Remission?

[lil'chefy]

So, I am Gluten-Free for only 24 hours... That said I have had a diagnosis of DH for 22 years. I am 35. I have successfully controlled my DH symptoms with 100mg. of Dapsone for pretty much the whole time. I have been Dapsone free and eating a regular diet for at least 6 mos., no symptoms. Under what criteria could I say that I was in a successful remission, with no direct ill effects on my body that I am unaware of? All my docs say: "Enjoy it!" I am really trying to learn about this. Any info would be useful. I am usually anemic when blood tested. I display ADHD symptoms, tons of anxiety, tightish finger joints sometimes. I don't know if this is related, but also constantly get yeast infections, terible gas from dairy products, crave sugar sugar sugar sugar.

[itchy]

Sounds like a complicated situation.

But if you have DH you also have celiac disease, so you shouldn't eat anything with gluten, which it sounds like you are addressing.

It is fortunate that you are now mostly symptom free, but personally I would be expecting that it wouldn't last, and also that you have real damage to your GI systems that may be mostly undetected. The fact that you have anemia and trouble with processing milk suggests this as a possibility.

Many of us coeliac can't tolerate milk, especially raw milk, but this is said to improve with a gluten free diet.

[IrishHeart]

Hon, if you have DH, you have Celiac Disease. You need to be gluten free for life.

Do you mean you went OFF a gluten-free diet for 6 months to see what would happen?

Were you strictly gluten free before that?

Why would you go back on gluten, then? I'm not sure I understand what you are asking.

and..you have all those symptoms you listed still? (anemia, yeast, tons of anxiety, etc)

I am not sure how you consider this a remission if you have all those celiac symptoms.

Something's not right.

[Skylark]

You can make all the threads you want, but we will all tell you that you are still celiac and need to be off gluten. My answer in your other thread still applies.

[IrishHeart]

You can make all the threads you want, but we will all tell you that you are still celiac and need to be off gluten. My answer in your other thread still applies.

Oh, I see, we have already covered this topic....thanks, Skylark.

People with DH have Celiac Disease.

Period.

You need to remain on a gluten-free diet.

From the Celiac Disease Center at Columbia University:

Dermatitis herpetiformis (DH) is the skin manifestation of celiac disease. All patients with DH have celiac disease. It is an intensely itchy rash that usually occurs in the same place for each patient. This may be on the hands or fingers, forearms, buttocks or scalp or anywhere on the body. The rash typically consists of very itchy, small red dots that may develop into blisters or pimples. They are intensely itchy.

The diagnosis is clinical and can be confirmed by biopsy. The biopsy, for best results, needs to be taken from just adjacent to a lesion. The biopsy needs to have special immunofluorescence tests performed on it.

Treatment is first and foremost a gluten-free diet. This results in resolution of the lesions and will prevent new lesions. The diet also will prevent the development of lymphoma, that occurs at an increased rate as in patients with celiac disease. Drugs (Dapsone) may help patients recover from a severe episode, but are not a substitute for the diet. Patients with DH are very sensitive to small amounts of gluten.

[lil'chefy]

For the record, I have only very sporadically been on a Gluten-Free diet, as my physicians told me it was too expensive and complicated. They recommended the tanning bed and dapsone to deal with DH. Now I have several autoimmune diseases and sun damage!

[lil'chefy]

Not trying to direspect anyone's opinion, and yes, I'd rather you say that I am fine, but arguably many celiac symptoms are also symptoms of so many other disorders. I am frustrated, and depressed about this diagnosis. Don't ask, but for some ridiculous reason, I figured all this time I could just ignore my ailment. For some reason I became a certified pastry chef, le cordon bleu. I have always just hoped so much that somehow it was a misdiagnosis. Since my mother has been sooooo sick, I have been reconsidering. It is also misleading when you ask the 3 physicians who care for you and are aware of your health record, if you should stop eating gluten even though you are not currently displaying symptoms: They all say enjoy your life. Stop worrying so much!

[Skylark]

You are trying the diet so you will find out soon enough. In a few months (the damage takes time to heal) your anemia should resolve, the joint pain ease, the anxiety start to fade into the distance, and you should feel much better. If you are strictly gluten-free for 4-6 months and nothing changes at all then you know gluten isn't the issue. Do plan on giving the trial diet 4-6 months, because it can take time to heal the autoimmune damage. Then you have to absorb all the nutrients you need and rebuild. I genuinely hope that you feel better, as I've experienced that celiac anxiety and I know how awful it can be. You may find that it's life-changing for your daughter as well. By the way, you may want to take some extra B-complex and fish oil (3 capsules/day). They may help your anxiety once you really start absorbing them.

