Don’t think I can ignore this anymore

[Unsure123]

So my mom has been diagnosed with celiac disease for around 7 years now. I’m 32, and I’m pretty sure I’ve got this. 
I’ve lost over 3 stone in weight (I’ve had kids, put it down to stress and baby weight coming off) I’ve never really had problems down there but feels like I’ve got thrush all the time. The skin between my fingers has cracked. Some days I feel like I’ve got brain fog 🤷🏻‍♀️ Tired all the time. Doctors ran blood tests but not for celiac. Everything else is clear. My surgery isn’t the best, so I’m wondering if anyone has had success with home tests brought online please. Any advice appreciated, and if this doesn’t sound like celiac please say as well xx

[trents]

Welcome to the forum, Unsure123!

Your symptoms indicate possible celiac disease or NCGS (Non Celiac Gluten Sensitivity) and there is family history of a gluten disorder. You said, "My surgery isn't the best". Did you mean to type "surgeon" instead of "surgery"? Would you clarify what is meant by this? Did you have a C-section?

I have had no personal experience with the home celiac disease test kits. The most popular one is put out by Imaware and I think it is reliable. Is there any particular reason you aren't seeking celiac disease testing through your national health care system physician? From your use of "stones" for body weight I assume you are in the UK and I'm aware that the system there is stressed out right now such that it is difficult to get non-emergent care appointments in a timely fashion.

[Unsure123]

I’m sorry I should have clarified, when I say my surgery I mean my doctors general practice. Would be waiting weeks to get an appointment then not sure of what tests they would need to do to diagnose me. If it’s a case of just going to a pharmacy and buying a home test kit then that would be easier but unsure if they are reliable 

[trents]

A pharmacy may be able to order a home test kit for you but I would be surprised if they had them in stock.

Here is one I know is popular but not sure what postage/shipping costs would be where you live: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Here is a primer for tests that can be run to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Most doctors in the UK only order the tTG-IGA test. There may be limitations on what they are permitted to order because of government guidelines for practice. Ideally, I would ask for:

1. Total serum IGA count

2. tTG-IGA

3. Deamidated gliadin peptide (DGP IgA and IgG)

There is also the option of trialing a gluten free diet without any testing beforehand. If your symptoms improve, you would conclude you either have celaic disease or NCGS. There is no testing for NCGS. Celiac disease must first be ruled out. The two gluten disorders share many of the same symptoms and the antidote is the same, namely, strict life-ling avoidance of gluten. NCGS is 10x more common than celiac disease.

However, be aware that if you trial a gluten free diet, you would need to go back to eating regular amounts of gluten for two months before any testing for celiac disease would be valid.

 

[cristiana]

Hello Unsure

I'm a British coeliac.  Great advice above from Trents.

Just to say in your shoes I'd try to still get tested through the surgery if I were you.  There are quite a few benefits of having an official NHS diagnosis in the UK:  annual blood tests to check your diet is on track and checking for any additional health issues; DEXA bone scans to check for bone density, advice from a nutritionist etc.

If your GP surgery is under a lot of pressure you may need to wait to see them again but you can say when you make your appointment that you want to be sure you are not suffering from coeliac disease because of family history.  You can point out that this is recommended as best practice on the NHS website (see link)

https://www.nhs.uk/conditions/coeliac-disease/diagnosis/#:~:text=Testing is also recommended if,intestine%2C to confirm the diagnosis

I do hope you manage to get an appointment.  If the tests proceed, do make sure you are continuing to consume enough gluten beforehand.  This is considered to be two slices of normal glutenous bread or the equivalent for 6 weeks or so before the blood test.

Cristiana

Edited November 13, 2022 by cristiana