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ItchyAbby last won the day on April 2 2014

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About ItchyAbby

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    Gardening (for pleasure and for my work), cooking, reading, running, knitting, sewing, hiking, meditation

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  1. Hi all,

    I have a bottle of E&J VSOP Superior reserve brandy that I was going to use in a recipe. I called the company and asked if it was gluten free, if they used any caramel colors or flours on their barrels. They confirmed that it was gluten free. But then I did a search on Celiac.com and found a list of alcohols that said "AVOID VSOP!" Sooo, who do I believe? What to do?

  2. You don't sound melodramatic at all! I was terrified, too. It's ok to be scared. You don't know what's going on with your body yet. I second the food journal rec. I kept one for 9 months and it was invaluable. Focus on simple WHOLE foods. These are the most nutrient dense and that's what your body needs to heal.


    And the people who don't believe you...well, they aren't living in your body. You do not owe them an explanation at all and don't let their doubt drown out your gut instincts. Many people are scared by the idea of dramatic dietary changes in addition to being ignorant of this issue. Once you start getting better, some of them will come around. (Some will never, but that is not your problem!) All of my tests were negative, but I KNEW that I had DH. I had doctors tell me that there was no way I had DH (their reasons were not sound, but I will not go into that here) I finally found a doctor that supported me and believed me. Don't be afraid to keep looking for a doctor if the first one or two don't seem like a fit.


    Stay strong! And sleep as much as you need. Your body needs it.

  3. Hello and welcome!

    Good for you for playing your own detective when it comes to your health! That will serve you well. Stay curious and be willing to try new things that might make you feel better. Unfortunately doctors don't always know best, especially when it comes to the spectrum of gluten intolerance. (That does nto mean you should not see one, just try to find one that is supportive of your findings about your body.)


    It's really hard to say how long your symptoms will take to subside. We are all so different! But if you eat nutrient-dense whole foods, rest as needed and stay hydrated, then you will be giving your body what it needs to heal. The improvement you have already seen is a good sign! For now I would say the best thing is to focus on improving your digestion/healing your gut, to make sure you are accessing the nutrition in the foods you eat. And, like Cooties says above, stay gluten-free for at least 2 months before you even think about re-introducing gluten. But know that if you should want an official dx you will need to do a gluten challenge.


    Pale or clay colored stools can be a sign of biliary insufficiency (you are not producing/releasing enough bile and therefore not digesting fats properly, as nvsmom said above). Are you now or have you been following a low fat diet? That can cause the bile to become thick and viscous from lack of use, when it is supposed to be thin and watery. You could try taking bile salts, or try a raw beet slaw as a condiment daily, especially with meals that have some fat. Grate a raw beet, a raw carrot and a green apple, toss with lemon juice and olive oil. (Beet is a great bile thinner)


    As far as the heartburn, this is often a sign of insufficient stomach acid (contrary to popular belief that it is from too much HCl). You might try taking a little apple cider vinegar in warm water before meals. This will help get your gastric juices flowing and that sets the stage for proper digestion and optimal nutrient absorption. Some people use digestive enzymes, too. Make sure you chew your food very well and eat when you are relaxed, not stressed.


    I hope this helps!

  4. Now that I think about it, my WORST flare happened after I went strictly gluten free. The last day I ate gluten was May 31, 2013. On about June 8th the rash spread for the first time to my tummy, and all the other areas were redder and angrier than ever before. Pure hell! About a month after that was when I got a new little spot on my inner thigh. Was it cc from my newly-gluten-free kitchen? Or was it just the time it took for the antibodies to make their presence known? I'll never know. This rash is the most mysterious, fascinating and infuriating thing I have ever encountered. A year does seem like a long time if you have been very strictly gluten-free. But if there is ANY bit of contamination, that may be all it takes for the rash to appear. (But sadly, is likely not enough to get you a positive on a blood test)


    So, two things: You know gluten is bad for you. If you need to a dx then you will have to do a gluten challenge. Only you can decide if you are up for that. And, you need a new doctor, one who will be supportive of you and what you know to be true about your own body, dx or no.

