Wondering if anyone else has uveitis/iritis along with gluten issues?

[Lexy]

I think I asked a similar question once before. I developed uveitis/iritis in my left eye AFTER having developed a weird itchy rash/swelling on my left elbow about 7 years ago. At the time the elbow thing was treated with antibiotics and when my eye problem developed no official medical link was made. The eye flareups come and go - if I'm lucky, only once a year, otherwise at least twice a year. I have never figured out what brings them on. I had hoped that being diagnosed with Dermatitis Herpetiformis (this spring) and having cut out gluten from my diet this might improve things. But unfortunately yesterday was spent at the eye clinic and now I have 2 months of steroid eyedrops to look forward to. I had recently had a few sips of 'gluten-free' (ie with de-glutinised barley) beer, which had immediately given an itchy reaction and I stopped drinking, and then a few days later I had drunk a different type of 'gluten-free' beer (which I'm now worried caused a 'silent' non-itchy reaction). Now I'm wondering if just that level of exposure to gluten would be enough to set off this flareup of uveitis/iritis or whether they are unrelated. The consultants have been no help when I've asked. Maybe they genuinely don't know and there is no proven connection between the two conditions? Just curious whether anyone else also has this combination of issues. Thanks.

[Lynxcat]

Hi Lexy, There are reams and reams of information which connects these conditions to gluten and coeliac disease. I don't personally have this but I did develop blepheritis and an extremely sore rash over one eye which often feels as though it has been nicked with a razor whilst at the same time feels as though it has been burnt by a naked flame.

I would say from what I have read that it is the gluten that is the most probable culprit that brings on your conditions. This isn't much help at all - but it looks like even more vigilance whilst you are out shopping.

ncbi.nlm.nih.gov/pubmed/198...

Did you spot this question earler in the year here:

glutenfreeguerrillas.health...

And this from the US site Celiac.com

celiac.com/gluten-free/topi...

[Lexy]

Thanks for this Lynxcat. I did think I had posted about this earlier and I see I did respond to that thread you reminded me of. Ta.

It's just that the medical professionals that I see are not making any connections. And this latest flareup really took me by surprise. Needless to say I will not be drinking any more 'gluten-free' beer just in case! It's all a bit frustrating as my dermatology consultant keeps talking about me being on a 'wheat-free' diet (which I have never said I was: I told him I had cut out gluten from my diet), but he never says to stay on it or whether it's important. Obviously I am staying gluten free but find it strange that the consultant has only prescribed Dapsone and then more or less washed his hands of me! I think I will just have to keep gradually cutting things out of my diet and see what seems to work.

Thanks again for your response and for reminding me of the earlier post on the subject. I wonder if anyone else will respond? Just curious!

[Penel]

I repied to your original post, Lexy. Sorry to hear that you have had another flare-up.

I don't see a consultant any more if I have a flare-up, I just self refer to the iritis clinic where a nurse confirms the condition and prescibes the steroids. I've been advised to wear sun glasses in summer (!), as the cause of iritis is unknown, and also told that iritis/uveitis is often called 'arthritis of the eye'. The nurses are very pleasant but have knowledge limited to the clinic. I'm pleased with the prompt service but wonder about the lack of knowledge generally, as iritis is found in association with many other conditions

I guess that specialisation in medicine doesn't help us.

innvista.com/health/ailment...

I have not had a flare-up for a while, I have also eliminated all processed food ( I've never drunk beer), so no bread, pasta, codex wheat etc. I don't know if the two events are linked or not.

Good luck with the diet.

[Lexy in reply to Penel]

Hi Penel, thanks for the response. So glad you've not had a flare-up! Wish I had a system like yours: the way it works for me I have to phone the eye clinic at the hospital and then they have to 'fit me in' around all the booked appointments which usually means I have to wait up to 6 hours to be seen, and by then the inflammation and pain is insane! So it basically wipes out two days for me, the day of the hospital visit and the next day recovering. Not so useful!

I guess being even stricter with my diet is the way to go - ironically I had only been tempted to try the 'gluten free' beer because we had a moment of sunshine here(hah! rain is back now). Apart from that beer, I too avoid all codex wheat products, although I do sometimes have rice-flour pasta or 'gluten free' bread rolls. Maybe I should cut these out as well?

Anyway, thanks for your message, I really appreciate it and I hope you stay clear of flare-ups for good!

[Akybraky1 in reply to Penel]

I am in USA and hav not heard of codex wheat. What is it?

