I Have Just Read Some Info That Dh Can Be Caused By Other Things With No Evidence Of Celiac At All

[Glamour]

Autoimmune progesterone dermatitis (APD) is a circumstance in which the menstrual rhythm is associated with an amount of rind findings such as urticaria, eczema, angioedema, and others. The circumstance presents with a kind of rind eruptions characterized by cyclical recurrent premenstrual exacerbations payable to progesterone variation during the menstrual rhythm. Autoimmune progesterone dermatitis usually presents during early adult life, and the disease may periodically go into spontaneous remission. Exogenous progesterone (eg, in oral contraceptives containing progestational agents like norethindrone or synthetic progestogens like norgestrel or levonorgestrel) may aggravate the skin eruptions of autoimmune progesterone dermatitis. Some women with chronic urticaria experience cyclical exacerbations of their skin condition corresponding with the menstrual cycle, and it is possible that progesterone plays a role in this process.

Severity of symptoms can change from almost imperceptible to anaphylactic in nature, and symptoms can be liberal. There are no particular histological features on biopsy in autoimmune progesterone dermatitis. The age of onslaught is varying, with the earliest age reported at menarche. The symptoms of APD correlate with progesterone levels during the luteal phase of the menstrual cycle. Symptoms may first appear, improve, or worsen during pregnancy and the peripartum period. In addition, autoimmune progesterone dermatitis during pregnancy has been associated with spontaneous abortions. This disease may become worse during pregnancy. Autoimmune progesterone dermatitis must be differentiated from perimenstrual flares of skin diseases such as acne, dermatitis herpetiformis, erythema multiforme, lichen planus, lupus erythematosus, psoriasis and estrogen dermatitis.

The diagnosis of Autoimmune progesterone dermatitis requires a proper clinical story accompanied by an intradermal injection examination with progesterone. Autoimmune progesterone dermatitis is normally impervious to traditional therapy such as antihistamines. The use of systemic glucocorticoids, usually in high doses, has been reported to control the cutaneous lesions of APD is some studies, but not in others. Oral contraceptives are often tried as initial therapy, but have had limited success, possibly due to the fact that virtually all oral contraceptives have a progesterone component. Conjugated estrogens have also been used in the treatment of autoimmune progesterone dermatitis. Tamoxifen, a nonsteroidal antiestrogen agent, may be effective in some patients but may cause amenorrhea. In some cases, the eruptions often settle spontaneously after a period of successful treatment.

Digg!

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[Glamour]

Also seems Thyroid issues, perimenopause and other female hormonal imbalances, and in some cases general autoimmune diseases...all with no gluten intolerance or celiac disease present.

[Lisa]

DH is closely associated with Celiac Disease, but it's not exclusive to Celiac.

[Glamour]

Dermatitis Herpetiformis

Skin Changes in Celiac, Thyroid, Sjogren's, Arthritis, and More

[Glamour]

Scary, because what if going gluten-free does not help it. What treatment would be available for non-celiac DH?

[Fiddle-Faddle]

Glamour, the author of that article didn't mention ruling out celiac disease/gluten intolerance, or wheat allergy, either, for that matter. Since celiac disease has been shown to disrupt menstrual cycles, it could certainly be a factor in this "autoimmune progesterone dermatitis." It could even be the cause.

Many of us here on this board have had a variety of diagnoses of all kinds of autoimmune disorders that turned out to have been directly triggered by gluten.

[ravenwoodglass]

  Fiddle-Faddle said:

Glamour, the author of that article didn't mention ruling out celiac disease/gluten intolerance, or wheat allergy, either, for that matter. Since celiac disease has been shown to disrupt menstrual cycles, it could certainly be a factor in this "autoimmune progesterone dermatitis." It could even be the cause.

Many of us here on this board have had a variety of diagnoses of all kinds of autoimmune disorders that turned out to have been directly triggered by gluten.

Exactly what I was going to say.

[momxyz]

all I know is that my rash didn't start to heal until I eliminated gluten from my diet....

[ChemistMama]

  Quote

DH is closely associated with Celiac Disease, but it's not exclusive to Celiac.

