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BornToRock

Celiacs Misdiagnosis

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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

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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


"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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