  5. I also have IBS and anxiety and DH. The IBS cleared up almost immediately after going gluten-free.  Someone on here once told me "IBS is NOT a diagnosis, it's a symptom". Basically, when a doc says you have IBS, they are just telling you what you already know! The anxiety still waxes and wanes, but is much better. And the $%&#ing rash is still with me, but MUCH, MUCH better.


    To answer your questions:

    1 - Yes, the test most definitely could have been inaccurate. If you want to get tested again, you will have to eat something gluten every day for a few months, and even then you may get a negative. How important is a dx to you? You can read more about the "gluten challenge" here: http://www.cureceliacdisease.org/archives/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease


    2 - Is your household gluten free? How strict have you been with being gluten free? I am not questioning your intentions, mind you, but just trying to get an idea of the potential for getting cross-contaminated and possibly making mistakes. My DH showed up after I cut way back on gluten. This was 4.5 years ago when I started seeing my boyfriend. He was/is gluten intolerant so I just ate what he could eat, and cooked what he could eat, which meant most of my meals were gluten free. I would still eat gluten containing items infrequently, when I went out or something, and I was never too concerned about cross contamination (because I did not know I had a problem!) Does this sound at all like your situation?


    3 - See #1


    4 -Go through all of your toiletries and such with a fine tooth comb and eliminate anything suspicious. Some people say that you cannot absorb gluten through your skin, but why risk it? Also, there is anecdotal evidence here that people are sensitive to lotions with gluten in them. It's just not worth it!

  6. Hi there,

    I'm sorry you are having such a hard time, but I know exactly what you are going through. The doctors and derms I dealt with were all equally clueless. I actually had the last derm I saw say "Welp, I'm sorry but there is nothing more I can do for you." Okay, then!


    - Ditch the cortisone creams. They may help in the short term but make the rash even worse when you stop.

    - Your diet could stand a few tweaks: add more leafy greens (daily), raw and cooked; sip bone broth, either chicken or beef, for minerals and collagen (also daily); replace the Pepsi (too much sugar and bad for you chemicals!) with high quality mineral water; If you have access to high quality, pastured, grass fed meats add those in for variety and to access other nutrients.

    - Sweet potatoes are fine as far as sals go, I believe. What made you think to go low sal? It may not be necessary, and it would be a shame for you to cut out even more foods when your body needs nutrients to heal. I know some people felt that it worked for them, but I found it did diddly (I believe squirmy came to the same conclusion)


    A good tutorial to get you started in broth making: http://wellnessmama.com/5888/how-to-make-bone-broth-tutorial/ Since you eat chicken regularly, you can use the whole bird!


    You are in the worst of it and for that I am so sorry. You will get through this. It's hard, I know...the hardest thing I have ever gone through. Try to be patient. It can take a while to see improvement and I know that can be disheartening. It's a two steps forward, one step back kind of process. Take extra good care of yourself: sleep whenever you can, find ways to relax (meditation and hot epsom baths worked for me), just know that some days will be better than others. But with time the good days should become more frequent. I am 9 months gluten free and things are dramatically improved: the rash is not gone but it is so much less itchy and the flares clear up faster. You will get there.

  7. Hey there w8in!

    I just wanted to out in my 2 cents:


    Back in November and December I was having a really hard time dealing with stress - not just big STRESS but little everyday things were freaking me out. I was just so frazzled and felt ready to burst in to tears or throw S#&% at the drop of a hat. So, I enacted some really careful stress reduction protocols for myself:

    - 2 hours before bedtime, turn lights in the house low and turn off computer. Read something relaxing, drink tea. Minimize stimulation.

    - Take a hot bath with epsom salts right before hopping into bed. Epsom is magnesium with is very relaxing for the body.

    - Get into bed earlier and at the same time every night. I started getting into bed at 9:30 every night.

    - Walk outside every morning, rain or shine. Even just around the block.