Totally wrong. The title of this thread is misleading...dermatitis herpetiformis IS necessarily caused by gluten. That is the definition of DH. If something else is causing it is not DH, but another type of dermatitis. IN medical terms, gluten is a 'necessary cause' of DH. It has to be there for the DH symptoms to appear.

What the article posted is referring to is the observation that the onset of DH has been caused by people taking various drugs, like progesterone. This is called a 'precipitating cause'; it's a trigger that brings on the disease. Think of it like this: there are lots of stories on the 'net about people getting celiac after a major surgery or car accident or after having a baby; those things really can mess up your body physically. When they heal or have the baby, the celiac doesn't go away; the event is the precipitating cause of celiac. The same goes for DH.

What is confusing is that most people with DH never have celiac symptoms, which makes them think they don't have celiac disease. However, the same mechanism is taking place: when a celiac eats gluten, the antibodies start destroying their intestines. In DH, those same antibodies attack your skin. I like to call DH "celiac's just-as-evil-twin". That is why if you have DH, the new celiac drug that is in clinical tests (AT-1001) will work for you, since it acts against those same celiac antibodies (this is straight from a Q&A I had with Dr. Fasano, the Dr. working on the drug).

Here's a DH link with a reference to progesterone...

Open Original Shared Link

...and here's a link to the many different medical definitions of 'cause' :

Open Original Shared Link

[Lisa]

Open Original Shared Link

Dermatitis herpetiformis is an autoimmune disorder characterized by chronic, intensely pruritic (itchy) symmetric groups of vesicles, papules, and wheals (hives), that may occur on the elbows, knees, arms, legs, shoulders, scalp, buttocks, neck, and face. Dermatitis herpetiformis, which is also known as Duhrings’s disease, Brocq-During disease, and dermatitis multiformis, usually occurs in people with celiac disease and well as milder forms of gluten sensitivity, and less often, in people with autoimmune thyroid disorders.

Dermatitis herpetiformis has also been reported to occur in people with vitiligo, type I diabetes, Sjogren’s syndrome, dermatomyositis, and rheumatoid arthritis.

Read more: Open Original Shared Link

It has always been my understanding that DH can be present in other autoimmune issues, to include Celiac, but not exclusive too. Celiac Disease takes place in the small intestines and DH is a manifestation of a gluten response on the skin. Both can be controlled by a gluten free diet, but yet, they are not the same.

[Swimmr]

  Glamour said:

Often, dapsone is used initially to reduce inflammation and symptoms are controlled, often resolving after 18 months of a gluten-free diet. However, symptoms often return over time when gluten is resumed.

Stands to reason that someone wouldn't go back to eating gluten if they were free of DH while gluten-free...DUH

[ravenwoodglass]

  Lisa said:

Celiac Disease takes place in the small intestines and DH is a manifestation of a gluten response on the skin. Both can be controlled by a gluten free diet, but yet, they are not the same.

I do have to disagree with this. Celiac antibodies can attack pretty much any organ of the body. While it is true that some with DH will not have gut symptoms they do still have celiac. In additon at times the gut symptoms may be mild for awhile or may present in ways that are not just the D that most of us think of. It wasn't a coincedence that when I developed DH in childhood I also developed depressive episodes and constipation along with a stomach that growled constantly. It wasn't until after I went gluten free that I realized that gluten was involved with much more than my by then constant D.

[Lisa]

  ravenwood glass said:

Celiac antibodies can attack pretty much any organ of the body.

I agree 100%, a gluten induced autoimmune response can be found in many parts of the body. But when it occurs in the small intestines, it's called Celiac. DH is a gluten induced autoimmune response in the skin, Cerebral Ataxia can effect the muscles and the brain. I'm just saying that where is manifests itself, carries a different name and reference.

I'm just saying that those with Celiac do not necessarily have DH and those with DH do not necessarily have Celiac. Both are controlled by a gluten free diet, but that does not make them the same, in my opinion.

[ChemistMama]

  Lisa said:

Dermatitis herpetiformis is an autoimmune disorder characterized by chronic, intensely pruritic (itchy) symmetric groups of vesicles, papules, and wheals (hives), that may occur on the elbows, knees, arms, legs, shoulders, scalp, buttocks, neck, and face. Dermatitis herpetiformis, which is also known as Duhrings

[ravenwoodglass]

  Lisa said:

I'm just saying that those with Celiac do not necessarily have DH and those with DH do not necessarily have Celiac. Both are controlled by a gluten free diet, but that does not make them the same, in my opinion.

