Is diagnosis that important?

[Coffee lover]

I went gluten-free about ten years ago and was amazed by how my body improved almost immediately. There were things that had become so normal for me I didn't realise they were "symptoms" of anything at all until they disappeared including tingly/numb fingers and toes, fatigue, bouts of anaemia, elbow/groin/knee/hand rashes, constant coldsores, bloatedness, pale stools/mucus and a general unhealthy pallor which I assumed was smoking related (I've also long given up smoking by the way, just in case anyone's tempted to have a wee prod at that  ). They're mostly cumulative symptoms, I seldom had an immediate wild gastrointestinal response to anything at all (except dairy), and pretty much all of them disappeared upon ditching gluten.  

Upon this miraculous discovery I went to my doctor and told him. His exact words were "So you're telling me you've stopped eating a particular food and now you feel much better. What do you imagine I'll tell you to do?" Implying that I should just keep on avoiding that food and not waste his time. I felt very very silly. So I just continued with gluten-free diet and all was fine.  After about two years I wondered if I'd best check if it really is celiac disease, having become veeeery familiar with the the inconvenience (I hate the idea of being the awkward dinner guest or companion for no real medically substantiated reason.)  So I had a blood test done and a biopsy done and both came back negative, although admittedly I had only eaten gluten for about two weeks before biopsy. So again I felt silly and stopped mentioning it, generally being gluten-free but not creating a fuss with sauces in restaurants or at friends houses. And maybe the odd beer at a party when the wine's run out at 1 am...  And generally my health has been good, but I guess on hindsight never eating enough gluten to build up any cumulative reaction. 

 

And now again I find myself deep in the throes of my original symptoms (toilet stuff, mouth and cheeks and hand covered in coldsores, arm pit rashes, tiredness) and after a couple of bewildered weeks discover that oats are the most likely culprit. I've been going wild on porridge as part of a new regime of physical exercise and had no idea that this was a potential allergen. And it again brings me to the celiac door more convinced than ever. 

 

My question is, what is the use of me getting a diagnosis given that my symptoms are so textbook? I definitely cannot be bothered eating bread for 12 weeks, life's too short to feel terrible. 

 

Ugh, sorry this is so boring. I really want to file diet so much lower on my list of things to think about which I'm sure everyone here gets as much if not more than I!

 

 

[GFinDC]

You can get a diagnosis or not.  It doesn't change a whole lot except in consideration of children or relatives.   Since celiac is associated with certain genes, anyone with those genes is a possible celiac.  So children or relatives with the genes might want to get tested themselves every couple of years.

I don't know what your cold sores are like, but there is skin rash associated with celiac disease called dermatitis herpetiformis (DH).  DH causes fluid filled itchy bumps on the skin, usually in a symetrical pattern on both sides of the body.  The DH testing includes taking a small skin biopsy from next to a lesion.  Also, people,with DH sometimes don't show up positive on the regular blood tests as easily.

Please check the DH section of the forum for more info, including pictures of the condition.

 

[kareng]

  On 4/8/2018 at 2:53 PM, Coffee lover said:

I went gluten-free about ten years ago and was amazed by how my body improved almost immediately. There were things that had become so normal for me I didn't realise they were "symptoms" of anything at all until they disappeared including tingly/numb fingers and toes, fatigue, bouts of anaemia, elbow/groin/knee/hand rashes, constant coldsores, bloatedness, pale stools/mucus and a general unhealthy pallor which I assumed was smoking related (I've also long given up smoking by the way, just in case anyone's tempted to have a wee prod at that  ). They're mostly cumulative symptoms, I seldom had an immediate wild gastrointestinal response to anything at all (except dairy), and pretty much all of them disappeared upon ditching gluten.  

Upon this miraculous discovery I went to my doctor and told him. His exact words were "So you're telling me you've stopped eating a particular food and now you feel much better. What do you imagine I'll tell you to do?" Implying that I should just keep on avoiding that food and not waste his time. I felt very very silly. So I just continued with gluten-free diet and all was fine.  After about two years I wondered if I'd best check if it really is celiac disease, having become veeeery familiar with the the inconvenience (I hate the idea of being the awkward dinner guest or companion for no real medically substantiated reason.)  So I had a blood test done and a biopsy done and both came back negative, although admittedly I had only eaten gluten for about two weeks before biopsy. So again I felt silly and stopped mentioning it, generally being gluten-free but not creating a fuss with sauces in restaurants or at friends houses. And maybe the odd beer at a party when the wine's run out at 1 am...  And generally my health has been good, but I guess on hindsight never eating enough gluten to build up any cumulative reaction. 

 

And now again I find myself deep in the throes of my original symptoms (toilet stuff, mouth and cheeks and hand covered in coldsores, arm pit rashes, tiredness) and after a couple of bewildered weeks discover that oats are the most likely culprit. I've been going wild on porridge as part of a new regime of physical exercise and had no idea that this was a potential allergen. And it again brings me to the celiac door more convinced than ever. 

 

My question is, what is the use of me getting a diagnosis given that my symptoms are so textbook? I definitely cannot be bothered eating bread for 12 weeks, life's too short to feel terrible. 

 

Ugh, sorry this is so boring. I really want to file diet so much lower on my list of things to think about which I'm sure everyone here gets as much if not more than I!

 

 

Expand Quote  

Regular oats can have some very high level of gluten in them.  A Celiac would need to eat gluten-free oats.

 

they are working on tests that require little or no gluten consumption, so you could wait a few years for that.  Reasons to be diagnosed for adults -

so your kid's symptoms will be taken seriously

so medical care, like a nursing home or hospital, might try to feed you gluten-free.  It's stil unlikely they will

if you go to jail, a few prisons will try to feed you gluten-free, most don't 

basically, if you are doing well gluten-free and will stay that way, don't worry about it.  Wait for the new tests.

[cyclinglady]

I agree with the others.  

Here is my story.....

My hubby went Gluten Free some 17 years ago per the poor advice of his GP and my allergist (they should have ordered a celiac screening).  The gluten-free diet worked.  Then 12 years later I went in for a routine colonoscopy (cancer screening, yeah...I am over 50), and the GI told me that he was going to test me for celiac disease due to my anemia (no GI issues).  I was scoped from both ends and the rest is history.  

My hubby will say that I have had way more support from family, friends and medical.  Yes, medical!  However, like you, he refused to do a gluten challenge.  We do need him to be able to function as we like paying our bills!  My diagnosis has made it easy for our daughter to get regular screenings.  It also made it easy for me to get a repeat endoscopy which found another autoimmune disease, but also found that my small intestine has healed.  

So, the choice is yours to make.  Only you and your doctors know what is best for you.  

[5143Betty]

I’m in a very similar situation. My doctor made me feel stupid and said “if you feel better, don’t eat it” and so I never pushed for testing. It’s been 2 years now, and I’d like to be tested because I’d like to know if I’m damaging my body with cross contamination or a hidden gluten source.   It’s a personal decision, but for me, I’d rather the diagnosis. Good luck my friend