Can A Child Have Dh Without Having Celiac Disease?

[Guest Wheat Free Me]

About 4 years ago i was diagnosed with celiac disease. I had just had a baby so I was conserned that she would also have celiac disease. For the first 2 and a half years she was not given anything with wheat. The next time I saw the doctor he wanted me to start introducing wheat into her diet to see if there would be any reactions. I few months went by and we were confident that she did not have celiac disease or DH.

However in the past year I noticed a patch of scaley skin on her left shin, it wasn't red just flakey. A month went by and the spot had not only gotten bigger and red but it was spreading. At first the doctor thought it was a fungel infection so we becane putting the cream on but it continued to get worse. Three months later, 3 different antibiotics and 3 creams later it got worse. So I got her to a Dermatologist and they said they thought it was psoriasis , eczema or Dermititis so we were sent home with more medications.

Granted the rash doesn't look like your normal DH rash but its in all the right places. Then it clicked for the past year and a half she's had countless ear infections, headaches, strep throst and this rash all over her body.

Am I crazy to think that she might have celiac disease or a wheat allergy because I do? Doesn't that put her at a higher risk of get celiac disease? And what about the rash? Anytime I try to explain to the doctor that I have celiac disease and I think her rash could be food related they just smile and say she's fine. So what do I do?

[darlindeb25]

From what I understand, if you have dermatitis herpetiformis you do have celiac disease. You need a doctor to test her rash specifically for this. If she is celiac, going gluten free will clear up the rash and that is what you really want, right? Chances are, if you are celiac, then chances are she is too, especially with this huge rash. Please get it checked out.

[Fiddle-Faddle]

DH is celiac disease, even if there is no villi damage to the intestines.

Ear infections are often caused by dairy sensitivity, but I don't see why they couldn't be caused by a problem with gluten, too.

I had a strep skin infection right before finding out I had gluten problems--and I had only had strep throat once in my life before, even though I grew up with a brother who had it at least once a year. We do know that celiac screws up the immune response.

I wouldn't let this rash continue, and I would not treat it with creams or anything else until they can tell you EXACTLY what it is, even if they have to biopsy it. They will most likely do bloodwork for celiac, at least, I hope they would. You need to be sure that you have a doctor who is an expert in celiac, because most of them know squat about it, as it was never taught in medical school.

Please keep us posted, okay?

[Guest Wheat Free Me]

Thanks for all the information. I'm new to this posting thing so I'll apologize now incase this gets posted 3 times.

Fiddle-Faddle made this comment that really got me thinking."We do know that celiac screws up the immune response."

When I first got my daughter in to see a dermatologist they said that she had psoriasis. When I asked what caused this or how she got it they said they had no idea except that people with psoriasis have weak immune system. I then asked if her rash could be related to a food allergy and he said absolutly not. But then i remebered how many times I was mis-diagnosed and I do not want her to go threw what I had to go threw. So on th 16th we go back to the dermatolorist and they will do a biopsy. Hopefully that will tell us exactly what it is and how to get rid of it. In the mean time I'm removing all wheat and gluten from her diet she won't like not being able to eat her chef' Boyardee microwave meals anymore but she can learn to live without them. Her health is more important.

Today I was finally able to convince her doctor that she needed to see an allergist and get tested for celiac. Either way I'll be looking for a new doctor who at least has heard of celiac disease.

[buffettbride]

My daughter had dry, scaley skin on her shins as well, for about a year or so before she was diagnosed with Celiac, so I'd definitely say it is something to keep an eye on. It started as a dry, flakey skin patch and then grew to be large, red, and inflamed.

It was cleared up completely by removing gluten from her diet.

If your daughter still has some of that skin problem, you can have it biopsied. Much less invasive than an endoscopy (which might not show there is enough damage anyway).

At minimum, you could try removing gluten from her diet and see if the rash clears up.

[gfgypsyqueen]

My daughter also had a rash and it does not look like DH. Hers is on her feet and calves. But it was a constant, red, pin head rash and insanely itchy. Once she finally went gluten-free the rash is gone. It comes back when she is glutened.

