Undiagnosed celiac but have my blood test next week

[TheSootyShow]

Hi, I'm new to all of this but have been having symptoms of celiac. I am in my early twenties. My GP referred me for a blood test. My biggest symptoms are stomach pain, severe itching/ eczema, headaches, extreme fatigue and muscle ache (some days it's hard to even move),  feeling just generally depressed, mood swings,  tingling in hands and feet, mouth ulcers, brain fog etc. I have also always been tiny, look alot younger and hit puberty very late. 

 

I guess I'm just feeling a bit down, because I've been waiting so long for this test. I research celiac all day everyday. I obviously don't want to be celiac, but at the same time I really want an answer to all my miserable symptoms. If it's not celiac then I'm back to the drawing board and I'll still feel rubbish.

 

Any advice/ words of wisdom would be much appreciated. Thank you! 

[trents]

When is your blood test? Be sure not to attempt cutting back on gluten until all testing is over, including the endoscopy/biopsy that your physician may order in addition to the blood test. Keep us posted as to the blood test results. There is also another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many the same symptoms as celiac disease and is 10x more common. But there is no test for NCGS. Celiac disease must first be ruled out.

Edited October 5, 2023 by trents

[TheSootyShow]

Hi yes, my test is next week I'll make sure to keep eating gluten. I assume I'm eating enough gluten? I eat exactly how I would prior to symptoms (apart from maybe the odd gluten free cereal bar or something) but I'd say I eat atleast two meals containing gluten a day. 

 

I live in a home where being celiac would be easier to explain and therefore more accepted than if I was "just" gluten intolerant. So I am a bit worried about that. Although from the research I've done I've got quite alot of the celiac symptoms so I do think it's quite likely. 

[trents]

1 minute ago, TheSootyShow said:

Hi yes, my test is next week I'll make sure to keep eating gluten. I assume I'm eating enough gluten? I eat exactly how I would prior to symptoms (apart from maybe the odd gluten free cereal bar or something) but I'd say I eat atleast two meals containing gluten a day. 

 

I live in a home where being celiac would be easier to explain and therefore more accepted than if I was "just" gluten intolerant. So I am a bit worried about that. Although from the research I've done I've got quite alot of the celiac symptoms so I do think it's quite likely. 

Two pieces of wheat toast daily (or the gluten eqivalent) is considered enough. 

By the way, your terminology needs adjusting. "Gluten intolerant" generally is used to speak of celiac disease. "Gluten sensitive" is normally used to speak of NCGS.

[TheSootyShow]

Thank you for correcting me 😊 I'm just feeling a bit miserable about it all at the moment and just want to start feeling better asap. 

[currydmc]

7 hours ago, TheSootyShow said:

Hi, I'm new to all of this but have been having symptoms of celiac. I am in my early twenties. My GP referred me for a blood test. My biggest symptoms are stomach pain, severe itching/ eczema, headaches, extreme fatigue and muscle ache (some days it's hard to even move),  feeling just generally depressed, mood swings,  tingling in hands and feet, mouth ulcers, brain fog etc. I have also always been tiny, look alot younger and hit puberty very late. 

 

I guess I'm just feeling a bit down, because I've been waiting so long for this test. I research celiac all day everyday. I obviously don't want to be celiac, but at the same time I really want an answer to all my miserable symptoms. If it's not celiac then I'm back to the drawing board and I'll still feel rubbish.

 

Any advice/ words of wisdom would be much appreciated. Thank you! 

The late puberty and small stature, 'young looking' could be describing me - I have a suspicion celiac was behind it. Most of my family were either average height or 6ft+ but I was the 2nd smallest kid in my year until about 16-17years. Mouth ulcers and dry mouth were also present since late teens.

 

Hope you get your test soon, and discover a way to stop symptoms whether celiac or a different problem. Good that they are examining you this early on. In the UK the average age of diagnosis is 40-60! That's a lot of grief.