Doctor And Dh

[aedems]

We went to the ped Derm today. My daughter (age 5) has some of the symptoms of celiac, such as not even being on the weight/height charts, falling off her own growth curve and family history of many GI disorders (none diagnosed as yet with celiac as it has not been worked up in any of them). She then developed a funky rash which two trips to the pediatrician gave as poison ivy, scabies and chickenpox as a diagnosis. We went to a regular dermatologist who said it was a perplexing rash. We then took her to a ped dermatologist today who diagnosed her with papular urticaria (a hypersensitivity reaction to insects). We brought up the idea of celiac, but was told it did not fit the pattern because the rash only lasted 3 weeks and then went away and that DH would never go away until treated. Is this true?

[Ursa Major]

I don't believe that is true at all. DH comes and goes, and not necessarily in the same place, either. You get it in one place, after a while it heals, and it pops up somewhere else some other time.

I just did a google search, and it seems that the opinions are divided on this.

[sharikay]

In the case of my DH, my rash would get little watery blisters and then calm down for a few days and come back, generally worse. The rash doesn't go away and mine always came back in the same areas and spread to more areas. There are pictures of it on this web site. Do a search of DH and you can find and compare. If you aren't satisfied with the Dr.'s opinion, the final determination of DH is a punch biopsy. Dermatologists usually know the skin disorders. Best of wishes for your little girl.

[Pegster]

My dh rash came and went for years without any kind of pattern. I was also diagnosed with many of the same things as your daughter and was given all sorts of creams and ointments. The rash (on my elbows mostly) would go away for a while and then show up again. It took people asking me what was wrong with my elbows before I went to a dermatologist instead of a family doctor and got the biopsies and the correct diagnosis.

[Franceen]

Biopsies (both endoscopy and skin for DH) are considered the "official gold standard diagnosis" - but according to my Dr. only IF you've been eating gluten consistently, and have not taken allergy meds or dapsone.

In my opinion, the only GOLD STANDARD of diagnosis is the positive result (abatement of symptoms) in either or both digestive symptoms or DH. Everything for me has been negative (blood, stool, skin biopsy) and my Dr. says that since gluten-free works so well, that's got to be the diagnosis.

My Dr. is an allergist and in her practice is an internal meds/allergist. They did the biopsy. There are no dermatologists in this area (at least not on my very prevalent Ins. HMO list). The only ones near here don't know didly squat. I went to one who told me his diagnosis was "YOU HAVE ITCH"....Even I can do a better diagnosis than that!!!!!!!!! The other derm's here mostly do cosmetic stuff on old people's eyes and teenage acne. Those two things are very profitable.

As for the remission thing: I twice went into spontaneous remission for about 6 weeks. Both times I was in Germany. (Oddly one doesn't get as much gluten in the diet in Germany). But the stuff came back with a bang shortly thereafter.

But basically the rash doesn't come and go on a daily basis. It is SO itchy and SO blistering that it generally takes a lot longer to go away than a few days. Rash that is here one day and gone the next, isn't real typical of DH, from my research.

I had the following diagnoses prior to my own (and the allergist's based on diet results):

Lupus, Syphillu (my primary care physician who I refuse to see anymore), scabies, some type of infection, insect bites (summer diagnosis), contact dermatitis, allergy to carbomer, chromium, molds, dust mites, cat dander (all separate diagnoses!), and finally "STRESS" and "NEUROSES" ...........................................

I have been gluten-free since Dec. and almost died from Dapsone (liver reaction and anemia). I am now oral medication free (except Allegra for minor summer allergies - NASAL Rhinitis), steroid cream free. And all the rash is going away - slowly. A few new "little spots" here and there, but nothing like before.

Keeping my fingers crossed.

[aedems]

Thanks for everyone's info. The rash took 21 days to go "away", at least systemically. Now she is getting a few new blisters again, but definitely not as prevalant as before. We are going gluten-free on Wednesday (they get out of school on Tuesday). She is being blood tested again in July while they are retesting her her short stature profile again. Keep your fingers crossed!!

[Guest nini]

your best bet, and the most reliable diagnostic tool in my modest opinion, is to put her on the gluten-free diet and see how she responds... my daughter's blood tests were negative, but I'm here to tell ya, the diet made such a tremendous difference that we will NEVER go back to gluten... Regardless of whether it is DH, Celiac or Gluten Intolerance, the treatment is the same, the gluten-free diet for life... and the truly best way to find out if you are gluten intolerant, or if a rash or other symptoms are caused by ingesting gluten, then the most logical course of action, and the simplest, is to remove gluten from the diet. Most Dr.s are not going to advise this because they dont' make any profit off of a diet, not like they would for blood tests, biopsies and medications...