[Fiddle-Faddle]

If you are getting a biopsy, you will need to keep your daughter on gluten until the biopsy.

I was not told before my own biopsy that going off gluten and being on prednisone would screw up the biopsy results.

Meanwhile, you can scout out recipes that duplicate Chef Boyardee using rice pasta for when she does go off gluten--and I would take her off gluten as soon as the biopsy is over, no matter what the results.

It's also good to know that most of us here had to go off dairy, too--but many of us were able to go back on dairy after our guts healed from the gluten damage.

[Fiddle-Faddle]

Allergists are experts in allergies--and celiac is not an allergy, so it is likely that your daughter will end up being tested for wheat allergy, test negative, and then you will be told that she does not have celiac.

It is a TOTALLY different misfunction, and the blood tests are completely different from allergy tests.

Please do as much research as you can, learn as much about both as you can, so that you can totally hold your own with the doctors! It's a shame, but unfortunately true that we have to be our own doctors. Hopefully, the medical system will catch up, but right now, most simply are clueless about celiac.

Can you find a celiac specialist in your area?

[Guest Wheat Free Me]

My daughter had dry, scaley skin on her shins as well, for about a year or so before she was diagnosed with Celiac, so I'd definitely say it is something to keep an eye on. It started as a dry, flakey skin patch and then grew to be large, red, and inflamed.

It was cleared up completely by removing gluten from her diet.

That's exactly how her rash started out, scaley and on her shin, eventualy turning into large red spots all over her body. At least I know that she isn't the only kid who has a rash that doen't look exactly like DH.

This morning I spent a while going threw all her new medication that the doctor put her on. None of them contain any wheat or gluten which is a huge plus. However the rash has spread all over her body, and its completly out of control so he put her on steriods. Granted the steriods will be a tempoary fix so I know I need to get her off wheat so it doesn't come back worse. The hard part is that now that she's on setriods she can't get any skin test. They can't even byopsey the rash because the steriods will efffect the resluts. So I have to decide do I put her on the steriods and take her off all gluten in an atempt to get this rash under control? Or do I keep her off the steroides and on the wheat until the dermatologist can byopsey the rash?

The dermatologist has alreday told me that the skin byopsy would just tell them if the rash was eczema or psoriasis it won't tell them if she's allergic to gluten. The other doctor did test her rash but again he was just lookingto see if it was bacterial or fungal which it came back negitive for both which is why he sent me to the dermatologist.

So round and round we go. I wish my doctor would see her but he refuses to do kids, and he's the only doctor I could find in my area that had ever heard of celiac. So she's seeing his partner but he's just learning about it.

All I know is that "my baby" is sick and not getting better. I almost died before I was diagnosed and I can't just sit around and feed her wheat knowing that it could be doing serious damage. When I was diagnosed I was told that there was a very high chance that she would also have celiac disease I never should have let her eat wheat. All I can do now is take the wheat away for good. I hate haveing it in my home anyway so this will make the enviorment in the house closer to gluten free. So if the rash goes away when I take her off wheat then I'll know if she really has it celiac. If it doesn't go away then I'll go from there.

So it sucks but my daughter has celiac disease!

[Michi8]

From the description of the rash, it does sound like psoriasis. From what I understand, psoriasis is hypothesized to be autoimmune, and can be connected to celiac. Whether they are celiac or not, some sufferers do find that being gluten free helps their rash.

Michelle

[Fiddle-Faddle]

If your dermatologist is talking about "allergy to wheat," he is an idiot. Celiac diseaseis not an allergy, and he should not even be looking for a wheat allergy. Besides, skin biopsy plus the proper tests DOES clearly show celiac disease/dermatitis herpetiformis.

I think using steroids as a one-time thing to control the rash and getting her off wheat and gluten immediately sounds like the safest course.

Also wondering--was this episode triggered by by a vaccine, by any chance? My son's was....

[buffettbride]

That's tough. Steroids and no gluten versus no steroids and gluten. That is a tough call and I suppose it depends on how badly you want a doctor's diagnosis. If it is important to you then keep her on gluten (don't forget, it's not just wheat you'll need to keep from her, but oats, barley, and rye as well) until you can get a biopsy from the dermatologist.