[Penel in reply to Akybraky1]

In the UK ready-made foods can be labelled as "gluten free" if the gluten has been "washed out", this is known as codex wheat. It means that the food still has gluten in, but at an extremely low level. Not a good idea!

This is the explanation from the UK Coeliac site.

coeliac.org.uk/gluten-free-...

[BabsyWabsy in reply to Penel]

Quite agree Penel. Codex wheat must be in the ingredient list on packaging, in UK at least, but is not printed in bold, as technically it is not seen as an allergen (!), so it can be hard to spot on a food label. It seems many people react to it, including me. I now avoid all gluten free bread, but Codex starch can be present in some unexpected places. I recently came across it in smoked fish!

[Lexy]

I'm now wondering whether the Dapsone tablets may have played a part in the uveitis flare-up. I did some research and 'iritis' (another name for uveitis) is listed as a possible side-effect of Dapsone, albeit the case cited was when Dapsone was being used as treatment for leprosy. It still rang alarm bells... Add to this that over the last 5 weeks of taking Dapsone (first at 50mg daily then at 100mg daily) I was gradually losing strength/stamina (I'm a runner who normally manages 6miles but was struggling to get to 2miles!!), gradual loss of appetite, mood swings... - felt almost like I was being glutened! I've decided to come off the Dapsone (my own decision) and I'm seeing my GP next week (although last time we spoke he hadn't heard of Dapsone and had to look it up in his book of medications!). So we shall see.

[Lexy in reply to Lexy]

Finally got back to the gp and this time (different one from last time) she was very surprised to hear that I wasn't booked for monthly blood tests and she has now got me to start doing them! Still no word of a dietician or any further discussions of gluten free diet - but I didn't bring it up this time. I'm reasonably happy taking care of my own diet and I'm assuming with eating fairly healthily (lots of fruit and veg) and taking vitamins that I should be ok. It's been a long strange journey this one, so glad I've got this site and the ability to do my own research to keep me informed! Thanks guys!

[BoggyWoggy]

I, too, have suffered with painful and life-interrupting uveitus/iritus. On my own, I begged my doctor for help, as I was also experiencing great bloat, headaches, and frequent bowel issues. Upon testing, discovered I have a complete gluten-intolerance (non-Celiac). I took my eating seriously and cut out all gluten and most grains (I still consume corn and rice with no issues). My eye has only flared 2 times since the diet change. It has often flared 3-4 times in just a few months, taking months to heal and TONS of expensive steroids.

[Tuan in reply to BoggyWoggy]

I am turning to 40s living in Australia and sudently having uveitis and iritis both eyes. Symptom : hazy ,cloudy(in the morning after big meal at nite),floating dots, smear look. Bleeding ( black line appearing for couple hours normally by lunch time eating a foot long Subway ), Jumping tiny lights in the centre, white dots moving in the same parth sometime the light of two ping pong ball moving around the edge of the eyes when I close my eye in the shade, reading and driving start to be difficult. Medical history: 20 years of hemoriod and constant constipated and bleeding , running nose . My blood test IS positive latent TB and the treatment is still going on for two years with steroid, methotrexate and eye drops a tone of TB medicines but the imflamation keep flare up one after the other repeatedly minimum at least one a month. I got it check out at least 10 eyes specialist doctors through 4 hospitals (twice a month). Finally The doctor took all the jelly out inside my eye (biopsy) to investigate the cause but they found nothing( no fungus, no TB, no bacterial and no Lyme desiease). The symptom seem subsided when I tried sweaty excercise by jumping and drink heap of water or become a vetererian or eat less than normal as I thought I got diabetes but I can't go on as I lost too much weight 10kg. Then I went to nature practice medicine ( NOT the chinese medicine practice) she told me try gluten free and it works like magic. three and a half weeks now no flare up, I can feel it is improving each day and now I eat as much as I want to. No more constipated and bleeding but running nose is persist (neti pot can handle this). However I told the eye doctor but as if the doctor believe me as I am still under TB Treatment

[Akybraky1 in reply to BoggyWoggy]

Is there a chance you could have got glutted causing the episodes?

[Mamacpj]

I know this post is old; however, we discovered my husband had a gluten allergy years ago after he kept cycling through the above eye conditions. As soon as we eliminated gluten/wheat, the eye conditions went away. Ironically, he tried the "gluten free" beer you speak of this year and had issues with it. I think that is proof that companies should not try to "take something out of a product". Anyway, I am posting as he was recently diagnosed with diverticulitis and I think it is the result of eating gluten for 40+ years (not knowing he was allergic). I am wondering if others have gone on to have this condition?