What is wrong here

[NoGoodDeed]

My sister feels ill all of the time. Symptoms:

Joint pain/weakness
Tiredness and fatigue
Crippling headaches
Mild depression and anxiety
Very large appetite, eating lots but losing weight

She has coeliac disease (diagnosed 4 years ago) and follows a strict gluten free diet. Has been tested for thyroid issues.

Anyone have any ideas?

Could be anything or multiple things.

Can you get a printout of her bloods and post them here so some members who are clued up on interpreting them can have a look.

Doctors will often tell you your results are normal when they're actually not and also won't mention they haven't tested everything. Thyroid conditions and vitamin / mineral deficiencies are grossly underdiagnosed.

Make sure all of the following have been tested in addition to the coeliac test and routine bloods:

• Vitamin D
• Vitamin B12
• Folate
• Ferritin

Without knowing the levels and what's been tested it's impossible to say so try to get the results. She's legally entitled to them.

Cancer? Losing weight despite eating lots would cause me concern but there are loads of harmless things it could be too

Thanks for the replies so far, food for thought. I forgot to mention that we also have a history of ME in the family.

When did she last have an endoscopy? Could it be that she's still eating gluten unknowingly?

I'm not sure when she last had an endoscopy but I think we can rule out her still eating gluten unknowingly - she lives in a completely gluten free household and when she does accidentally eat gluten (last time about 18 months ago) it makes itself extremely known!

Fibromyalgia?

But really she needs to see a m ducal professional.

Fybromyalgia is being investigated. She is in and out of the docs constantly and nothing seems to be moving forward very fast to be honest

There is a condition called refractory coeliac, which happens when the gut does not heal, despite following a strict GF diet.

It is also possible to maintain a low level of glutening, and respond drastically at a high level. I've just recently seen this, as my coeliac FIL was on the verge of being diagnosed with refractory coeliac, when I spotted that the Marmite he eats every day contains wheat and barley. He had been told, when diagnosed, that Marmite was OK, and had not noticed when the label changed 3-4y ago.

@GazeboLantern thanks that it really helpful info. I've had a look online and it would definitely fit even though she is a lot, lot younger than the average age of 50. I've passed along the info