Are you anywhere close to a Children's Hospital or Mayo clinic? Perhaps you can make a special trip if there is one sort-of near by.

[Franceen]

If, for some reason, you are very committed to getting a medical confirmation/diagnosis for your daughter then you will have to hunt and hunt and travel until you find a practice that is knowledgeable in Celiac or a Dr. that is willing to go to his medical library and research! If you aren't that committed to a medical diagnosis (and I've found it isn't really all that necessary), then put your daughter on a gluten-free diet for at least a month or three (DH takes a long time to clear), and see if it goes away!

In the long run I think that her health and wellbeing is the most important and whatever way you can help that would be the best for her and you.

And you are experienced at gluten-free diets, so it should be pretty painless.

And a good way to not have a child get addicted to doughnuts, cookies, cakes, etc early in life! (A benefit?).

Good luck whichever way you choose to go.

[Guest Wheat Free Me]

I think using steroids as a one-time thing to control the rash and getting her off wheat and gluten immediately sounds like the safest course.

Also wondering--was this episode triggered by by a vaccine, by any chance? My son's was....

I agree. She's now on a steriod cream as well as oral steroids which will only last a few more days. I thought about not doing it and getting her tested but that seemed pointless because if I take her off gluten and she gets better than I know what it is. So for now no testing her rash is a little better hopefully with time it the rash will heal and she won't have scarse.

There is a big possibilty that her vaccine was the main trigger. She had just one spot before her shots and after that it began to spread. Wow I never would have thought of that. I hope other mom;s read this and see if there is some way to protect there kids.

[Michi8]

I agree. She's now on a steriod cream as well as oral steroids which will only last a few more days. I thought about not doing it and getting her tested but that seemed pointless because if I take her off gluten and she gets better than I know what it is. So for now no testing her rash is a little better hopefully with time it the rash will heal and she won't have scarse.

There is a big possibilty that her vaccine was the main trigger. She had just one spot before her shots and after that it began to spread. Wow I never would have thought of that. I hope other mom;s read this and see if there is some way to protect there kids.

A vaccine could be a trigger. However, my daughter has chronic eczema (and OCD) and she's never had a vaccine in her life. I do, however, think that her health issues are diet related, and will be trying an elimination diet, including removing gluten.

If dietary changes help, then you have your answer.

Michelle

[Rick45]

NEW DOCTOR? TELL THE OLD ONE TO DO RESERCH < MOST DOCTORS MEAN WELL. My cousin takes the research articles, from this site, to the doctor so he can learn too! Remember hit the print friendly button, when you read something supported by research, so you don't have to find it later.

[Guest Wheat Free Me]

NEW DOCTOR? TELL THE OLD ONE TO DO RESERCH < MOST DOCTORS MEAN WELL. My cousin takes the research articles, from this site, to the doctor so he can learn too! Remember hit the print friendly button, when you read something supported by research, so you don't have to find it later.

I know what you mean my mother's doctor in Massachusets called in me in Florida because he had a few patients that wanted to be tested for celiac disease but he didn't know what test to do. I told him to go to this site and refer all his patients to someone who knew what they were talking about. Granted he is a good old fashion doctor but this whole "thing" as he calls it confuses the heck out of him. LOL

I got lucky and found a doctor who had actually heard of celiac disease and even though his office is about an hour away its worth not having to explain every little problem that comes with celiac disease. Some doctors are eger to learn while others still think its 20 different things.

Hopefully with all the Jenny McCarthy interviews it will get more people to look up celiac disease or a gluten free diet.

[ravenwoodglass]

I don't have a lot to add to the good advice you have gotten already except that one of the gluten intolerant gene's (mine coincidentally ) is associated with excema in countries that do not consume large amounts of gluten foods. My DD had this show up as one of the first indications of celiac when she was still an infant. Her celiac panels, and the others in my family were all a low positive, except me who has always shown negative even when almost dead. This caused a bit of confusion for a while when we were told that we could keep her on gluten until the results were higher. We went gluten free and saw a lot of stuff that was troublesome resolve in addition to the skin issues.