New Patient, Help?

[Aeman56]

We are BRAND NEW to Celiacs. We really weren't given a lot of details on the condition. My son has a constant face rash. The dr said its possible its from the celiacs but she had never seen one and was unsure. It does not seem to itch, he never touches it. It looks dry and scaly sometimes. It looks nothing like DH to me which is the only celiacs related rash I could find.

We changed his diet and it seems like the LESS wheat he eats, the worse the rash becomes? Anyone know what gives? What can help this? Will his face be red like this forever? Is there any medications or anything for this?

Sorry the images are not that great, its hard to get him to sit still. Thank you so much to anyone who can offer any ideas.

http://i39.photobucket.com/albums/e187/xxa...xx/P4260020.webp

http://i39.photobucket.com/albums/e187/xxa...xx/P4231029.webp

[mushroom]

We are BRAND NEW to Celiacs. We really weren't given a lot of details on the condition. My son has a constant face rash. The dr said its possible its from the celiacs but she had never seen one and was unsure. It does not seem to itch, he never touches it. It looks dry and scaly sometimes. It looks nothing like DH to me which is the only celiacs related rash I could find.

We changed his diet and it seems like the LESS wheat he eats, the worse the rash becomes? Anyone know what gives? What can help this? Will his face be red like this forever? Is there any medications or anything for this?

Sorry the images are not that great, its hard to get him to sit still. Thank you so much to anyone who can offer any ideas.

http://i39.photobucket.com/albums/e187/xxa...xx/P4260020.webp

http://i39.photobucket.com/albums/e187/xxa...xx/P4231029.webp

It is almost impossible to tell from looking at the pictures. It could be caused by some other food intolerance. If it is scaly it could be psoriasis although it does not normally first appear on the face. I have it on my face now and it looks different from that. Does it have any bumps/blisters/heads, or is it just red?.

When we go gluten-free our diets often change and/or different food intolerances show up. I showed up very intolerant to soy with a red rash like that all over my neck and chest, but it itched like the dickens. It did not happen until I eliminated gluten, because somehow the gluten overrides everything else. How long has he had the rash?

When you say "the less wheat he eats" does this imply that you are not totally gluten free? Gluten lite is really not an option if you are celiac. You must be totally gluten free in order to heal. What is his current diet? Is he dairy free? Dairy is often initially a problem in those with celiac and it is best to eliminate it totally at first. Keep his diet as simple as you possibly can, fish, meat, rice, fruits and veggies. Eliminate the known potential allergens like corn, dairy, soy, nuts, eggs and see what happens. That is my best advice at the moment.

[Aeman56]

He has had the rash since he was ... maybe six months old. I have asked about things like eczema and they said "maybe its from drool." The rash does not have bumps, it looks nothing like the pictures I see of DH, but they tell me it must be that. No sores, he does not itch it or seem to notice it, it feels like hands that have spent much to long washing dishes in the winter..

He is not 100% gluten free. They have him scheduled for one more test, they said stopping gluten could cause inaccurate results and we would have to start over. But he has dropped a scary amount of weight, failed the blood test twice, stopped eating almost completely, and even a cookie would give him horrible diarrhea which he had for weeks despite not eating. He has always had stomach problems, but for a long time they assumed it was his severe acid reflux he has had since birth and wouldn't look at him.

I am not supposed to stop the gluten at all, but the test was over a month away when the diagnosed him. I have a VERY sick baby on my hands who was not eating or sleeping or growing on track. I had to try something, I cut gluten considerably, and am still trying very hard to find things it is not in. The diarrhea has ended, he now eats one full meal a day as well... I just can't decide if the rash is related. It may seem the pictures are unclear, but thats exactly how the rash looks, like just red colored cheeks. You can not tell it is dry or scaly unless you touch it.

Thank you for taking time to reply to me. I am very lost is in this illness...allergy...whatever it maybe.

