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Galia
Joined: 11 Nov 2008
Posts: 2
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 Posted: Wed Nov 12, 2008 1:27 pm Post subject: how long before DH heals? |
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| How long does it take for DH to heal for other people? I've known I had celiac for about three years and early on it seemed, when I'd get a gluten exposure the DH (I get it on my lips and around my mouth) would heal pretty rapidly. In the last month and a half I've gotten repeated exposures and have been dealing with DH for pushing ten days at a time. I've spent more time with DH than not it seems lately. So I am wondering if I am still gettin exposed OR if my system is more and more sensitive and takes longer to heal.... |
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aklap
Joined: 02 Oct 2004
Posts: 10602
Location: WI, USA
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| Posted: Wed Nov 12, 2008 1:51 pm Post subject: |
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Hi Galia,
Welcome to the board!
Sorry to hear you're having a DH flare.
It can take some time [sometimes up to 2 years] for you to "recover" of an outbreak - for all the IgA deposits to disappear from your skin.
Do the Doctors have you on Dapsone? While this is not a cure for DH, it does help with the symptoms.
Certainly gluten can cause flares, what about contact with iodine? Iodized table salt, seafood high in iodine?
http://www.enabling.org/ia/celiac/sn/spnk9808.html
| Quote: | DH is not an allergic reaction; a different mechanism is involved. It
is caused by antibodies to the gluten found in wheat, rye, and barley.
The causes of DH flares include large quantities of iodides (some
iodine is needed in the diet), kelp, shellfish, non-steroidal
anti-inflammatory agents (such as aspirin), gluten, stress, and some
cleansers.
What else looks like DH?
* DH can be misdiagnosed as psoriasis, or the patient may have both
conditions.
* Linear IgA disease--the immunofluorescence pattern is different,
but it looks and feels the same as DH to the patient.
* Allergic contact reactions.
DH is treated by adherence to a gluten-free (GF) diet. The skin
lesions can be treated with either a sulfone (Dapsone) or sulfonamide
(Sulfapyradine) drug. In about 85% of the cases, at least a year on a
strict GF diet is needed before DH is resolved. In rare cases DH
lesions clear up after only a few weeks on the GF diet.
Dapsone can have side effects, though these are not common. It can
alter blood chemistry, causing anemia. Those of Mediterranean or
African ancestry can have sudden red blood cell count drops [known as
G6PD Deficiency--Dr. Alexander]. Other complications include
tingling fingers and neurological problems.
Ideally, if the patient is on medication there would be monthly lab
tests to monitor the dosage and effect on the patient. This almost
never happens.
The GF diet takes a long time to bring DH under control because it
requires time to clear the IgA and IgG from the blood. So even if one
is on a GF diet and/or taking Dapsone, technically one has DH. Like
an alcoholic, one always has the disease.
Dr. Papp concluded his presentation by answering a few questions from
the audience.
Q: How soon after ingesting gluten or iodine will a flare occur?
A: It varies tremendously. With iodine, it usually takes several
days of consumption before a flare occurs.
Q: What effect does stress have on a DH patient?
A: It intensifies any symptoms the patient is experiencing.
Q: What effect does iodine on the skin have?
A: It really has no effect; it doesn't penetrate enough. Iodine must
be consumed to cause a DH flare.
Q: After several years on a GF diet with no flares, is iodine still a
problem?
A: No.
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http://www.dermatitisherpetiformis.org.uk/whatisdh.html
| Quote: | Gluten-free diet
It is important to appreciate that a gluten free diet may have no effect on the rash for approximately six months and sometimes, even longer. It takes this length of time before patients can start to reduce their drug requirements and approximately 2 years before they can discontinue drugs completely. It is also important to realise that these times are only achieved if the diet is absolutely strict. Even small amounts of gluten may result in patients not being able to stop their drugs.
Thus, because the drugs control the rash quickly and the gluten free diet does not, it is normal practice to start both drugs and diet together. After six months, the dose of drugs can be slowly reduced. DH is a persistent disorder (and because these patients also have CD, even if mild), the diet must be considered to be life-long. However, one improvement for patients that has occurred in the last five years is that it has been shown in DH (as in CD) that oats do not cause the rash and thus, these can be taken. Wheat, barley and rye must still be omitted. There is no evidence that gluten in flour or wheat products touching the skin can induce or exacerbate DH or CD.
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http://www.merck.com/mmhe/sec18/ch209/ch209d.html
http://autoimmune-skin-disorders.suite101.com/article.cfm/dermatitis_herpetiformis
| Quote: | Environmental Triggers
Environmental triggers include gluten, which is found in wheat, rye, and barley, and other grains that are contaminated with wheat during harvest. Gluten is also found in hydrolyzed vegetable protein, artificial colorings, malts, malt ales, hydrolyzed plant protein, monosodium glutamate, preservatives, modified food starches, vegetable gum, beer, and vinegar. Iodide in iodized salt and foods high in iodine and halide are suspected of causing disease flares. |
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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Galia
Joined: 11 Nov 2008
Posts: 2
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| Posted: Wed Nov 12, 2008 3:50 pm Post subject: |
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Thank you so much for the information you posted. I self diagnosed and have never seen a doctor for Celiac. I had read that there isn’t any cure and the only thing you can do is be on a gf diet. The other thing is I don't have any health insurance and am not really able to afford to go to a doctor without any coverage. So I’ve never been on/tried any medication for side effects.
I’ve been fairly successful with a GF diet. But this last month and a half or so I’ve really been struggling! The most frustrating part is I don’t know what it is that I’m putting in my body that’s got gluten. My lips feel like someone took a cheese grater to them and then rubbed in poison oak and habanera hot sauce. It’s been that way since last Monday. Which for me, is a long time. When it’s happened in the past, it had a short intense duration (of maybe 2 or 3 days) and then cleared up.
I’ve been moisturizing and I apply a “dermoplast” over the counter numbing agent that helps for short time periods. |
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aklap
Joined: 02 Oct 2004
Posts: 10602
Location: WI, USA
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| Posted: Wed Nov 12, 2008 8:01 pm Post subject: |
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Ahhh OK - you suspect you have CD/DH. Since I'm not sure what you've read I'll start with the basics.
CD is generally screened by getting blood tests. If those tests come back positive or the doctor feels it otherwise necessary, they'll do an endoscopy on you to take samples of your small intestine. If those samples show signs of damage [villous atrophy], they'll put on on a gluten free diet. If you show improvement on a GFD, you're handed a gold standard diagnosis.
If you DH, they'll take punch biopsies of your skin. Not of the lesion, but adjacent to it - a non affected area. If that test comes back positive, they might run a Celiac blood panel on you, but often times you are handed a gold standard diagnosis.
While it's true there is no "cure" for CD/DH, it's always a good idea to get things checked out. There could be other medical issues at play. Perhaps your lesions keep coming back because it might not be DH? I'm just thinking out loud...
I can understand not having insurance or the funds for a doctor visit/testing. Does your state offer any type of assistance at all? It sounds like you really should be check out.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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