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wildwood

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  1. My ( limited ) understanding of lichen sclerosus is  autoimmune with  a possible connection to thyroid disease where  as Dermatitis Herpetiformis ( DH) is an autoimmune disease associated with celiac disease .

     

    It would be possible to have both lichen sclerosus and dermatitis herpetifomis at the same time :(

     

    And yes it is very possible to have DH ( celics) with a neg blood work and endoscopy

    I am curious where you found the information that lichen sclerosus is connected to thyroid disease.  I have lichen sclerosus and my thyroid tests have all been normal and all of my problems are skin and joint related.   When I gave up gluten, my lichen sclerosus went into remission over time, I no longer get rashes, and my joints no longer feel stiff when I wake up in the morning.  I want to make sure I keep up on my health so I am interested in any relation between lichen sclerosus and thyroid since my thyroid has been tested to be normal.  Thanks.


  2. My daughter was diagnosed with celiac through bloodwork at her GI. The celiac panel was done as rule out because she had so many different types of vague symptoms including tremors in her hands. The endoscopy was done before the celiac panel came back (I feel they did not believe she had celiac) and we were told the endoscopy was normal showing no signs of damage. When her celiac panel came back, she was told her numbers were the highest they had seen for a patient. Since the first endoscopy was done before the positive blood test, they asked her to come back for a repeat endoscopy at their own expense and this time they took samples. Once again, the endoscopy came back normal even though her blood test was highly positive. We were told they felt she was a mystery. I guess my point in all this is that just because an endoscopy comes back negative it does not mean a person is not celiac. I have always found it troubling that medical providers find this to be the "gold standard" in diagnosis. Celiac can cause damage in insidious ways other than GI damage and the damage to intestines can be so patchy. I would think the neurologist could accept the positive blood test and positive response to the diet. My daughter could not go back on gluten now even if she tried because now that she has removed it from her diet even the tiniest amount makes her so ill she feels as though she is digesting razor blades. Thank goodness she does not get cc'd very often. I hope your husband stays away from gluten, especially since he is having neurological symptoms. It always bothers me when physicians want someone to intentionally make themselves sick by eating gluten just so they can prove the obvious through their testing. Medicine is not and never will be an exact science


  3. In our house, any kitchen item that is to be used for gluten free only (colander, storage containers, whisk, etc) is red in color. I got the idea on this forum. It has worked out very well in our home. I write gluten free on the lids with marker for peanut butter, jelly, etc. It was a little easier in our home because there are no young children so we all understand how important it is not to cross contaminate/mix things.


  4. I think the overall message conveyed by Dr. Oz is still going to be beneficial to someone out there. I think you are right in that he should have mentioned that getting tested after going gluten free might skew results, but what he did do was perhaps provide a possible path for people to explore to explain their vague symptoms. Before my daughter was diagnosed, I had never even heard of gluten intolerance or celiac disease. I do wish he would have mentioned dermatitis herpetiformis, eczema, and/or rashes when going over possible symptoms because in retrospect all of my daughters problems started with itchy rashes on her knees that were diagnosed as psoriasis. Leading up to her diagnosis she had heart palpitations and hand tremors. She did not start getting GI symptoms until years after the rash appeared and even those GI symptoms were vague. I appreciate his effort to encourage people to explore the possibility of gluten intolerance or celiac disease.


  5. If possible, I would find another dentist if I were you. When my daughter asked the hygienist at our dentist's office, she did not know. She said she would find out. She called every manufacturer regarding anything that would touch my daughter to confirm they were gluten free and made sure to inform my daughter when she went for her appointment and also let me know when I went in that she had checked thoroughly to make sure that none of the products contained gluten. If you cannot find another dentist, I would make sure that you let your present dentist know what your experience was with his hygienists. Their responses were totally unacceptable and he should be aware of how is staff is interacting with his patients.


