How do you measure whether a coeliac is "Super sensitive" ?

[pretender]

I hear this term used a lot on coeliac sites where do you go and what clinical tests are carried out for anyone to say they are "Super sensitive".

[ThatPandaGirl]

I have asked this question previously as in some groups there seems to be almost a competition and some elitist attitudes. However I judge myself to be sensitive based solely on the strength and severity of my reactions.

They can grade the damage when doing the diagnostic biopsy, and tell you how high your blood results are but , to my mind, these are more indicative of length of time undiagnosed and amount of gluten ingested.

[Lynxcat]

I found this on a post by a super sensitive coeliac and thought that it may be of interest to you:

"In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus, also protects the most number of individuals with CD from experiencing any detrimental health effects from extended to long-term exposure to gluten."

There are other little gems on the site - so, Pretender and all others who may want to read on - here is the link:

buffalo-to-go.com/tag/super...

[Lynxcat in reply to Lynxcat]

I should have added the whole piece which it alleged was what the FDA had quoted so here it is:

"In the FDA’s Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, it states on page 46

'In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus, also protects the most number of individuals with CD from experiencing any detrimental health effects from extended to long-term exposure to gluten.'

I read that and thought: finally! Things are looking up. Maybe we’ll have a proposal that will be safe for all of us! And then I read the final conclusion: 20 ppm is the best gluten limit for a label of gluten free. Because it’s more easily tested, and more easily accommodated by business, as best I can tell. 19 ppm is a rather huge difference, in the realm of sensitive celiacs, so they’ll have to pardon me if I don’t accept that they chose wisely. I’d rather have a ‘low gluten’ label, if they are choosing 20 ppm, so that people like myself can at least be aware of the potential risks. And considering that 1/3 of celiacs may be sensitive like I am, because they are not getting better on this diet, that’s a lot of people this could affect detrimentally."

I do not know where the above gets their information from but wonder whether it may be the same over here in Britain. Could around a third of coeliacs here too be having problems with their health and not feeling better or getting better on a gluten free diet?

It is certainly food for thought, don't you think. Along with the fact that it is now believed that there are currently at the very least 550,000 undiagnosed coeliacs within Great Britain.

[pretender]

The person responsible for the 20ppm in the EU legislation does have a disclaimer that these laws do not take into account an individuals level of sensitivity.

The way I have believed it is that the are the:

Type 3 Low gluten Coeliac's 100ppm and above (used to be 200ppm with only few non-tolerants)

Type 2 Gluten free's up to 20ppm

Type 1 Complete avoidance

The scientific detection of gluten in finished products is how low? 10ppm

The majority of diagnosed coelic's are type 2 so there is the market.

We know that gluten damages the gut and once excluded and the gut heals has it ever been trialled if a coeliac could return to normal foods? if they could the Gluten free market would collapse.

What is being done for the Type 1 coeliac's?

[Mazz]

Hello Pretender, If you have been diagnosed, the best person to help you sort this out is your dietician, if you have'nt, I suggest you make an appointment with him/her, then you can sit down together and discuss the foods you are eating, if you have not been diagnosed, go to your GP, to set the ball rolling

[pretender in reply to Mazz]

Hi Mazz, Yes diagnosed, rediagnosed and a confirmation diagnosis. Nothing left to look for. Had any of those diagnosing me had that much knowledge of the condition then they would have suggested an allergy as an underlying condition, the same applies to dieticians who were of little help to me. Professor's, Consultants, GP and other Healthcare Professionals using their clinical judgement did what they had to and that was that.

[suzi_lewis]

Hi. I'm a 'super sensitive' coeliac, and this is not self diagnosed!! What it means is that after a year on a normal GF diet my follow up biopsy showed no improvement in the condition of my villi/gut, even though my symptoms had all but disappeared - the consultant told me this was irrelevant.

For a further 8 months I have been put on this super sensitive diet which means I can't eat anything that isn't naturally GF, anything that has a level of codex wheat starch or barley malt extract, so for example I've had to cut out GF beer as the grains used are de-glutenised. I also can't eat GF oats, and eg Knorr stock cubes state clearly they are GF but for me they are a no no as they contain maltodextrin - this is in such low levels it's deemed safe for normal coeliacs, but not me. I do have to read every single label and I can't eat out which is a pain. Btw KALLO stock cubes sold in waitrose are perfect and tastier than any others!

I see my consultant this week for follow up endoscopy. If this doesn't show I have responded to the super sensitive diet then it is possible that I could have a rare condition called 'refractory coeliac disease' which would start a whole new investigation....so fingers crossed

Hope this helps

[pretender in reply to suzi_lewis]

Refractory Coeliac Disease is considered when the patient does not repond to the Gluten Free diet. I had an investigation under those terms in January 2011 and it was found that I had a Marsh 0 biopsy (gut healed) with an AGA of 42 = to 9 months on a GF diet. Come back in a year weight from 68 to 92.5kilo(happy). Prior to all this a ggt = negative, IgA=negative, IgG=negative, ttg=0.9. I exclude all known ingredients from a gluten source. So my CD had cleared up but symptoms continued????? an allergy. Now excluding all known allergen's and blood pressure down from 210/108 to 115/76 rash dissappearing thanks to Piriton.

[Dona]

I have type 1 refractory coeliac disease with a marsh grade 3b, I am super senistive have to aviod gluten and wheat, my biopsies taken november 2012 where alot worse that wot they were in feb 2012, there is no recovery from this, any body esle suffering the same

[Mango1]

Having had severe reactions ( i.e. chronic diarrhoe and needing to be hospitalised and put on a drip more times that I can count) to some foods and not knowing which, I lived on rice for about 6 weeks and gradually reintroduced foods back into my diet. I found that foods containing gluton really affected me and that I was much better not eating them. I have had 2 tests for coeliac which came up negative but that I have diverticular disease and must follow a low fibre diet. This worked fairly well together with no gluton for about 6 years, except when on holiday, but then I became very unwell again and have now been diagnosed with lactose intolerance. Again by leaving this out of my diet it worked initially (November 2012 diagnosed) by stopping the constant diarrhoe, but after Christmas I started getting severe pains in my stomach and have been told that I may have an ulcer and have been prescribed meds for this.

Having only recently found this website it seems to me that a lot of us all have more that one intolerance and that it is left mainly to the patient to try and heal ourselves. It can't be a coincidence that many of us all experience the same awful symptoms after eating certain foods. With this in mind I am so grateful to have found this site totally by accident and am not overreacting my symptoms, which some doctors seem to think. I don't want to be in their surgery any more than they don't want me there. I hope we all have a healthier 2013.

[MaddieS]

Wow, we're all so different! It is amazing the variety of reactions...

It's really helpful for me to hear about other people's experiences because I often feel very isolated with this and long for solidarity!

I call myself super-sensitive, rather than having been labelled this by the medical profession, because I cannot tolerate even the teeny weeniest bits of gluten without getting a reaction. For example, I no longer order cups of tea or anything in a glass from a cafe due to having had a reaction from this in the past. Now if I go out anywhere to meet a friend I order bottled water and ask them to let me remove the lid myself. I take my own food everywhere I go (I am lucky that I live in a totally gluten free house so at least feel completely safe at home).

Anyone who wants to be in touch about this please feel free to message me