And you are entitled to your opinion. Please do check the link provided by the previous poster and also check out what the NIH has to say about it here

Open Original Shared Link

"Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease."

It is not just an opinion of mine that folks with DH are celiac. It is also the findings of the NIH as well as other medical research.

[Lisa]

Open Original Shared Link

Skin biopsies performed on the affected skin are nearly always positive for IgA deposition.2 Blood tests for antiendomysial or anti-tissue transglutaminase antibodies may also suggest celiac disease.

This NIH statement does not say will also suggest celiac. It says it may suggest. That to me does not mean a definitive diagnosis for Celiac. Is it 100% conclusive that if one has DH, they also have Celiac Disease?

I'm not sure. But, I am sure that other may know more.

[Fiddle-Faddle]

  Lisa said:

http://autoimmune-skin-. Dermatitis herpetiformis, which is also known as Duhrings’s disease, Brocq-During disease, and dermatitis multiformis, usually occurs in people with celiac disease and well as milder forms of gluten sensitivity, and less often, in people with autoimmune thyroid disorders.

Dermatitis herpetiformis has also been reported to occur in people with vitiligo, type I diabetes, Sjogren’s syndrome, dermatomyositis, and rheumatoid arthritis.

Read more: Open Original Shared Link

It has always been my understanding that DH can be present in other autoimmune issues, to include Celiac, but not exclusive too. Celiac Disease takes place in the small intestines and DH is a manifestation of a gluten response on the skin. Both can be controlled by a gluten free diet, but yet, they are not the same.

Every one of the autoimmune issues named above has been closely linked with celiac disease, and in many cases, a causal relationship has been proven. That isn't a peer-reviewed study above, but an article by a medical writer, who seems completely unaware of the relationship (explained in many places here on celiac.com) between celiac disease and autoimmune thyroid disease. In addition, there are published studies on the relationship between each of these diseases and celiac.

Open Original Shared Link

Open Original Shared Link

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Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Jestgar]

Here ya go:

Open Original Shared Link

Associated with chronic inflammation due to tonsillitis. Suggests that the condition is closely linked to chronic inflammation which is most commonly to be found in autoimmune disease, but can occur in other conditions.

[Glamour]

I have to go with Lisa, In almost every article I have read, (and I did not post them all to this site), the words USUALLY, CAN, OFTEN, MAY are used in conjuction with linking DH to CELIAC and/or gluten intolerance.

The article from the medical writer, may not be definitive (but I am sure she researched the topic). I have found more than one place where they have said NO celiac or gluten intolerance was found, while the DH was present. I read for hours on this topic.

I would love to know that without any doubt DH ALWAYS MEANS Celiac/gluten intolerance. I really want that magic, definitve, cure of DH, even if it is the bitter pill, of giving up all gluten for life. Of course I realize that I could have something else besides DH and the garden variety of Eczema/Psoraisis. But for 3 years no treatments for those issues has been even mildly effective.

I want to know that eventually I will be rid of DH by following gluten-free protocol. And that is how I will proceed. I don't want to hear that the possible prognosis and "cure" for DH just might be a total mystery in some cases, namely my case. I have been going gluten free for about a month, and for the last few days my rashes are worse than ever. I have read about being patient, and that length of recovery varies greatly. I don't want to put all my faith in the gluten-free diet, if I need to be looking at additional medical care for some other mystery condition that does not follow under the "usually" celiac connection.

Other than bad allergies, anemia (seems controllable with diet) and occasional asthma, I don't have other autoimmune issues. I am pre-menopausal.

[Glamour]

Jestgar, read the article. Weird.

[Lisa]

I am afraid Glamour, that you would be doing yourself a disservice by not trying the diet 100%, in conjunctions with medicine, to control your DH. It take time and dedication. And eventually, you will find it's much better than a magic pill.

If you are having trouble with the diet, we can help you along. It's hard, but it does get easier.

