Return of dermatitis herpetiformis

I found I could eat oats after a year but if I have more than one bowl a week I get symptoms. Some celiecs just can't tolerate oats. I have also found I've developed more allergies, peanuts make me itch, eggs cause inflamation and diary causes tiredness so I've cut those out as well and feel loads better. I also love crisps and react to Walkers if I eat them. Cross contamination in toasters, butter, pans is a something to watch. Hope you find the cause soon. I did a York test, expensive but the results really helped me to remove other food allergies out of my diet. Good Luck

It seems to me too that the likeliest problem is with the porridge. Surely you are using guaranteed gluten-free oats, if any? Provided that they are specifically GF, I have found oats very safe, though I don't eat it regularly. Also please make sure that you are not eating (or drinking) anything that may contain malt extract.

Another thing to consider is that you may have CFS/ME (chronic fatigue syndrome for those who don't know) at the same time. When you first got better after starting GF diet, one big stress factor to your body was removed, and you also recovered from CFS. If you have recently felt particularly stressed or been in low moods, this could have triggered your CFS/ME symptoms again.

I'm saying this because I was diagnosed with coeliac disease first and then 15 - 20 years later I also developed CFS. In any case, the symptoms you discribed, extreme fatigue, joint pain, brain fog, fit very well to a CFS diagnosis. CFS is a primarily neurological disease with autoimmune disease features, so it can be linked with coeliac disease.

I'm not good with oats too often either, even GF ones, so I limit them to very occasional.

HI I just wanted to advise that the symptoms you have described are exactly how I have felt. I have some of the stomach issues but they are only mild. I have had the DH I think for about 20 years and assume the CD for the same amount of time. I was diagnosed 3 years ago and thought that the rash would disappear when I went GF. It didn't in fact it changed, whereas I mainly had it on my knees, elbows and top of my back it went over my hips and buttocks as well. I have been taking 1 x 50 mg dapsone to control the DH every week. After 3 years of being GF I also didn't feel any better than before the diet and in some ways felt worse. I also suffer from terrible headaches and have to take sumatripan to get rid of them, paracetamols simply don't work on their own. I have spent the last 3 years trying to work out why I didn't feel better and why I still had this terrible rash, keeping diaries etc and really getting very frustrated with it all. My family have gone GF as well due to the cross contamination issue and I haven't eaten oats, anything with barley malt or codex wheat starch. Last month I stopped drinking milk, I still have butter and I have noticed a huge difference in both my wellbeing and my rash. I know we are all different but thought I would mention it to you, it only took me a week to think that the rash had got better.

Many Coeliacs have a problem with cows milk for at least a year after diagnosis....I use Tesco Organic Soya milk instead and have done for years now - I find the unsweetened one is nicest. I can tolerate a little cow's milk now but find I am better avoiding it as much as possible. Assume you use the Coeliac Food Directory when shopping to ensure you are buying only gluten free products?.. as much as possible that is - there are still occasions when products are contaminated ,,,cause us problems for a week or so and we never know why!! Sometimes it tells you of this on Coeliac UK website or via the FSA website - you can sign up to it for notifications....

Hi

If you join Coeliac Uk they have info re oats.... If you have them they need to be GF i.e. uncontaminated. Even so though there is a component in oats that is very similar to gluten that I cannot remember the name of which some coeliacs apparently cannot tolerate.....

Tiredness - vitam D deficiency or pernicious anaemia (B12 issues)??

Just a thought bu have you ever had your Thyroid checked out.  Some of the autoimmune systems are very camparable with underactive thyroid problems, which can make you very ill if undetected for years.

I agree with everyone talking about oats.  I have recently come off all gluten which has cleared up awful migraines, lack of energy etc.  However, now if I eat gluten I get dermatitis herpetiformis on my arms, chest, neck and stomach as well as getting an instant migraine and aching up my spine and back.  I have also discovered that I get the migraine and aching, but not the rash if I eat oats (even if they are GF oats or GF oat flour).  I would avoid the oats altogether (they also give my daughter who is coeliacs, similar problems).

I found out about my Hypothyroidism about 7 years ago. 4 years ago I had a food panel done and found out about my gluten allergy along with alot of other food allergies including milk, eggs, soy, garlic, avacados, etc. Within days of stopping gluten all my pains, stiffness and bowl movements greatly improved. Lost 10 pounds of inflamation. The few blisteres I was getting still increased threw the years to now include elbows, knees,backside, scalp and face. The itch is terrible. Still trying to figure out where I'm getting contaminated with gluten. Today I saw a dermatoligist and he took a biopsy. Waiting to hear back but looks like Dermatitis Herpetioformis. Googled Dapsone and side effects have me alittle worried. But sounds like my only option and releaf from the blisters and itching would be a blessing. Does anyone know of a topical that helps?