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

Celiacs Misdiagnosis

BornToRock

Recommended Posts

BornToRock Newbie
BornToRock
Posted

Hello all,

Firstly thankyou for taking the time to view my post.

I was directed to this site because all of the symptoms I have link me to Celiacs disease:

I have been seriously ill since 2008 with Idiopathic Portal Hypertension, varices in the stomach which have burst and I have vomited blood as a complication, I have portal hypertensive gastritis and was initially admitted to hospital with severe malnutrition and anaemia, to the extent where my Ferretin levels were 5 out of 200 and my blood count below 50. I also have an enlarged spleen, very low platlets (as low as 16) and Cirrhosis of the liver.

I do not drink, have never taken illegal substances and am only 24 years of age. I was diagnosed with portal hypertension at 21. Portal Hypertension normally something in drinkers at an older age, but even if I was a drinker the doctors said 21 is too young for the effects to be there.

I have had nine endoscopies, a colonoscopy, a bone marrow biopsy and three liver biopsies and now for three years the results have been vague, unable to detect where the portal hypertension is coming from.

My symptoms over the course of three years of illness have been:

- Yellow pallor

- Issues with bowel movement and pain

- very low iron levels

- Hives or rashes

- bruising easily and bleeding a lot

- Varices (veins) in my stomach

- Hypersplenism

- malnutrition

- Toenails dropping off

- Teeth decaying

- Hair losing sheen and becoming straw-like

- bloating

- stomach filling with blood

- Extreme depression and mood swings

- Scarring of the liver which was not present in 2008 but by 2010 was evident.

I was directed to celiacs by my first doctor via a blood test who told me "It has a bit of a reading towards celiacs" but then he dismissed it. My second blood test a few years later read Positive for Celiacs disease but my biopsy came back negative - I had been gluten free for a month before the biopsy. I have heard starting the gluten free diet before the biopsy can hinder your results.

I apologize for the extreme length of this post, and I would like to ask if anyone has experienced similar and would it be Celiacs?

I must also note I am of half meditteranean descent, which I have heard is an indicator for Celiacs.

I am from Australia, and in our country the awareness for Celiacs does not seem to be as present as it is in America. Hopefully there are some American gentleman and ladies who have similar experiences who might be able to answer my question.

Thankyou once again for your time

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

Celiac.com Sponsor (A8-M):


shopgirl Contributor
shopgirl
Posted

You're absolutely right that being gluten-free can give you a false negative on the biopsy. It would be up to you whether or not you challenge gluten

ravenwoodglass Mentor
ravenwoodglass
Posted

With all the health issues you are having, and considering you have had a positive blood test I would go gluten free strictly. The biopsies have a rather high rate of false negatives. The blood tests have a high rate of false negatives also but your test was positive. Some doctors are now skipping the biopsy when the person has a positive blood test.

I hope you get some resolution of the issues. And I hope it occurs relatively quickly for you. Make sure you read as much as you can here and go with whole unprocessed food as much as you can. Do be aware of cross contamination issues and get a new dedicated toaster and replace any scratched pans you may have. You should also get a new strainer for your gluten free pastas and to rinse your veggies.

We are here to help you in any way we can.

BornToRock Newbie
BornToRock
Posted
  • Author

You're absolutely right that being gluten-free can give you a false negative on the biopsy. It would be up to you whether or not you challenge gluten

BornToRock Newbie
BornToRock
Posted
  • Author

With all the health issues you are having, and considering you have had a positive blood test I would go gluten free strictly. The biopsies have a rather high rate of false negatives. The blood tests have a high rate of false negatives also but your test was positive. Some doctors are now skipping the biopsy when the person has a positive blood test.

I hope you get some resolution of the issues. And I hope it occurs relatively quickly for you. Make sure you read as much as you can here and go with whole unprocessed food as much as you can. Do be aware of cross contamination issues and get a new dedicated toaster and replace any scratched pans you may have. You should also get a new strainer for your gluten free pastas and to rinse your veggies.

We are here to help you in any way we can.

Hello,

Thankyou very much for your reply. I am enjoying the gluten free diet and am very much wanting to stay on it as you suggested.

I have gone off salt as well and I am trying to watch where traces of other bread or gluten based products have been prepared in our house.

I think getting my own toaster and strainer is a good idea - we have been sharing toasters at my house and there are issues with cross contamination, even if we use our grill we have to replace the foil we place bread on.

How about you? How do you find the diets and way of life being gluten free?

Thankyou once again for all your assistance and I am looking forward to talking to you again about Celiac diets and issues.

All the best,

Nicholas

ravenwoodglass Mentor
ravenwoodglass
Posted

Hello,

How about you? How do you find the diets and way of life being gluten free?

All the best,

Nicholas

Simply put the diet saved my life, literally. It did take some getting used to at first but it was so worth it. I hope you are feeling great soon. Don't get discouraged if you have some ups and downs at first and do be as careful about cross contamination as you possibly can. You want those antibodies to go away and it takes surprising little to keep them active.

Archived

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

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


  • Member Statistics

    • Total Members
      132,075
    • Most Online (within 30 mins)
      7,748
    Amy1620
    Newest Member
    Amy1620
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • 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.