It is almost impossible to tell from looking at the pictures. It could be caused by some other food intolerance. If it is scaly it could be psoriasis although it does not normally first appear on the face. I have it on my face now and it looks different from that. Does it have any bumps/blisters/heads, or is it just red?.

When we go gluten-free our diets often change and/or different food intolerances show up. I showed up very intolerant to soy with a red rash like that all over my neck and chest, but it itched like the dickens. It did not happen until I eliminated gluten, because somehow the gluten overrides everything else. How long has he had the rash?

When you say "the less wheat he eats" does this imply that you are not totally gluten free? Gluten lite is really not an option if you are celiac. You must be totally gluten free in order to heal. What is his current diet? Is he dairy free? Dairy is often initially a problem in those with celiac and it is best to eliminate it totally at first. Keep his diet as simple as you possibly can, fish, meat, rice, fruits and veggies. Eliminate the known potential allergens like corn, dairy, soy, nuts, eggs and see what happens. That is my best advice at the moment.

[ang1e0251]

My assistant's grandson had multiple rashes of different kinds for years. She recently took him off red dye and they have all cleared up.

[Aeman56]

How did they know to try red dye? I see various dyes in food now that you have mentioned I went and looked.

Blue

Red

Yellow

are all currently in my cabinets...

My assistant's grandson had multiple rashes of different kinds for years. She recently took him off red dye and they have all cleared up.

[ang1e0251]

The baby had terrible behavior. Tantrums, hurting others, just an out of control child. Her other boys did not behave this way so it wasn't upbringing. When my assistant told me this child could not take the Pink medicine (antibiotics) when he needed it because he would vomit it as soon as it hit his stomach, I pointed out that he was obviously allergic to the dye. I had been wondering if this was his problem as my little niece would go berserk when she consumed red dye. My sister figured it out. His behavior sounded a lot like hers. My assistant convinced her daughter to do a food trial off the red dye. Sure enough, his behaviour settled down right away. He's still a high energy child but not "evil" like he seemed before.

His father didn't believe that could be the problem. He set out on the Internet to prove her wrong. What he found was a lot of evidence that red dye can affect behaviour. In addition he dug up some articles that told how red dye can affect the skin in rashes. He printed it all out and took it to the mother. Her other boy was the one with the rashes. She's had him to so many dr's, even Riley's Children's Hospital in Indy and they could do nothing for him. She read the papers and took him off red dye also and, there you go, he's rash free for the first time in his life. If he gets the dye, he breaks out again.

[Aeman56]

worth a try, ty very much

The baby had terrible behavior. Tantrums, hurting others, just an out of control child. Her other boys did not behave this way so it wasn't upbringing. When my assistant told me this child could not take the Pink medicine (antibiotics) when he needed it because he would vomit it as soon as it hit his stomach, I pointed out that he was obviously allergic to the dye. I had been wondering if this was his problem as my little niece would go berserk when she consumed red dye. My sister figured it out. His behavior sounded a lot like hers. My assistant convinced her daughter to do a food trial off the red dye. Sure enough, his behaviour settled down right away. He's still a high energy child but not "evil" like he seemed before.

His father didn't believe that could be the problem. He set out on the Internet to prove her wrong. What he found was a lot of evidence that red dye can affect behaviour. In addition he dug up some articles that told how red dye can affect the skin in rashes. He printed it all out and took it to the mother. Her other boy was the one with the rashes. She's had him to so many dr's, even Riley's Children's Hospital in Indy and they could do nothing for him. She read the papers and took him off red dye also and, there you go, he's rash free for the first time in his life. If he gets the dye, he breaks out again.

[ChemistMama]

Also get him tested for food allergies. I know a liitle one who lived for months with a scaly itchy face, and after they took out certain foods it cleared up. This can be done with a blood test.