    - I also took some supplements prescribed by my Naturopath - L-theanine, magnesium and ashwaganda

    - Avoid tv and the news like the plague

    - No sugar or caffeine (even chocolate had to go, as it really wired me up!)


    And it worked! About 3 weeks of this routine and I was starting to feel better. I still follow most of these practices today because they really work for me. You may have to figure out what would work for you, but I recommend checking in with yourself to see what might be causing stress/overstimulation.

  8. And I just wanted to check in/report/send you all love and hugs.


    I am doing really well. Like, REALLY well.  :D  I keep saying to my family that I feel like a new person - calmer, more focused, waaaay less anxious than ever before in my life. I stopped the Xanax back in December and have been enjoying this new calm in the center of my being. It's wild. I hope it stays! And my digestion is impeccable - too bad it's not something you can really share with people...well, outside of these forums anyway. :lol:


    The rash still comes and goes but it is so much less of a problem: less itchy, flares clear up quickly, no big blisters, smaller hives in general. I am hopeful that the purple-brown spots will fade in time, but honestly, I can live with it. Looking like a leopard-human hybrid is a small price to pay for feeling as good as I do.


    And finally, I want to apologize for not being around very much. When I first started coming here I was so thankful for the kind and loving support that I said to myself "You need to make sure you pay it forward when you are better and help others here." But, you see, one of the wonderful things that came out of this horrible, scary, chaotic last year was that I decided to go back to school for Nutritional Therapy Training and that is keeping me VERY busy. So, I am sorry to not be around, but know that I am thinking of you all.


    To the newbies struggling with DH: IT DOES GET BETTER! Take heart, you will get through this. Love your body, it's an amazing vessel. Feed yourself simple whole foods so it can heal optimally. (If you'd like to read a good and not-too-lengthy book on optimal nutrition, check out Eat Naked by Margaret Floyd) Sleep, slow down, drink water. Time and patience are your best allies.


    Love and BIG HUGS!

    (Much Less Itchy) Abby


  9. Hi Becky,

    Welcome to the forum! :D


    While it's hard to say whether you have DH or not, your post sounds a lot like my first foray here, 7 months ago. I understand your desperation. Truly, I do. The word "rash" is just too small for the torture of this kind of itch. (You can read my first post here if you'd like. There is lots of good feedback in there. https://www.celiac.com/forums/topic/102919-i-have-so-many-questions/)


    Did your doctor do a full Celiac panel before you went gluten-free? (I hope so!) Make sure you have cleaned your kitchen thoroughly. Did you read the newbie thread? I had to do a second clean sweep through my kitchen about 3 months after my initial gluten-free clean-out. The learning curve is steep in the beginning and there will likely be things that you have missed.


    Also, you did not say whether your rash is on both sides of your body. (Or maybe you did and I have reading comprehension problems) Does it present symmetrically? That is one of the hallmarks of DH. Have you looked at the DH photo bank? It might be helpful. My pictures are there, around page 7.


    Ok, to answer your question: like Prickly says, it really varies form person to person. I can tell you about my experience: The first month was the hardest, because I really couldn't say whether things were getting better or not. And I was exhausted from lack of sleep. And I was having week-long anxiety attacks. And I was trying to figure out how to feed myself. And I was afraid of food. Yep. It's REALLY, REALLY hard to stay hopeful in the beginning. You may find yourself questioning and doubting everything. Hang in there.


    I started to see some tiny, but noticeable improvement in the second month. The flare-ups would not stick around as long and the itch was marginally more bearable. There were still many bad days but I started to have a few good days here and there.


    By the third month, I was having good days more regularly. The rash was still flaring and receding, but I had gotten better at tolerating it and was seeing even more small improvements. Then in the fourth month, I kind of plateaued, which was frustrating. I tweaked a few things (better sleep hygiene, tending to my poor frazzled adrenals, another kitchen purge) and in the 5 and 6 months things moved along nicely.


    Here I am at 7 months. Things are much improved. I still flare up from time to time, but they last only about a day, aren't nearly as itchy, are much less raised, and do not develop the big water blisters anymore. And I have had a week at a time, here and there, where my skin is smooth. Yay! There is lots of freckling, which I suspect will take a long time to go away.


