Something going on.

[BabsyWabsy]

I had a telephone appt with the Advanced Nurse Practitioner at my GP's yesterday concerning my IgG results. She agrees that because they were very low, (0.3) when I was GF and tested without prior notice, and it increased when I am eating rye crackers, soup with barley and the occasional wheat free beer that something is going on, even though it doesn't meet the official criteria at (5.5). Rye & barley are 'less potent' than wheat, but because I have a wheat allergy I am not able to eat any wheat or wheat derivatives. I have over the years been diagnosed with IBS, wheat allergy and microscopic colitis, all of which are frequently misdiagnosed coeliac disease. She has gone away to think about it. I think there may be an endoscopy on the horizon.

[Smartdoc]

hi there, I am a retired GP, from what I have read it is highly likely that you are gluten intolerant in some way,there are hundreds of conditions with auto immune cause that are made better by introducing a gluten free diet, it is a rapidly developing field. This patient experience in the BMJ way back in 2012 is very interesting ,the consultant he saw has moved to America ,this says it all.The UK is way behind on this one.The current tests are not definitive, your biopsy might be negative,I strongly advise you to continue gluten free even if it is negative.

bmj.com/content/345/bmj.e7982

[BabsyWabsy in reply to Smartdoc]

Thanks Smartdoc, that is very helpful. It has taken years to be taken seriously, which I know is par for the course. I have been wheat free for years, but I have noticed a slight reaction when I have a (barley)beer, in that my lips get a bit sore, and the top of my back itches. This is not my imagination. Australia has a much better system and does not allow Codex wheat starch. It would be helpful if Coeliac UK adopted the same stance. In UK, the tests are not great, and I know better, less invasive systems are available in other countries. I will look up the BMJ article. Thank you for your advice, it is greatly appreciated. I find avoiding wheat and its derivatives is slightly more complicated than gluten free, although this is a good starting point. Some manufacturers use Codex wheat starch (a cheap ingredient)which is then labelled 'gluten free' in UK. I cannot tolerate this and sometimes get tripped up by it. A big problem is unintentional cross contamination, especially eating out. I always know within a few minutes if this happens, and make a dash for home. It is stressful at times.

[Smartdoc in reply to BabsyWabsy]

Hello, yes living in the uk with this problem is very difficult, there is no proper enforcement or monitoring system in place. It is very easy for companies to lie.

[BabsyWabsy in reply to Smartdoc]

In theory, the use of the CUK crossed grain symbol is carefully audited, and it costs companies a lot to become accredited. It also involves regular testing to ensure that cleaning regimes are effective at removing gluten. My back ground is in the food industry and I have been responsible for this stuff. I am dubious about the motivation of CUK, it seems to be a business which promotes foods and gains an income from this.

[Researchfan in reply to BabsyWabsy]

Hi BabsyWabsy.

Agree. Big food factory’s go to great lengths regards Hygiene and decontamination between production lines. As you probably know more, the problems with gluten contamination is usually from the source - the production in the field, storage and transportation of (imported) naturally gluten free grains and legumes etc.

And for everyone on GlutenfreeGuerillas that is new to a gluten free diet or newly dx coeliac: There’s been studies reviewing the levels of gluten in products labelled gluten free. Quite a high percentage are ‘contaminated’ with levels of allowed gluten above the Codex Alimentarious law (20 parts per million).

The ‘gluten intolerant’ may get away with eating these products as everyone is different and has their individual threshold. The newly dx coeliac May or may not get away with eating these products as they are potentially still a source of gluten in the diet. Coeliacs need to heal their gut. Which means being strict gluten free. And while it’s true after the gut is healed ‘gluten free’ products should be tested by the individual for tolerance, there are a minority of coeliacs that are sensitive to even the Codex level allowed. However repeat biopsy is the only way to tell unless obvious symptoms. But I’m no expert on this and people should consult their Gastroenterologist.

The Australian system is much better on this than Europe or America in my opinion. Gluten is not allowed. Anyone correct if wrong, but the level allowed is 4 parts per million. The Australian Coeliac charity did a study on gluten contamination of gluten free products too. A lot of imported products had higher than allowed levels of gluten.

Anyway sorry this is a long reply!

Hope you get answers soon, BabsyWabsy. You do right to not give up for an answer whether it’s coeliac or not given symptoms. Re your reaction with sore lips to barley. There are wheat allergens that cross react with other grains especially barley. Manchester University has a great website informing of allergens. For me My obvious to me allergy reaction tends to be sore mouth/blisters instantly. Barley gives me sore gums. But I haven’t ruled out a yeast sensitivity!

Just to update I’m officially in the Wheat/gluten allergic and intolerant camp. My results came back negative for Coeliac Disease. Personally it’s a relief. Nothing changes though as I’ve been advised by Gastroenterologist to continue on a gluten free diet.

Well wishes.

[Researchfan in reply to Researchfan]

research.bmh.manchester.ac....

Database re cross reactivity of wheat and other grains.

[BabsyWabsy in reply to Researchfan]

Hi Researchfan, thanks for the data. There are some raw materials that can be cross contaminated, oats is a case in point. However, if you manufacture GF products, you would have paperwork to show any test results that come along with your delivery, so anything 'out of spec' can be identified and sent back. In addition to this, gluten sensitive swabs are often used after clean down of manufacturing equipment to verify the efficacy of their cleaning.