What is the test you're waiting for? An endoscopy? if he 'failed' the blood test, I take that it means that his celiac test came back positive? If so, hang in there until the last test and then take him off gluten completely. Also keep in mind that if it is celiac and his villi are really damaged, he'll be lactose intolerant for awhile also. (you may want to take him of milk right now for awhile or use LActaid). My son's villi were really bad, and my Dr. said to give him the lactaid chewables with dairy products for 6 weeks after we went gluten-free, since it takes at least that long for the villi to heal.

I wish you luck!

[susan french]

I was diagnosed with DH in May of 2008. My symptoms started with severe itching, but no blisters; after a month the blisters started on the elbows and knees and lower back. The biopsy did indeed determine the DH. I have been gluten free about 8 months now, but the blisters and itching continued. I am allergic to dapsone. We've tried several remedies after my dermatologist conferred with his pals at the Mayo Clinic, I started on a regimen of 1500 mg of tetracycline daily, 1500 mg of nicotinimide (Vitamin B3 niacin) daily, as well as zantac and zyzal. Also evening primrose oil twice daily. The blisters are healing and no more have surfaced. I still itch but it is somewhat localized to the hands and feet and scalp. The itching seems to be better some days and flares up others. Somedays it feels like ants crawling and stinging; other times just the crawling sensation.

Nothing I have tried topically seems to help. I have experimented with every type of cream I can think of--desitin, vicks, carmex, aloe--nothing seems to help over time. Suggestions?

It seems trivial considering the severity of other types of disease, but the itching etc. can consume your mind and hinder concentration. If one wanted to torture another, they could use this method and be successful!!!

I do needlework and if I am occupied with that, I am concentrating and using both hands, the urge to scratch lessens. I'm sure others could used gardening or woodwork to preoccupy them.

Nighttime is the worst for me, and I take doxipin at bedtime to sleep. That has been effective.

Susan

Texas

[ChemistMama]

Nothing I have tried topically seems to help. I have experimented with every type of cream I can think of--desitin, vicks, carmex, aloe--nothing seems to help over time. Suggestions?

It seems trivial considering the severity of other types of disease, but the itching etc. can consume your mind and hinder concentration. If one wanted to torture another, they could use this method and be successful!!!

I do needlework and if I am occupied with that, I am concentrating and using both hands, the urge to scratch lessens. I'm sure others could used gardening or woodwork to preoccupy them.

Nighttime is the worst for me, and I take doxipin at bedtime to sleep. That has been effective.

I know what you mean! I'm on dapsone but am going off it because it makes my muscles really weak. I have secondary dermatitis from itching so much, and sarna sensitive lotion seems to help, it has a topical painkiller in it. From what I've read, it'll take lots of time, maybe up to a year, for the gluten to get out of your system and reduce your outbreaks. Unfortunately for me, I"ve been using food to soothe my itching...time to throw out the gluten-free brownies!!

HAve you been catching everything that may have gluten? I've been going through my beauty products and soaps, you'd be surprosed at what has wheat in it!! I use gluten-free lip gloss and makeup, and threw out everything in my cabinet with wheat in it. Even my hairspray had wheat protein in it!! Why, I ask!! There is some debate as to if gluten can actually permeate your skin, but for me, if you have lotion on your hands and then you pick something up to eat it, you're ingesting some of the lotion. Here in Indiana in the summer, it gets hot and when I sweat I don't want to worry about accidentally drinking sweat if I have foundation that contains wheat!! Also, watch for Vitamin E (tocopherols), sometimes they can be wheat based. GOod luck!!

[ang1e0251]

For me, the Indiana humidity is the killer! I agree with your advice to look for sneaky gluten if your DH isn't clearing up. I cannot handle topicals with gluten, it could be I'm allergic to wheat also. I don't know, I just have to avoid it in any product.

I did have sneaky gluten kick up my DH twice since going gluten-free. It really took some investigation to figure it out. I don't mean calling about product ingredients. I mean taking a hard look at products I was using every day and eliminating them to see how I felt. Once I was cleared up, I could think back to the last time I was clear and work forward to see what was new in my diet. It isn't easy. It's like CSI without the equipment.