If you are a certified pastry chef, you have all the cooking skills you could possibly need to go gluten-free! Imagine how hard it is for someone who hasn't the faintest idea how to cook. This is the blog of a French pastry chef who went gluten-free to treat her Meniere's disease. Perhaps you will find some inspiration. Open Original Shared Link For example, here is how you make gluten-free puff pastry. Open Original Shared Link2010/04/recipe-gluten-free-puff-pastry.html

Another Cordon Bleu chef who is gluten-free.

Open Original Shared Link

And one who runs a bakery business that caters to people with allergies and intolerances.

Open Original Shared Link

We NEED talented chefs like you working with gluten-free flours and finding recipes that work. You have the potential to not only improve your own health, but to enrich the lives of the rest of us either with recipes or with made-to-order gluten-free baked goods in your town. Do you know we had one poster who got diagnosed with celiac just before her wedding? She was thrilled to be able to find a chef who could make her a good gluten-free wedding cake.

[Skylark]

The yeast is related by the way. Part of what causes autoimmunity is when your damaged intestine lets food proteins across for your immune system to react with. Certain things like milk can trick the immune system, and certain foods like legumes and potatoes worsen the problem. Often the bacterial balance isn't right either, and that adds to the leakiness. Yeast overgrowth and severe anxiety is a strong sign that you are lacking a healthy mix of bacteria.

You may want to look at a diet like GAPS that is designed to repopulate your intestine with healthy bacteria and lessen anxiety, depression, and autoimmunity. Open Original Shared Link I'm doing a modified GAPS diet where I use Cordain's Paleo diet recommendations for healthy fats and oils and it's helping me feel better.

[ciamarie]

You've already had some wonderful replies and advice, but as a person with DH I thought I'd throw in my history, in case it helps you become convinced.

Now that I know a bit about DH, I can look back and realize that I've had at least 3 outbreaks over the last 30 years or so that sort of came & went. The first couple of times I thought it was a reaction to suntan lotion or perhaps a sunburn, due to the small blisters. But it was itchy and a sunburn doesn't usually itch until it's healing, right? At any rate, those didn't stick around long enough for me to see a Dr. about it. Then about 12-13 or so years ago when I was in my late 30's, I had an outbreak on my face that I thought was some strange adult acne on my face. I got it somewhat under control with proactive solution, but then due to feeling anxiety after eating a whole wheat bagel one day, I realized I had a problem with wheat. I gave it up for a week as a trial, and felt a difference in a few days (less fatigue and brain fog, knees didn't hurt so much), so I mostly stopped eating wheat but switched to spelt after reading the blood type diet book. And finally the DH on my face went away, but would show signs of returning if I ate wheat-y food more than very rarely.

But I've had it in my ears and behind my knees for the last 2 years, and only recently discovered it was a form of celiac / gluten intolerance. I discovered it after reading a book called 'Healthier without Wheat' and also discovered I had a ton of the other symptoms. I had even in the couple months prior had a couple of times after eating dinner, where I had excruciating gut-twisting pain. Before going (mostly) wheat-free I'd also had heart-burn issues. So, all of that is to say that just because the DH is in 'remission' doesn't mean the other symptoms aren't also pointing to celiac disease! I wish I'd have known this years ago, I'm now in my 6th week of being gluten-free.

I have lots to learn still, and it's really tough to look it in the eyes and realize that the only real treatment for DH / Celiac is a gluten-free diet. If you don't now have active DH, consider it a blessing, because mine is definitely improving but not totally gone yet.

[IrishHeart]

For the record, I have only very sporadically been on a Gluten-Free diet, as my physicians told me it was too expensive and complicated. They recommended the tanning bed and dapsone to deal with DH. Now I have several autoimmune diseases and sun damage!

But, hon, they were so wrong. It's criminal that you were given that information. A gluten-free diet is neither expensive nor that complicated.

But honestly, if you have read anything about celiac Disease, certainly you saw that ALL PEOPLE WITH DH have Celiac?

A physician recommended a TANNING BED?? What idiot (yes, I said idiot) would do that?

This is so wrong...(but my own health odyssey is just as bizarre) but there is no question that you have Celiac and you absolutely need to be on a strict gluten-free diet.

Best wishes.

[IrishHeart]

Not trying to direspect anyone's opinion, and yes, I'd rather you say that I am fine, but arguably many celiac symptoms are also symptoms of so many other disorders. I am frustrated, and depressed about this diagnosis. Don't ask, but for some ridiculous reason, I figured all this time I could just ignore my ailment.

