Should I get re-tested?

[NaomiKR]

Hi, 

I'm a 20 year old female and 5'0". I started noticing serious digestive problems when eating gluten in my later teenage years (16+) but had slight problems with ingesting wheatabix cereal as a young child. My symptoms include severe stomach cramps (6-9 hours after ingesting the gluten), bloating and constipation. Usually only a high gluten source like bread would cause these symptoms. It onset didn't come as a shock to me because my father and his brother have both had an intolerance to gluten since early adulthood, and neither have ever got tested for celiac's, stupid I know, and both continue to eat gluten, stubbornly. I had a blood test done with the NHS for celiac's which came back negative, and the doctors said I may just have "non-celiac gluten sensitivity". However I was warned that the test isn't always accurate, especially if the patient is already on a gluten free diet when the test is taken, which I was. 

It bothers me that little is known about NCGS and there are even people who believe it doesn't exist.. There are no real tests for it and the NHS diagnose it by making you keep an extensive food diary. I haven't suffered any symptoms (apart from occasional symptoms when it's accidentally ingested) since being on my gluten-free diet, it's been a year since I started it now. I've noticed I'm even more sensitive to it since I've been off it. 

I also have GERD (acid reflux) constantly every day and I'm on heavy medication for it. I've heard it can sometimes be related to Celiac's, and I'm worried my Celiac test result was inaccurate. 

Any advice? Anyone have similar symptoms to me? I need answers!! 

Thanks for reading, I'm sorry it's quite lengthy  

[cyclinglady]

All celiac testing (even intestinal biopsies) require you to be on a full gluten diet.  It can also develop at any time in your life.  You can either do a gluten challenge (12 weeks) and get the blood test again or remain gluten free for life.  It sounds like you doubt your current diagnosis and that might make it difficult to adhere to the gluten free diet.  

 

[Jmg]

10 hours ago, NaomiKR said:

Hi, 

I'm a 20 year old female and 5'0". I started noticing serious digestive problems when eating gluten in my later teenage years (16+) but had slight problems with ingesting wheatabix cereal as a young child. My symptoms include severe stomach cramps (6-9 hours after ingesting the gluten), bloating and constipation. Usually only a high gluten source like bread would cause these symptoms. It onset didn't come as a shock to me because my father and his brother have both had an intolerance to gluten since early adulthood, and neither have ever got tested for celiac's, stupid I know, and both continue to eat gluten, stubbornly. I had a blood test done with the NHS for celiac's which came back negative, and the doctors said I may just have "non-celiac gluten sensitivity". However I was warned that the test isn't always accurate, especially if the patient is already on a gluten free diet when the test is taken, which I was. 

It bothers me that little is known about NCGS and there are even people who believe it doesn't exist.. There are no real tests for it and the NHS diagnose it by making you keep an extensive food diary. I haven't suffered any symptoms (apart from occasional symptoms when it's accidentally ingested) since being on my gluten-free diet, it's been a year since I started it now. I've noticed I'm even more sensitive to it since I've been off it. 

 

Any advice? Anyone have similar symptoms to me? I need answers!! 

Thanks for reading, I'm sorry it's quite lengthy  

Hi Naomi and welcome

I've had a somewhat similar experience. I also tested negative on the NHS blood test after having been mostly gluten free. I was referred however based on symptoms and did a 6 week gluten challenge followed by an endoscopy which was also negative. However during the challenge all my symptoms returned, so I was advised to be gluten free for life regardless.

I know NCGS is a bit of a 'dustbin diagnosis' and sometimes I wonder if a more comprehensive blood test than the NHS provides or a longer challenge period would've given a different result. Then I think back to my challenge diary and realise I don't want to go through that again and can live gluten free without the diagnosis, 

I collected some info on NCGS here:

I recommend the Umberto Volta interview especially. He's a world expert on celiac, helped to develop the current blood tests and in no doubt about NCGS existence. There's also some good news there about a potential test, which may be on the way soon (ish). However any testing would require a gluten challenge and you've already found out how your responses change once youve been off for awhile. You'd need to decide if you were up for a potentially unpleasant few weeks.

I think like me you definitely have an issue with gluten. I decided I had enough proof to live my life as if the coeliac diagnosis was positive and I don't mind self identifying as such if in a restaurant just to ensure my food is safe. 

So you really need to decide if you're happy to go on as is or want further testing?

Either way, best of luck!

Matt