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Symptoms but doctor wont run further tests?

Millymo21

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Millymo21 Newbie
Millymo21
Posted

Hi all, I'm new to the forum so I'm really hoping someone will be able to help. 

I've been having digestive issues for the past 2 years and have lost nearly 4 stone in weight. All of my symptoms suggest celiac disease, I not only have digestive issues, bloating ect but my upper arms are covered in a rash, obviously the weight loss and then I'm also constantly anaemia and I now have low vitamin D levels along with depresssion, anxiety, constant headaches, tiredness, stomach pain ect. I know these symptoms could suggest a number of issues but I have noticed once I've stopped eating gluten products my symptoms seem to at least lessen. I've asked the doctor what he suggests and he does think it is likely but i'm struggling to be put forward for further testing. I'va had countless generic blood tests but obviously this isn't enough to diagnose if I have it or not. I'm honestly losing my mind with not only feeling so ill but also not knowing what exactly is wrong with me. Should I just try a gluten free diet and see if my symptoms continue to improve or what? 

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kareng Grand Master
kareng
Posted
49 minutes ago, Millymo21 said:

Hi all, I'm new to the forum so I'm really hoping someone will be able to help. 

I've been having digestive issues for the past 2 years and have lost nearly 4 stone in weight. All of my symptoms suggest celiac disease, I not only have digestive issues, bloating ect but my upper arms are covered in a rash, obviously the weight loss and then I'm also constantly anaemia and I now have low vitamin D levels along with depresssion, anxiety, constant headaches, tiredness, stomach pain ect. I know these symptoms could suggest a number of issues but I have noticed once I've stopped eating gluten products my symptoms seem to at least lessen. I've asked the doctor what he suggests and he does think it is likely but i'm struggling to be put forward for further testing. I'va had countless generic blood tests but obviously this isn't enough to diagnose if I have it or not. I'm honestly losing my mind with not only feeling so ill but also not knowing what exactly is wrong with me. Should I just try a gluten free diet and see if my symptoms continue to improve or what? 

I don't understand - your doctor thinks you may have Celiac but won't even do a blood test for it?  Is it because you are eating gluten-free?  You need to be eating gluten to get an accurate test.  If you are eating gluten, then you either need to insist or get a new doctor

GFinDC Veteran
GFinDC
Posted

Hi,

The celiac disease testing only works if you have been consuming gluten.  So if you stop eating gluten now you may never get an answer for sure.  Some people can live without a firm diagnosis and stick to the gluten-free diet.  Others want the official diagnosis.  It's a personal decision.

4 stones sounds like a lot of weight.  If your health is failing and you can't get a doctor to test you for celiac disease, then I say go for the gluten-free diet.  But plan on sticking with the gluten-free diet for 6 months minimum to know if it is a a help.  Many people don't test positive on the standard celiac disease tests but feel better not eating gluten.

Lorjenn22 Apprentice
Lorjenn22
Posted

you should really go to a gi specialist! me n my dad both hv celiacs! i hv very similar symptoms w vitamin s and i was seeing a bloid doc for years! she did all kinds test but didn’t think was celiacs until my dad was diagnosed and then they retested me! i really think it could be this for you and your family doc just doesnt know enough about it! my blood doc and my cardiologist both disputed it for me and they were wrong!! goodluck!

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