[Idahogirl]

I would definitely have the doctor perform a biopsy. It took years before my dermatologist finally got the bright idea . My DH has come and gone sporadically, even going into remission for months at a time, so it's hard to put it in a box-everyone's different. I am now gluten free and even when I have eaten something I shouldn't and get sick to my stomach, no bumps appear.

If it is DH and gluten is removed, then there shouldn't be anything to biopsy, since the reaction needs gluten to happen. The biopsy is such a simple procedure, and would give you the definite answer you need. Plus, if what I've heard is right, if it is DH, then you can be sure she has celiac, too. Good luck!

Lisa

[chris hudson]

Please help.....I'm new, and just started eliminating wheat and gluten. It's very difficult to understand were gluten is hidden. I still can't find the delphi list. I've read in this forum about gluten free items, but it seems not everyone agrees. Is there a sure way to fing out? Do you call each manufacture? Any help would be greatly appreciated. I'm looking for gluten free soymilk, pudding, cereal for less than 4.00 a box, and some alcohol.

[rumbles]

Chris, more and more manufacturers are listing whether or not their products contain gluten on their web sites (often either on the nutrition page or on a link that is on the nutrition page). I find it more convenient to email the manufacturers, - it usually takes them two-to-five days to respond, but that way I've got a response that I can go back to when I need it. I also go back and check with the manufacturers about every three months, to make sure that they haven't changed their product ingredients. Some manufacturers make it a policy to list wheat, barley, rye or gluten if there is any in their products; a couple of those manufacturers are Kraft and Ortega (confirmed with Ortega yesterday). There are others, but I'm going blank right now.

Some things that may contain gluten that aren't obvious are: prescription drugs (check with pharmacist or doctor or manufacturer), over-the-counter medications (such as cold medicines, cough medicines, headache medicines, acid indigestion tablets, etc.), vitamins, stamps & envelopes (glue), some toothpastes, mouthwashes, sauce mixes, soups, food equipment that was used for making/preping/cooking products containing gluten (such as toasters, cutting boards, grills, etc.), seasonings, some flavors/brands of ice cream, soy sauce (unless marked gluten free), teriyaki sauce (make from soy sauce), many flavored alcohols, beer (except gluten free beer - there are two manufacturers in the U.S. that make gluten-free beer: Rampapo Valley [only one of their beer products is gluten-free] and Bards Tale), there are other gluten-free beer manufacturers in other countries, some butter spreads, some salad dressings.

If you're not sure about a food, don't eat it until you can verify that it is gluten free. That may mean starting out on a plain meat/fruit/vegetable diet, but that's much safer for your health (immediate and long term) than taking chances.

Hope this helps!

[Isonic]

Every year my local excellent coeliac society in Sydney has a dermatologist and a nutritionist talk on DH. Years ago it was mentioned that dietary iodine (ingested, not topical) is also something that causes a DH outbreak.

This means that as well as avoiding gluten in all its obvious and not obvious forms, DH sufferers should also avoid eating seafood and saltwater fish and excessive salt, especially iodised salt.

That's fine with me. I can eat freshwater fish and use unrefined sea salt in very small quantities. I keep my DH under control solely with diet and have never used dapsone - which is now horrendously expensive in Australia, I believe.

Outbreaks (caused by unknown gluten added to restaurant food despite a gluten-free request, or by fish being mislabeled) usually last six weeks or so.

[ravenwoodglass]

Every year my local excellent coeliac society in Sydney has a dermatologist and a nutritionist talk on DH. Years ago it was mentioned that dietary iodine (ingested, not topical) is also something that causes a DH outbreak.

This means that as well as avoiding gluten in all its obvious and not obvious forms, DH sufferers should also avoid eating seafood and saltwater fish and excessive salt, especially iodised salt.

That's fine with me. I can eat freshwater fish and use unrefined sea salt in very small quantities. I keep my DH under control solely with diet and have never used dapsone - which is now horrendously expensive in Australia, I believe.

Outbreaks (caused by unknown gluten added to restaurant food despite a gluten-free request, or by fish being mislabeled) usually last six weeks or so.

Thanks so much for posting about the seafood. Perhaps this is why my son has had a breakout this week also. We have been searching for something we had consumed in common and thought perhaps we had a CC issue in his case that had been mild. I linked my outbreak to some supplement shakes but it didn't explain his. We ate shrimp twice last week perhaps that was the trigger for him and the reason mine has been so severe. Krud, we really enjoyed that shrimp.

[Isonic]

After avoiding excessive salt, all seafood and only having fresh water fish for six years I allowed myself one challenge of four prawns. Yep, I love 'em too.