Maybe they are symptoms of other disorders, but if you have DH, you have Celiac--so, why wouldn't they be RELATED??? As long as you continue to ingest gluten, you continue the autoimmune response in your body. The only way to find out is to STOP consuming gluten!

Denial will not change this fact. I'm sorry, hon, but it's time to face it. The doctors misled you ---which is a form of malpractice, in my humble opinion----but you also know what you need to do, otherwise you would not be saying what you just said "all this time I could just ignore" it.

If I were you, I'd print off information about DH and how anyone with DH certainly has Celiac and bring it to these "doctors". They are so incredibly ignorant about celiac and they have, in essence, kept you ill for 22 years, telling you it was not necessary to avoid gluten.

As someone who has experienced the gluten-related anxiety myself (as well as dozens of other horrible symptoms) I can honestly tell you---you will be better OFF gluten.

Good luck, hon--and as Skylark has said--you already have mad skills in the kitchen. You can do this!

[itchy]

It's my understanding that if Dapsone cures your skin problem, that is proof that you have DH.

If you have DH, you are coeliac.

If you are coeliac, gluten will be causing you damage, seen or unseen.

Most of us coeliacs have quite a bit of experience with uninformed physicians. It's better to become self informed from reliable sources. It also seems to be true that sometimes the symptoms take a bit of a holiday; that doesn't mean we don't have the disease.

Gluten free food is little more expensive than regular food, providing you don't try to substitute your favourite gluten-containing foods with expensive gluten free manufactured substitutes. Just eat basic food that is naturally gluten free, and you can eat quite cheaply.

[squirmingitch]

Your doctors are quacks. THERE I said it! I saw somewhere where you said you haven't yet told your doc you're off the Dapsone. Gee, if you go gluten free then the doc knows you won't need Dapsone & there goes that doctor's money from you every ? months for your check up & to get a new script. Hmmmmmm.......

Read all the threads here in the dh forum. You will read everything you need to fully understand how this is connected.

Go gluten free for good. Believe me, you don't want the dh to return on you. What a total nightmare!

And get your babies gluten free. It certainly sounds like the one already has gluten problems.

You've already endured so very much. Take that same strength that got you through that & apply it to looking this squarely in the face. No burying your head in the sand anymore. You ARE strong. Now BE strong.

Then go cook & make some delightful recipes for us! Some that don't have millet in them please. The stuff tastes like bird seed no matter how you slice it. Smells like it too.

Wishing you all the best.

[Roda]

Your rash right now may be gone but your other symptoms are related. ALL your doctors have given you MISGUIDED advice!! You have celiac, and nothing is going to change that fact. You've had 3 positive biopsies for DH and that is a diagnosis of celiac. If you had gotten proper information from the start, you may not have not went down the road of several additional autoimmune diseases. Do yourself a favor and go gluten free. If you have children it would be wise to get them tested too and your mother.

[lil'chefy]

Your rash right now may be gone but your other symptoms are related. ALL your doctors have given you MISGUIDED advice!! You have celiac, and nothing is going to change that fact. You've had 3 positive biopsies for DH and that is a diagnosis of celiac. If you had gotten proper information from the start, you may not have not went down the road of several additional autoimmune diseases. Do yourself a favor and go gluten free. If you have children it would be wise to get them tested too and your mother.

My mother has been in and out of the endoscopy, colonoscopy, GI tables. My grandmother has trouble also, I believe. My mom just had some kind of endocrine tumor removed from her stomach. She bloats much worse than I could ever dream of. She bloats so bad that she starts out every morning a size 10 and goes to sleep a size 14-16. She, like me has been tested for EVERYTHING! She has been tested and diagnosed with many things, but her blood tests are neg for celiac. She will have her 7th endoscopy on December 23rd. They are aggresively looking for celiac disease this time!

[mushroom]

She may not have celiac disease. She may be gluten intolerant instead, and will never pass any celiac test. For every celiac walking around out there, it has been estimated that there are five or six gluten intolerants. Celiac is not the beginning nor the end of gluten problems. Gluten sensitivity outside of celiac disease is really prevalent.

[Roda]

She may not have celiac disease. She may be gluten intolerant instead, and will never pass any celiac test. For every celiac walking around out there, it has been estimated that there are five or six gluten intolerants. Celiac is not the beginning nor the end of gluten problems. Gluten sensitivity outside of celiac disease is really prevalent.

I agree. This is where my older boy falls. Has been negative 4 different times on blood work over the past three years. He had a negative scope/biopsy just in Aug. He has had great results over the last three months gluten free.