    IT DOES GET BETTER! I promise. It's hard, one of the hardest things I have ever been through (if not the hardest). But here I am, 7 months after going gluten-free and 5.5 months low iodine and I can tell you that I am much better, even though I am not completely healed. My shirts don't stick to me anymore. I don't spend most of my days crying and scratching. I no longer need to spend many hours in the bath. Some days, I don't even think about the rash. I can wear clothing and be comfortable. I no longer feel like I am going to die from itch (and I no longer feel like death may be the only option for relief - it is often known as suicide itch!) But it took a lot of time and hard work to get here. Your timeline will vary - it sounds like you have not had the rash for too long, and that might be a good thing. It's possible you will heal faster, but it's impossible to say for sure.


    A veteran here told me that every day is a healing day and to keep reminding myself of the two things needed to heal: Time and patience. So, I will pass that along to you: Time and patience and more time and patience. You will get there.

  10. Hi Blaze - My favorite dairy sub has been coconut milk. I get the Arroy-D brand as it has nothing in it beside 100% coconut milk. No thickeners/gums/salt/preservatives. And it is thick and creamy and tastes so good in tea that I may never go back to dairy milk. (Ok, I probably will, but I will still love coconut milk)


    I think it is normal to be a bit fanatical and neurotic in the beginning. You are learning a whole new food language! I also think the rash just makes us angsty - but maybe that's just me. When my rash flares, so does my anxiety. When the rash calms down, so does my anxiety. And so it goes, up and down, up and down, for a while. But it DOES get better, I promise. I am 7 months and some change in and am seeing and feeling much improvement.


    Just try to keep it simple. Eat whole foods as it is nearly impossible to avoid iodine in packaged foods. (Bonus! No labels to read!). Use kosher salt for seasoning. Eat some of that coconut oil, too - it makes not being able to have butter bearable. Keep a food journal to help you target things that might be aggravating. Find a few good comfort dishes that you can make regularly (My two current favorites: shepherd's pie with sweet potatoes on top, and roasted chicken legs with crispy skin with a big salad and roasted sweet potatoes. I could eat either of these for days and be content. Sweet potatoes got me through this! Heh.). Like Prickly, I cannot stand the idea of egg whites - so, I just gave up on eggs for a while. I decided to have one whole egg today, just to test. We'll see how that goes. As you can see, there is a bit of trial and error. You will get better at it and become more aware of your body than you ever wanted to be! :lol:

  11. Are these 2 flours pretty much interchangeable? I am going to try some of Elana's Pantry recipes & I have some almond flour but not enough for everything I'd like to try but I also have some Hazelnut flour. How do you think it would work if I used the Hazelnut instead of Almond in say the Muesli Scones recipe? Or the biscuit recipe?

    I have had good luck interchanging almond, hazelnut and cashew flours, so long as they are a similar grind. (Chestnut flour reacts differently and so is not a good sub, at least not without some modifications that I have yet to figure out.) :)


    They may not be interchangeable. Different texture, different taste, etc. It's hard to say, hon.


    If you want to try it, go for it. Some of my best baking/cooking successes came from experimenting. (i.e what may be construed as disasters)  :lol:


    I tried to make something new today (it called for cashew butter but I was out of that)

    I subbed sunflower butter....


    it was great ! except the loaf turned GREEN! 


    yes, sunflower butter can do that apparently, so we'll have a new, very cool paleo loaf for St. Paddy's... LOL

    Yes! Sunflower butter has chlorogenic acid that reacts with the baking soda and turns a perfect shade of Kelly green as the baked goods cool. I have read that you can reduce the baking soda by half if you do not want green baked goods. But otherwise, perfect for March 17th!

    Edit: I see you already posted this info!

