tell you is, have a regular endoscopy and colonoscopy didnt show what the doctors needed to see for me. A normal endoscopy doesnt usually go all the way into the small bowel. I had to have a capsule study done where I swallowed a pill with a camera on it to actually see the small intestines. (Which is where they finally saw the celiac damage.) Then and only then did I have biopsies taken of the small bowel, and blood work which confirmed. Ask your dr about a capsule study.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,984
    • Most Online (within 30 mins)
      7,748
    henrygreen
    Newest Member
    henrygreen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...