Do These Symptoms/endoscopy Results Sound Like Celiac?

[PJD]

Not looking to self diagnose, but after years of gastrinal problems and I feel I need to put some legwork in - my Dr's have been pretty unhelpful... and before they start randomly chopping/sectioning bits out of me...   

So I would really appreciate any input as to whether what I describe could potentially be celiac disease..

Symptoms include

 

* Abdominal pain, just right of tummy button

* Years of nausea / vomiting, becoming more frequent
* Those episodes accompanied by over-salivation, over-sensitivity to smell/sight
* Fatty liver
* I am overweight 45 year old with pear shape (vegetarian for 24 years)

* I had IBS-like symptoms also initially eg. gas/diahorrea/bloating
 

First started as a dull pain around 2008 now in constant pain/discomfort

Switching medications from Zopiclone has reduced frequency of nausea

Recently had a gastroscopy that showed my stomach, hiatus and oesophagus look normal - but the duodenum was inflamed / diffuse redness (technical term was 'erthymia' or similar) and "moderate erosions". My GP suggests this is quite a severe outcome based on her results history. 

Four biopsies were taken - not sure if including celiac - I'm awaiting results.

 

I'm in the UK

 

[ravenwoodglass]

Has your doctor done a celiac panel on you? If not you could call the office and request that they do those blood tests. Do not go gluten free until that is done as it will cause a false negative. 

Welcome to the board and I hope you get some answers and relief soon. 

[nvsmom]

Good luck with the results, and ditto ravenwoodglass, its a good idea to run the celiac panel before going gluten-free.  get ttG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and possibly the older and less reliable AGA IgA and AGA IgG.

 

WElcome to the board.  Let us know how the test results turned out.

[PJD]

Thanks you two - I'm seeing my GP tomorrow I will ask about the celiac panel. I know I've had some celiac bloods done but I think it was just a subset of the list you cited NVSMOM. How reliable are the results though ?? I hear false-positives and false-negatives are not uncommon??

I've been in intermittent pain since the gastroscopy - so I'm afraid I've already been steering away from gluten products in an attempt to alleviate symptoms... though not sure how effectively - as I cannot afford to avoid processed products and in the UK they don't have to be labelled, so something you wouldn't ordinarily expect to contain gluten in may well do. On the other hand, I once read something to the effect that the "gold test" is the gluten exclusion from the diet.

I presume I'm suffering due to the biopsies taken, 4 were taken in the duodenum - which I understand is the minimum sample size for a celiac test.. so I hope they have tested for the... erm.. antibodies? I believe the test has to be done twice for confirmation, I doubt I'd consent to having the procedure done again any time soon.

[PJD]

Just as addendum, having read more closely your sig ravenwoodglass - boy does some of this look familiar!

Like I say I don't have a clear diagnosis atm (aside from duodenitis)...

 

Quote :

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 

 

I believe I've been misdiagnosed since 2008..
IBS, panic attacks, lupus, kidney damage, prediabetes.. and others I forget.
The worst is IBS..GPs throw this term around a lot.
There are stories I could tell

[ravenwoodglass]

Just as addendum, having read more closely your sig ravenwoodglass - boy does some of this look familiar!

Like I say I don't have a clear diagnosis atm (aside from duodenitis)...

 

Quote :

celiac 49 years - Misdiagnosed for 45

Blood tested and repeatedly negative

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 

 

I believe I've been misdiagnosed since 2008..

IBS, panic attacks, lupus, kidney damage, prediabetes.. and others I forget.

The worst is IBS..GPs throw this term around a lot.

There are stories I could tell

Yea I have more than a few stories myself. Don't lose hope you may recover far more than you thought possible. It can be slow process for some of us. I saw quick improvement with migraines and IBS symptoms. You can speed along the healing by eating as little processed food as possible. Do not go gluten free until all your testing is done. Living in the UK I think you can get a 'script' for gluten free breads and such so if you can get diagnosed rather than just going gluten free it might be a good thing. 

[nvsmom]

Thanks you two - I'm seeing my GP tomorrow I will ask about the celiac panel. I know I've had some celiac bloods done but I think it was just a subset of the list you cited NVSMOM. How reliable are the results though ?? I hear false-positives and false-negatives are not uncommon??

 

False positives are very rare.  I think it gets as high as 5% for the tTG IgA test but it would be a weak (false) positive and is probably caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection... The positive is caused by something in all cases but 95% of the time it is caused by celiac disease.

 

False negatives are much more common.  The biopsy can have a false positive rate as high as 20%, especially if fewer than 6 samples were taken.  The blood tests can have a false negative rate as high as 25% based on the test's sensitivity - that's why it is a good idea to get as many tests done as possible.

This report (page 12) shows the sensitivities of most of the tests, as well as how specific the results are to celiac disease (% of positives caused by celiac disease): Open Original Shared Link

 

Hang in there!