Coeliac Disease and Eyelid problems

Really sorry to hear your story. I got the following from the Coeliac UK site.

https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

"What is dermatitis herpetiformis?

Dermatitis herpetiformis (DH) is the skin manifestation of coeliac disease which occurs as a rash that commonly occurs on the elbows, knees, shoulders, buttocks and face, with red, raised patches often with blisters. It affects around 1 in 10,000 people.

This might be what's going on for you, but to be sure about that, if it were me, I would ask to see a dermatologist. If it's affecting you emotionally, this has to be taken into account quickly. You could even print off a piece about DH and take it to your GP."

There is also some research which suggests that it can be because of:

Mild anaemia

Folic acid deficiency

Iron deficiency

which is common when we are first diagnosed, because we haven't been absorbing these nutrients from food.

https://patient.info/health/dermatitis-herpetiformis-leaflet

https://patient.info/doctor/dermatitis-herpetiformis-pro

Whichever it is , it needs to be seen by a specialist. Good luck.

I would also think it's a form of dermatitis herpetiformis. But then you may wonder why it started when you went on a GF diet... Did you take any new foodstuffs to your diet that you were not using before? For example soy or buckwheat might be the cause of this problem, because some people are sensitive to them.

Another thing that popped to my mind is, a relative of mine has had a similar exzema that affects her eyelids especially. She says the exzema is triggered by glutaneous grains AND sugar. She does not seem to have coeliac disease, but a doctor suspected it might be DH. In any case, you might want to try a completely sugar-free diet for a couple of weeks and see if it helps. This would entail avoiding sweets, cakes, sugared drinks, sugared yoghurts, etc., and it's preferable to avoid also white bread, even if gluten free. Sugary fruits can also trigger the problem, according to this relative, so during your trial also fruits should be removed or reduced to minimum. Once you improve, you can start adding them back one by one.

I'm sure you will find a cure though it can take a while. We look forward to hearing from your improvement, whatever it is that helps!

Thank you both so much for your help!! I am so grateful for your replies and they are much appreciated. I have an appointment with my GP early next week so i will ask to be referred to a dermatologist and will mention about DH and the deficiencies. I have been on tablets for calcium and iron - which i have been told to come off now - but i don't think my folic acid levels have been tested for a while.

Also, Im not really sure what new foodstuffs i have ate as ive tried a lot of GF things in the last few months so it is so difficult to put my finger on. As for the sugar, i think i will give it a try as i am desperate to get sorted!!

Thank you so much again for all your information, it has been so helpful and has definitely gave me new options to explore. Hopefully now i will be able to find what's causing it and how to stop it! Will keep you updated!

Hi Laura

I had the same problem after diagnoses, don't think there is a link to Celiac but it could be this.

Blepharitis is an inflammation of the eyelids, usually caused by an excess growth of bacteria that is ordinarily found on the skin, blockage of the eyelid's oil glands, and occasionally allergies.

Blepharitis is a common eye condition, causing the eyelids to be reddened, itchy, and somewhat swollen and scaly-appearing at the base of the eyelashes. It is the most common cause of dry eyes. A dysfunction of the eyelid's oil glands that leads to blepharitis occurs because of a hormone imbalance.

You can get a cream for it but the main cure is nightly washes of the skin and eyelashes with warm water and baby shampoo. Worked for me.

Hope it helps.

Wow! I'd had exactly the same experience. Although I've had styes in the past, nothing like what I am experiencing now I have gone gluten-free. I have red circles around my eyes with flaky skin, not really sore when first flares up but when the skin is healing and tightening, then it is sore. Having said that, I've had it bad for about 2 - 3 months now and the first signs were in the very week I went gluten-free.

That coincided with me eating popcorn instead of other treats and later, GF cornflakes. These are two things I rarely ate before GF.

Here are some things I would like you to consider. You can waste a fortune going to doctors and performing tests, but nothing works better than elimination tests you do on your own. I have eyelid problems similar to yours, but much worse. It is so extreme for me that I cannot look at a cell phone, watch tv or read books. Seriously. So, try cutting out texting or looking at a cell phone for a week. See if you get results. Try cutting out computer usage. See if you get results. Its not easy to do these things, but it will help reveal if how you angle your eyes towards cell phones or the heat and rays emitted by computers monitors are affecting you. The trials cost you nothing but time and small sacrifices. That's my advice.

ooops... I forgot to add. The doctors have given me dozens of creams and I've tried 20+ different antibiotocs. Nothing. You know what worked well for me was this tea tree oil body wash sold at Trader Joe's here in America. It is made of tea tree + peppermint and it has worked wonders for me (as long as I stray from cell phones and other triggers). only in USA though.

Hi Laura

I am a coeliac and the easiest way I have found to figure out what is wrong with you is to stop eating each food you do eat for about a week or two. Doing this i found out that I am allergic to all dairy as well as gluten.

Dairy makes my eyes swollen  my nose run, I sneeze non stop violently and am sick, agonising cramps gagging etc etc,

   Also as an example dried dates and raisins make my eyes swollen and sneezing etc also.

   Any artificial ingredients sugars caffiene biscuits sweets all have similar effects on me.

Eating gluten FREE bread makes my mind cloudy so I stopped that too.

     I am taking a very long time to recover and have eventually decided to have my mercury ( toxic ) fillings removed and replaced with white ones as I am desperate to try anything which could be slowing healing.

  As mercury is supposedly responsible for the onset of some autoimmune disorders not to mention  dozens of other conditions I decided this is the path i will take.

  It may seem like too much info but when complications and various other allergies start popping up every other day it becomes apparent that something is causing this to happen.

Coeliac or dairy intillerance are the symptoms, but no one is asking what the cause is. Nothing happens without a cause..

   So in a nutshell try the removal method of one item each time and do not introduce any new foods into your diet as you do this or it will not work.

I hope this works. Also write everything down in a decent journal,  foods and affects on you etc dates the lot as you will not remember it all.

Best regards

 

Hi I suffered with just 1 red eye and swollen lid for years before my coeliac was diagnosed docs had no idea what it was until 1 day a specialist asked me if I had ever been diagnosed with an auto immune disease. I immediately researched it and found I had nearly all symptoms of coeliac disease as soon as I had it confirmed I cut out gluten and my eye started to improve which was brill. One day it all started again only this time after keeping a diary I noticed my eye started again every time I ate oats even gf ones , they contain a similar product to gluten so look out for oats and see if cutting them out helps you xx

I am old celiac patient with glutean free diet,along with lactose intolerance too. .I guess most of food in markeets contain wheat flour without writing in the ingrediants list.

Since last 3 years I have off and on severe itching in my both eye lids and it goes off after limiting GF foods.But since last 6 months I have constatntly excessive tears coming out from both eyes.It is not infection of eye lids,which is usually in one eye with swelling.There is no swelling, no pus but only watery tears from both eyes.No redness of conjuctiva.There were scales and crusts on inner side of both eye-lids , last year which are gone.

But please help me in getting rid of excessive tears and itching.Eye specialt think , it is external allergy but his anti-allergic eye drops did not work..Please help me.

Hi Laura, I too have Coelic Disease and suddenly got the same symptoms about 3 weeks ago. I've been on a gluten free diet for about 4 months now.

Can you please help me?

What was your diagnosis in the end?

How long did your eyelid problems last and how did you treat them?

I would really appreciate any help you could give

 

I was going to write to you, but the others have given very solid information about derma-herpa. . . allergies and such. Did anyone mention asking to be tested for Sjogren's? Look the symptoms up of everything the people here have mentioned and see if the symptoms match.  I hope you feel better soon!