There was no DH outbreak after this minor challenge. I feel ridiculously happy.

[Franceen]

My research, as well as my Dr's, has found that DH sufferers only need avoid iodine until after they have become gluten-free long enough to have controlled the DH outbreaks (and that can take a long time for some - 6 months for me). After the skin rash has subsided most people tolerate iodine as if normal. Most dietary iodine is found in the SALT contained in the foods you eat NOT in the seafood. I found that buying non-iodized salt to put on food at home was enough avoidance for me. I only avoided seafood in the very beginning when the outbreak was horrifice and I never avoided foods that come with salt (like potato chips) .

Once the DH subsided (FINALLY!) I have re-introduced regular salt and all the shellfish/seafood I want I now have no problems with iodine. I have even put it on my skin and it doesn't raise a rash like it did in the beginning.

PLEASE REMEMBER THAT IODINE IN YOUR DIET IS NECESSARY FOR YOUR THYROID - IT IS VERY VERY DANGEROUS TO COMPLETELY REMOVE IT FROM YOUR DIET. The reason salt is iodized is because way back when, people weren't getting enough iodine and ended up with "goiter" (Iodine deficiency disease or thyroid disease), so they put it in salt and the population no longer had such a high rate of goiter.

Just some trivia for you!

[Isonic]

Thanks for this - yeah I know about the thyroid needing iodine and so have never tried to eliminate it completely, just find an acceptable balance. I use organic, non-iodised sea salt and apart from the occasional restaurant meal cook all my own food from scratch. Nevertheless, when I finally convinced a doc to test my T3 and T4 instead of just my TSH, which had always shown 'normal', my tests came back showing hypothyroidism. So now I'm on 60mg alternating with 90mg Armour Thyroid daily and the T3 and T4 are within normal range.

At the moment my DH is severe and I really don't know why except for a possible retracing due to the melatonin I've been taking for five weeks. Seems ages since I was free of it.

I was told the villi need two years to repair after glutening. Six months seems like a dream.

[Franceen]

I actually had SEVERE (VERY VERY SEVERE) DH for 3.5 years prior to my own diagnosis (by research).

My Allergist was excellent with me and supported me with my research and diagnosis. I'm supposed to go for an endoscopy on Wednesday, but I'm going to cancel. I've read in too many places that all these tests will show normal after you've been gluten-free. They say you have to eat gluten for about 6 weeks prior to getting a valid test. And I'm NOT doing that!!! If gluten-free works for me than why do I have to have a medical positive test? The answer will still be gluten-free!! And gluten-free isn't like surgery or medication, it's free and non-invasive. It's JUST FOOD!

I had DH itch everywhere on my whole body - except the face and scalp. Even my palms had blisters, bumps, sores and itched horribly. The blisters broke open scabbed and then still itched so I had a career scratching scabs off and getting ugly scars. The only thing that would control the itch was 4 tabs of Ibuprophen (800 MG!) every 4 - 5 hours. That's a lot but it worked.

I had to wear long sleeves and long pants and socks all the time to avoid showing the world my hideous looking skin. I now have 2 itchy sores/scabs on my inner ankles (from heat and shoe leather) and one remaining on my shin. I still have a lot of scars. At the height of my rash, my Dr. took pictures and sent them to somewhere and they responded that it looked like it was DH for sure.

I took Dapsone for 3 months and it nearly killed me (hypersensitivity reaction and liver/hepatitis reaction!).

I stopped that and realized I had to put my mind to the gluten-free way of life.

The relief came about 6 months after I'd started being very very vigilant about being gluten-free. I had to be neurotic about it or I'd start breaking out again. I had been cheating once in a while and when I did I suffered badly.

I no longer itch everywhere. I still have a tendency to get itchy skin though - maybe from heat rash or a too tight bra or waistband or whatever. And yesterday I got a mosquito bite and nearly panicked that I was getting DH back!

I know some people take very long to rid themselves of the rash. I wonder if you're not getting some hidden gluten somehow, in something! I realized that I really couldn't have "malt flavoring" in cereal. I had convinced myself that was ok - it wasn't. And I travel a lot for my job. I used to be "not so good" at restaurants, avoiding the obvious like bread, croutons and pasta, but not worrying about sauces, etc. I found out I couldn't do that anymore either. So now I am not embarrassed in front of my colleagues and just eat what I KNOW to be safe (plain lettuce!) or go to a Celiac-friendly place like Outback.

This was an awful iteration in my life - I'm 54 and needed this lifestyle change like a hole in the head!

I feel for you - still having the rash.

Maybe I should have the T3 and T4 checked the way you did. My TSH is always normal too!

Good luck and I hope you succeed in clearing up the awful DH.