  12. A well-known gluten-free blogger just posted about this subject today! She calls it a form of bullying: http://glutenfreegirl.com/2013/12/time-leave-7th-grade/


    I don't have any good answers for you about how to deal with it, besides what the others have already said. It's a real conundrum. My Dad went gluten free after my dx and he is feeling great (more energy, no more edema in his legs, no more apnea, no more reflux). He told a colleague - a doctor, mind you - that he wasn't eating gluten and this colleague scoffed, asked my dad if he actually believed that stuff and told him that gluten-free was a hoax. Oy.


    So, it's a big problem all around - ignorance, is a big part of it, yes, but I think people are also scared and extremely resistant. They don't like the idea that something so beloved (and frankly, addictive) to them is being ridiculed/cast aside/what-have-you.

  13. I almost feel embarrassed complaining about my rashes or itchiness when I read testimonials like the 2 of you.  I'm inferring from your answers that moisturizing or not isn't a factor in the healing?


    And here I go on another confession:

    My wife is a student of alternative medicine and should have earned her PhD if time on the internet counted towards the title. She wants to heal my gut. 



    Black Seed Oil

    Apple Cider Vinegar

    Barley's Greens


    Vitamin D3 and K

    Coconut oil for cooking and moisturizing

    Bleach baths


    I see that the oils are High Sal and Apple cider vinegar is High Sulfite.   I haven't read every page on this forum, but have posters discussed the above?  Do you have an opinion on alternate therapy and healing the gut?

    - Probiotics are good. What kind are you taking?

    - MSM - I would suggest drinking bone broth instead. It has MSM in it, in addition to a whole bunch of other stuff - minerals, collagen, etc. It has the added benefit of being food. I firmly believe that anyone trying to heal their gut should be drinking bone broth daily. Use marrow bones and/or chicken feet so you get lots of gelatin.

    - I am not familiar with black seed oil, though I have used the seeds (Nigella) in cooking. Looks like it might have some antihistamine properties. Also looks like an immune booster - I am not sure if that is a good thing if we have AutoImmune disorders. Maybe someone else knows?

    - ACV is general good stuff but possibly not in this case. I have recently noticed histamines may be an issue for my rash and so I cut out vinegar for a while. You may just have to experiment

    - Barley Green supplement is made from barley grass. It says that it is gluten free. I probably wouldn't take it though. I prefer to just eat tons of veggies and fruits.

    - I've been reading that zinc is important for skin. I think it's a good thing to be taking. What's you dosage?

    - Vitamins D3 and K are essential. Again, what's your dosage?

    - Coconut oil is awesome. I eat a few tablespoons each day. It is an excellent moisturizer!

    - Bleach baths. Eeek! But that's me. I prefer epsom baths. I also grease myself up with olive oil before stepping into the bath so I don't get too dried out. I only started doing this in the last month or two. Before that baths were too uncomfortable (when I had weeping blisters and the rash was really hot and angry)


    Also, are you sure that all your supplements are high quality and gluten free? (Sorry if you answered this already)


    Anyway, these are just my opinions and observations. I highly recommend keep a daily diary that includes food intake, rash notes and other physical symptoms, activity log and mood/sleep notes. It seem like a lot of work but you get used to it. It's been an invaluable tool for me. And squirmy is right - it's a good idea to be flexible and willing to experiment and observe. There is so little that is really known about DH and everyone has slightly different experiences it seems.


    Here's what has seemed beneficial for me:

    - Sleep. Yep, this is #1! It has a dramatic effect on my rash. The nights I sleep well, I wake up to a calmer rash. I take naps as often as I need and I enacted a good sleep hygiene routine (no computer after 8pm, low lights in the evenings, no stimulating activities, hot epsom bath before bed)

    - Stress reduction. Very important. My rash flares up after even small amounts of stress. Meditation has helped me a lot. I have also jsut had to slow my life way down for the time being. No overbooking or overpromising. Laughter daily. Gentle exercise as often as possible.

    - Strictly whole foods diet. Fresh meat, fresh leafy veggies, fresh fruits, safe starches like sweet potatoes, tapioca and white rice, some nuts, but limited amounts. I drink bone broth a few times a week (would like to do more). I have eliminated refined sugar. I use honey and maple syrup occasionally

    - I've recently been playing around with a low histamine diet, just to see how it affects the rash. The jury is still out but it looks promising. (that's why I've been reducing my intakes of nuts)


    I wish you good luck and comfort!