[Glamour]

Oh no, Lisa, do not misunderstand...I am going to follow the diet, and have been, to the best of my short education on gluten-free.

I feel like there is a large percentage of DH cases that ARE related to celiac. Probably most.

I also think I was having to much gluten in my diet, regardless of DH. Just feeling better mentally and losing weight is worth a lot.

I would just hate to stress over this diet for 6 months and longer, to find out I am not celiac or gluten intolerant at all. Or that my rash is not DH (I would bet money it is). Gluten also affects most other skin disorders, as well as allergies, anyway.

[ravenwoodglass]

  Glamour said:

I would just hate to stress over this diet for 6 months and longer, to find out I am not celiac or gluten intolerant at all. Or that my rash is not DH (I would bet money it is). Gluten also affects most other skin disorders, as well as allergies, anyway.

It does take a while for the antibodies to leave the skin. We also can become more sensitive to small amounts of gluten which would cause the outbreaks to get worse at first. When I was first diagnosed my DH was severe and when glutened it would come right back as the first symptom. Now after 7 years gluten-free DH is the last symptom to appear on the rare occasions that I get glutened and even then the outbreak is just one or two little blisters not the huge clusters and it heals much more quickly.

Have you had the area's next to your lesions biopsied to be sure it is DH? Although as you pointed out there are a lot of skin issues associated with celiac it might help if you knew for sure it was DH. The only 'cure' for DH is the gluten free diet although some doctors prescribe dapsone not all of us take it and it will clear without dapsone but for some it takes a bit longer.

Have you heard of Enterolab? They do stool testing for antibodies to gluten and can also do a gene panel. While they don't diagnose celiac they can tell you if your body is forming antibodies to gluten. Perhaps that might help you figure it out.

[Swimmr]

  Lisa said:

I agree 100%, a gluten induced autoimmune response can be found in many parts of the body. But when it occurs in the small intestines, it's called Celiac. DH is a gluten induced autoimmune response in the skin, Cerebral Ataxia can effect the muscles and the brain. I'm just saying that where is manifests itself, carries a different name and reference.

I'm just saying that those with Celiac do not necessarily have DH and those with DH do not necessarily have Celiac. Both are controlled by a gluten free diet, but that does not make them the same, in my opinion.

Ok so DH, I usually see it when I eat anything with wheat OR sometimes if I have a salted item, ie bacon, chips...which I limit frequently. But if I scarf down a piece of bread two days later my back and shoulders and butt have several spots. So it could be the salt in the bread OR it's from the wheat. I believe you can get DH when you ingest any gluten and not from just salt.

Is the DH a reaction from anything with gluten in it or is it SPECIFICALLY a trigger from the iodine? If it's just a trigger from the iodine, then it doesn't make iodine necessarily "bad" like gluten, right? I've seen articles and info and I keep hearing that it comes from iodine.

I've also heard that if you have DH you have Celiac, but if you don't have DH you just have an intolerance, that it comes hand in hand with only Celiac.

Lucky me, I have the intolerance AND DH...and plan to eventually confirm this with tests. Possible to have all manifestations of celiac (ataxia, gut reaction and dh?)

[Jestgar]

I think, just as with all forms of gluten intolerance, testing is in its infancy.

I found several articles that showed IgA complexed with gut proteins as a major component of the DH lesions. This means that somehow proteins from your gut are getting into the rest of your body. The most well known way for this to happen is from gluten. This suggests that if you are sensitive to gluten, it can cause your gut to leak, regardless of visible villi damage.

Once your body has learned to do something (make antibodies against gluten, gliadin, gut proteins), it doesn't un-learn this. You will likely always have these antibodies, just not necessarily at levels high enough to test with current methods.

I don't know what the role of iodine is in the IgA reaction. It could increase the inflammation around tiny deposits and make them active. It could facilitate complexing of low levels of IgA/gut proteins that wouldn't normally deposit. It could somehow activate the cells that are primed for the igA-anti-gut antibodies.

If it helps, almost all of the articles I glanced at said that I gluten free diet was the first change they suggested. If your gut is leaking proteins, you have to figure out how to make that stop, and the best way to approach that is by starting with the most likely culprit.