Now…before we get into this…please know I get the question on if touching gluten will cause a reaction a lot. I also see it come up quite a bit in online forums. I have read heated debates online over this topic and I am merely going by our personal experience of it. I honestly have gone back and forth on if I should even write this post because of the strong opinions on this topic. However, since I was asked this question again today, I felt drawn to share our own experiences with touching gluten. This is strictly what I have seen my youngest daughter go through. Not every person that has celiac disease will react to touch, but for our youngest daughter, she does.
There is a skin manifestation of celiac disease known as dermatitis herpetiformis (DH). This looks likes bumps and blisters that sometimes resemble herpes lesions, hence the name “herpetiformis”, but it absolutely is NOT caused by the herpes virus. Symptoms of DH tend to come and go, and it is VERY commonly diagnosed as eczema. DH affects about 15-25% of celiac patients. In fact, you may have no other symptoms of celiac disease minus an irritating rash you cannot get an explanation for. That was our experience.
Here are a couple pictures of what DH can look like. Each person may be different, but the two pictures on either end look very similar how our daughter will look when having a reaction.
When our youngest daughter was little, she kept experiencing a recurring rash on her bottom. It was miserable for her, and rightfully so. It was also miserable for us as her parents because we could not fix it. We tried changing laundry detergent, shampoo, body wash and lotion. Nothing worked. We tried cream after cream. It did not help. We tried not bathing her every day, to bathing her everyday. We were told to get her in a chlorinated pool to help dry things out and then to make sure she was completely dry before putting clothes on. We kept trying over and over to find her some relief. This went on for a little over TWO YEARS. We saw specialist after specialist. At one point, we were seeing a specialist in a different city and she brought in about eight other doctors to look at her rash. No one could give us an answer. We had tried many different creams but FINALLY after about two years, found one that works well (Protopic) . This cream is more for the treatment of eczema but for us, it worked like a charm but only for a short period of time because we did not know she had celiac disease. She had no other symptoms (or so we thought at the time). However…the ONLY thing that worked to take care of this rash, was getting the celiac disease diagnosis and adhering to a strict gluten free diet.
If you suspect DH, or if you have had a diagnosis of it, the BEST treatment is making sure you are gluten free. This will not get rid of DH right away, but it will keep it away in the long run. They do have medication you can take by mouth known as dapsone, sulphapyridine, and sulphamethoxypyridazine. Talk to your doctor if they are right for you. They also do have creams that can help. Protopic has helped calm our little one’s skin quicker than all the others we have tried.
I must say that it is now a lot easier to tell when our youngest daughter has been glutened because this rash will pop up. This rash is extremely itchy for her and makes her feel like her skin is burning. We have found that using an ice pack to calm the skin, benadryl to help with the itching (and calm her as well), and pro topic to help heal her skin is the best routine we can do while she rides it out. Others may have different suggestions but for us, that is what works. She cries and is miserable and there is nothing more we can do other than hold her and hope it gets better quickly. It usually takes 24 hours and she is back to normal.
DH is known to appear on the forearms, near elbows, hands, scalp, knees and buttocks. However, it can also appear in other places. It often appears on both sides of the body. For our daughter, she not only has this on her bottom but also her hands. This picture has the rash on it (it is hard to see in the pic) but she was miserable. She had a flare up from touching the railings at Disneyland. We packed our own food in (before we learned you can eat gluten free very easily there) so we know she did not accidentally eat something wrong. Other people touch those railings all day long, some even eat in line, and for our youngest celiac, it was an issue.
Although there are a lot of different opinions out there on if someone can have a problem simply by touching gluten…I truly believe they can. Our oldest does not have an issue (unless she touches it and does not wash her hands before she eats…that’s a whole other blog post), but our youngest does have an issue with it. I have witnessed it first hand myself. If you suspect your child has DH, please talk to your doctor. They can biopsy the skin (we did not have this done for DH (only staph) because we did not know she had celiac disease at that time) but many times they will diagnose it if it can clear up with going gluten free and flares up again when in contact with gluten. If left untreated, dermatitis herpetiformis will go up and down in severity. However, it will continue until an intervention is made. With treatment (medication and gluten free diet), the outlook for DH is very good. At least it has been with us.