  14. It does get better! Everyone told me this 6 months ago when I first went gluten-free and I just had to believe them. The first month or two were really hard and then I started noticing a few more good days here and there. Now at 6 months, I am feeling hopeful and the bad days are fewer and farther between.


    Your body is working hard at healing right now. Time and patience ad more time and patience. You need lots of rest, lots of water and simple foods. I second the bone broth suggestion - make it with marrow bones and or chicken feet to get lots of gelatin for tissue repair! Drink a cup a day at least. Sweet potatoes, pears, bananas - soft foods might be best for a while. And maybe eat small amounts. You could try making some congee - it's really easy and nourishing. Are you taking a probiotic?


    You are doing a good job from the sound of it. I know it's hard. I was there not to long ago (though with different symptoms) and I felt hopeless and scared. I just hung on to the words that people here told me. Time and patience. It will get better. Hang in there. *gentle hug*

  15. Hi there, JennaQ

    Have you ever been tested for Celiac? It is recommended that you get tested before you go gluten free. The tests for Celiac will likely come back negative if you are not actively eating gluten. The problem comes later down the line if you need a confirmed diagnosis, then you would have to do a gluten challenge which requires you to eat a certain amount of gluten for a while (6 weeks to 3 months). The importance of figuring out if you have Celiac or not is so you can know if exposure to gluten is doing damage to your gut. I would say that a Celiac working in a non-gluten-free Bakery would be a bad idea. Someone with less severe gluten sensitivity may be able to make it work, by using safety measures such as face masks and gloves, taking care to wash up and protect their own food they bring with them. (It still seems like a bad idea to me, but I am extremely cautious.)


    The immediate issue is trying to figure out if you are sensitive to gluten and whether that will affect your job choice. You may not have your answer right away, unfortunately. Sometimes people feel immediately better when they stop eating gluten, sometimes it takes a while. And then some people find that after being gluten free for a while that their reactions to even trace amounts of gluten can be more pronounced than they were before going gluten-free. By way of an example, you could stop eating gluten altogether and find that you feel better for several months, and then you start to notice you are not feeling so great and come to find that your frequent exposure to flour is setting you back. This is just an example! Everyone is different.

  16. The biscotti I made last night (adapted from Elana's pantry)

    1.25 cups blanched almond flour

    1 tbs arrowroot

    1/4 tsp salt (these are salty-sweet. If you want more sweet, use less salt)

    1/4 tsp baking soda

    1/4 cup honey

    1 tbs orange zest

    2 tsp anise seed

    1/4 cup toasted hazelnuts, chopped


    Preheat oven to 350

    Whisk the dry ingredients together and dump into a food processor. Add honey and orange zest and pulse until it forms wet crumbles. Pulse in chopped nuts.


    Dump onto a parchment lined cookie sheet and press into a log. Bake for 15 minutes. Let cool for an hour then slice into 1/2" diagonal slices. Bake @ 300 for 12-15 minutes. Let cool completely or they'll be chewy (ask me how I know this. :D )


    So this recipe only makes about a dozen or so. I will probably be doubling it if I am making it for more than just me n my sweetie. I also think they would be extra tasty dipped in white chocolate.

  17. these are  billed as 'the forgotten cookie' sometimes, but we always called them 'nitey-nites'.  my grandkids loooove them ;)


    2 egg whites

    1/2 cup sugar

    1 - (6 oz) package of chocolate chips

    nuts (optional)


    beat egg whites until stiff.  add sugar and continue beating until dry looking.  add chips (and nuts, if you want) and stir with a spoon.  drop by spoonfuls onto greased cookie sheet (i use parchment paper) put in a heated oven (375) turn off oven when you put them in.  leave overnight.  nitey-nite :)


    makes 2 tray fulls - probably 48 if you use a teaspoon. 

    Awww! My gramma used to makes us nitey-nite cookies!