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- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis7SkinSafe
Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer... -
- Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis7SkinSafe
I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. G... -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis7
SkinSafe
Reply to Jackie, Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷♀️ -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis7
SkinSafe
Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of ra... -
- cristiana replied to Cathijean90's topic in Introduce Yourself / Share Stuff2I’m terrified it’s too late for me😭
Hello @Cathijean90 Firstly, welcome to the forum, you have come to the right place! I know this is much easier to say than to do, but try not to worry. Whilst it is awful on so many levels that you have only just found out that Coeliac Disease is the issue behind all your problems, when you could have known 15 years ago, as Trents has said, it...
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Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed.
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By Jacki Espo · Posted
I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. Good luck. Wishing you the best. -
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Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all. I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them. Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine. I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently. I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind. I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it.
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Hello @Cathijean90 Firstly, welcome to the forum, you have come to the right place! I know this is much easier to say than to do, but try not to worry. Whilst it is awful on so many levels that you have only just found out that Coeliac Disease is the issue behind all your problems, when you could have known 15 years ago, as Trents has said, it is really not at all uncommon for people to have symptoms for years before the doctors know what they are dealing with. I was worried, too, that I'd never get better when I was first diagnosed. My nutritionist said it wasn't too late and I didn't believe her! But you know what - I am feeling so much better now. I've known of people living near me who were diagnosed in their 70s and 80s and have bounced back, and my consultant has even diagnosed someone in their 90s! So being diagnosed older is something that also happens a lot. I am now in my 50s but my first symptoms, looking back, probably started with bouts of diarrhea in my teens and terrible nauseating migraines in my 20s, with a mouth full of ulcers twice in my 30s, aura migraines starting with my first pregnancy at 34, hallucinations with both pregnancies and a pre-term baby with my second pregnancy. Weird liver function tests suggestive and iron deficiency, which sent me into a spin because my GP said it might be a type of cancer, then blood in my stools and clinical anxiety in the months prior to my diagnosis. Wow - what gluten can do to someone! But now, apart from a few minor issues with aura migraines, these issues have gone away. It has been so worth giving up gluten, people say I have good self-control but frankly, and I am sure you feel the same, knowing how sick gluten can make us, I'm not remotely interested in eating gluten ever again! I've recently discovered my GP didn't tell me my cholesterol is creeping up when he tested me three years ago. If I had known I'd have started being much more careful with my diet. I dread to think what my cholesterol levels are now, I'll have to do a test sooner or later but I do need to try to do something about it now. So I do relate with your situation. To have not had the diagnosis passed onto you is awful. But the good news is you do know now. Also, you will be taking your diet seriously, which will give you the best chance of a good recovery. Kick gluten out of your diet, get your doctor to run some tests to see if you have any vitamin deficiencies, and address those, and also see if you have any thyroid issues which occasionally affect coeliacs and can be easily treated. Build your strength up with the best whole food you can manage, and try to take one day at at time. On having children: my friend had a series of miscarriages before she was diagnosed with coeliac disease, and then when she started a gluten free diet, no more - she carried two more pregnancies to term. I am so glad you have a faith, my Christian faith has been a huge help to me on my journey. Two books on anxiety and depression too, helped, if you feel you are struggling with either or both. The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs, by Dr Steve Llardi, and At Last a Life by Paul David. Both available online. Come back to us if you have any more questions. You are not alone. Cristiana
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