[Roda]

My mother has been in and out of the endoscopy, colonoscopy, GI tables. My grandmother has trouble also, I believe. My mom just had some kind of endocrine tumor removed from her stomach. She bloats much worse than I could ever dream of. She bloats so bad that she starts out every morning a size 10 and goes to sleep a size 14-16. She, like me has been tested for EVERYTHING! She has been tested and diagnosed with many things, but her blood tests are neg for celiac. She will have her 7th endoscopy on December 23rd. They are aggresively looking for celiac disease this time!

You mother needs to request at least 8-11 biopsy samples to be taken in the small bowel for the celiac biopsy. Even then it is possible it could be negative. Sounds like she would benefit from a gluten free diet and despite the biopsy results I would encourage her to give it a try.

[lil'chefy]

You mother needs to request at least 8-11 biopsy samples to be taken in the small bowel for the celiac biopsy. Even then it is possible it could be negative. Sounds like she would benefit from a gluten free diet and despite the biopsy results I would encourage her to give it a try.

Tha, by the way all of you for your information, advice and support. I am currently trying diligently to talk my Mom into Gluten-Free. She has profound osteoporosis and is deficient in all vitamins, especially vitamins b and d. She was diagnosed with Barrett's esophogus, has terrible heartburn (as do I), has (sounds weird and disgusting) whitish poop, and a head to toe candida infection often. We both profoundly CRAVE sugar. Maybe its unrelated, but I thought that you all may know.

Does anyone know of any Gluten-Free veggie burgers?

Slipped up and had gluten yesterday, but back on the Gluten-Free horse today. I went out and purchased some stuff to help me make it through this rough patch. Glutino pretzels are great! Better that the real ones.

My husband is willing to make our home Gluten-Free to support myself and my daughter! Yay!

[lil'chefy]

Tha, by the way all of you for your information, advice and support. I am currently trying diligently to talk my Mom into Gluten-Free. She has profound osteoporosis and is deficient in all vitamins, especially vitamins b and d. She was diagnosed with Barrett's esophogus, has terrible heartburn (as do I), has (sounds weird and disgusting) whitish poop, and a head to toe candida infection often. We both profoundly CRAVE sugar. Maybe its unrelated, but I thought that you all may know.

Does anyone know of any Gluten-Free veggie burgers?

Slipped up and had gluten yesterday, but back on the Gluten-Free horse today. I went out and purchased some stuff to help me make it through this rough patch. Glutino pretzels are great! Better that the real ones.

My husband is willing to make our home Gluten-Free to support myself and my daughter! Yay!

That first line of my last post was supposed to say thank you, not sure where those letters went:-)

[lil'chefy]

That first line of my last post was supposed to say thank you, not sure where those letters went:-)

One more thing, could elevated triglycerides have anything to do with gluten problems? (my Mom)

[IrishHeart]

Gluten intolerance can cause over 300 symptoms. Yes, digestive issues, candida, elevated triglycerides, osteoporosis. ALL related.

Hon, you REALLY need to read some information about Celiac Disease (which you certainly have) and gluten intolerance (which is likely your Mom's problem as well) so you understand how this can affect every body system.

Once the gut is compromised, it becomes leaky and toxins pour into the body.

You could keep giving us symptoms every post and most of us will say "YES"! it's related, because really, they are all associated with it.

Here, this may be helpful:

Open Original Shared Link

At my urging, my friend printed this list off, circled every symptom and disorder she had --even if it was in the past---and brought it to her doctor. (She had circled about 45 things by the time she was done.) I KNEW she was at least gluten intolerant, if not a celiac from her chronic yeast infections to her insomnia, etc. Yes, that is what it was. She's gluten-free and feeling better every day after a lifetime of poor health and musculoskeletal pain. I myself had DOZENS of symptoms from celiac.

You guys really need to drop the gluten ASAP. All of it.

Just my humble opinion. Best wishes to you!

[lil'chefy]

Reading that list of symptoms has truly been a life altering experience.

[IrishHeart]

Reading that list of symptoms has truly been a life altering experience.

Eye-opening wasn't it? Explained my list of 75+ symptoms that made my life an inexplicable hell (I am not kidding) As they slowly resolve, it all makes sense. I still have a long way to go.

In her book, she explains HOW those symptoms evolve from malabsorption and nutritional and vitamin deficiencies and the relationship to other autoimmune disorders, including DH.

This is why someone with celiac has to stop the autoimmune attack by avoiding gluten.

No gluten. It's the only way.

Best wishes!