"Highly sensitive"

Has anyone been diagnosed as a "highly (super) sensitve coeliac" ? where do they go from here?

[FionaGFG Administrator]

Tony - when you say 'diagnosed' what do you mean? I've seen a lot of terms flying around online ref latent/ silent and sensitive Coeliacs yet not heard many Drs use such terms or refer to 'super' sensitive Coeliacs.

[Hidden]

On Friday 18th March I saw Professor P Ciclitira's research doctor who was very knowledgeable, I was being tested for symptoms of RCD. She advised me that I was a "super sensitive coeliac" and can expected to be easily glutened because of the sensitivity. So I have the diagnosis.

[FionaGFG Administrator]

Where are they at in the Refractory Coeliac Disease testing Tony? Whilst it can be helpful to know they're looking further terms like 'super sensitive' seem pretty basic and don't always give patients much to go on ref how to control symptoms / improve do they?

[Hidden]

Following blood tests and an endoscopy I saw Professor Ciclitira's research doctor on 18th March who infomed me that I was not a Refractory Coeliac but a "Super sensitive coeliac".

Super sensitive meaning that the "Gluten Free diet" contains to much gluten to tolerate even at 20ppm.

[InVivo]

I've seen others in your position writing about their problems on social sites in the USA.

I personally think it means that you end up with overt symptoms, where other would just get silent ones, like inflammation, but that's just my opinion.

I think that 'Super-Sensitive coeliac' is really more a description than a diagnosis.

Did your Prof/Doc give you any further advice?

[Hidden]

Obviously Coeliac disease is the diagnosis and there must be a term for the severity of it, chronic is not used in this case or any other term.

If you look at what is becoming law in Europe on 1st January 2012 you can fit the "discription" to the condition ie, "Low Gluten" up to 100ppm of gluten = Coeliac. "Gluten Free" up to 20ppm of gluten = sensitive coeliac. "0ppm" of gluten = "super sensitive coeliac". Because "Gluten Free" has become the accepted norm for the treatment of Coeliac Disease those who can tolerate 200ppm at present will with habit continue with "gluten free" 20ppm foods and not bother with the "low gluten" 100ppm that will be safe for them and loose out.

So I do believe that the term "super sensitive coeliac" indicates the severity of the condition, my endoscopy result did show reduced folds d2,hiatus hernia, oesophagusitis and gastritis.

Other advice given was expect to be gluten easily due to sensitivity and hidden gluten

[Mia1057]

I have had this diagnosis here in Italy for a while and for me it means absolutely no gluten, no oats, staying away from most things that coeliac UK say are ok - no malt, no codex wheat, no processed foods, no 20ppm, just naturally occurring gf food which given I live here is not that bad. I seem to no longer have a problem with dairy which I am thankful for and both my blood tests and my villi have returned to normal. We can buy very few processed foods in any case as most supermarkets don't stock them, and we have loads of veg, rice, fruit, pulses, polenta, rice and corn pasta, meat, fish, seafood, cheese, milk , yogurts, eggs, chestnut flour, gram flour, rice flour, corn flour, buckwheat flour and grains. I also for some reason can't tolerate xanthan gum. Plus here most restaurants know about coeliac and can cater for me. I think it is more difficult in the UK where you have much more access to ready made meals.

[urbangirl in reply to Mia1057]

Mia I am sensitive to these things too but I have not had any coeliac diagnosis. It was only a year ago that I realized I had problems and the doctor did blood tests which were negative. Recently I discussed the reactions I was having to certain foods with my GP who said I am very sensitive and probably coeliac. There is no way I would want to have a test to confirm this as I would not want to eat stuff that made me ill. Besides I manage all this reasonably well and don't need any medical help. However, at times I think it would be good to know exactly what is wrong with me and I wonder if I had a confirmed diagnosis whether the medical profession would see some of the other problems I have with a different perspective. I often feel like I am really neurotic about my health. But ..... thank you for the info on Italian food and restaurants as I am hoping to visit next April!

[Mia1057 in reply to urbangirl]

I was diagnosed first by blood test and then by biopsy about 7 years ago. I suffer from 3 other autoimmune diseases as well and have had a very bad year. If you are coming to Italy let me know and I will send you pointers as I have been to most areas in the country.

[urbangirl in reply to Mia1057]

Thank you that would be so helpful. Although I am probably going to be on a tour but it would be good for advice on how to manage this and we will be able to go independent some of the time. I went to Albania this year and I had no problems at all. Will message you when the booking is confirmed

My blood tests last year ruled out coeliac. I don't know if things can change in a year as I cannot eat lots of different things and have always been sensitive to glucose syrup. In fact that was one of my first symptoms (along with reactions to bread and pastry) that I had something wrong. Now even the slightest indication seems to set me off, although I ate some gluten the other day (I let my husband do the checking! Big mistake) and nothing happened.