  6. Thanks for the information on the iodine patch test. I had an itchy rash that appeared for the third time in the same area in a six month period. Each time it gets a little worse. It is itchy just before it erupts. It feels as though it is a spider or insect bite before it erupts which the first time it happened that is what I thought it was, but each time it lasts longer and erupts one welt at a time and is most itchy at nighttime. The most recent one looked like at least one of the DH pictures I viewed, but it is hard to say for sure because the pictures all look different to some degree. The spots are still visible although they are no longer uncomfortable and have faded quite a bit. Even though it looked like DH picture it was only on one side and I know for the most part DH is bilateral. After I posted this originally, the itching had stopped. I tried the iodine patch adjacent to the rash and in a couple of other spots and nothing happened. I was unable to find iodine 30% and used an iodine tincture, but the rash was already on the mend so I am wondering if that is why there was no reaction. This past week the base of my back felt sensitive almost burnt and like it wanted to be itchy, but was not exactly itchy-just sensitive. It is hard to describe. This happens from time to time. It does not get red or anything just a little itchy and sensitive. I also get itchy on my hips and this time hip bumps showed up the same time as the back burn/sensitivity. I can very slightly feel little pimple size bumps on my hips when this happens. I always have assumed it was dry skin. I can feel them, but cannot see them. They do not turn red at all. I decided on a whim to try the iodine patch test on my lower back and also on my hips. When I put the bandaids saturated in iodine on these areas the areas burned, only where the iodine touched. I now for two days feel as though I have steam burns. There was a water blister under the bandaid on my lower back that popped very easily. The skin on my hips is sloughing just where the iodine was and feels as though it has been burned by steam. My husband put on the iodine also to see if he would have the same reaction and he felt nothing and the iodine is all but faded. The spots where I put the iodine are red and "steam burned" and either sloughing or blistered. My daughter has celiac disease and while I was helping her explore her gluten free options I was eating almost completely gluten free. Now that she is not coming home as often, I started eating gluten regularly again. I don't think it is the iodine causing the "burns" because two weeks ago when I tried this I had no reaction to the iodine at all and it is the same iodine I used this time. I will probably go the the dermatologist for biopsy if the DH looking rash comes back again. In the meantime, I was wondering if anyone knows if this reaction to the iodine would be indicative of gluten intolerance or would there be other instances where one would react to iodine this way.

    I just noticed the strangest thing. I have been keeping an eye on my iodine burns because they still have not healed completely. I am also watching my original rash because it has been about a month and it is taking such a long time to fade away. The original patch I tested at the end of November that had no reaction when I first did it is now visible. I can see the outline of the gauze part of the bandaid and some red dots in the middle. This is so strange because I did this the end of November and had no itch or burn or anything at that time. This old outline was not there yesterday. It has not been itchy or painful in any way. It just seemed to appear. Very, very strange.


  7. I was diagnosed with this 22 years ago. It was shortly after giving birth to my second child. I am thinking I may have a problem with gluten because I had a DH type rash almost a month ago that has appeared for the 3rd time in the past six months. I am trying not to make things "fit", but it seems to make some sense. In retrospect, when the LS presented our grocery budget was $50 a week and that had to go towards diapers and formula also. We literally lived on pasta. I started out being treated with a testosterone compound which was just awful. I then went to a diprolene ointment. I now use hydrocortisone valerate. I seem to be in remission and only use the cream occasionally if I feel things might be starting to flare.

    Over the course of the years, I found that I preferred a "low carb" diet and seemed to feel better. I don't know if this has contributed to the remission, but as of a week ago I have stopped eating gluten. I will be interested to see if I have any LS flares going forward.


  8. I have used rice paper. I put the spinach filling in and then roll them like an egg roll. I like them this way. You can't eat them expecting phyllo dough just to warn you. They have a chewy texture that I actually enjoy. My daughter liked them this way too, but when I made the puff pastry last time she fell in love with it and asked that I do it with puff pastry again. She is coming home tonight so I am going to have her try one of the spinach tarts I made using the Land O Lakes recipe to see if she likes those as much. I hope so :) The tarts are so easy compared to the puff pastry.


  9. Someone here on the forum had directed me towards this video for phyllo dough last year and I did give it a try. He makes it look so easy and I thought I was doing everything just the way he showed, but the layers melded together and it was nothing like phyllo dough. It was a very time consuming process and I guess I cannot bring myself to try again because the result was so disappointing given the effort I put into it.


  10. On Christmas Eve every year, instead of dinner we have hors d'oeuvres all evening and play games. I was hoping some of you would share some of your recipes. My daughter and her friend are both celiac so I make all of the dishes gluten free. I have attempted to recreate phyllo dough several times, but regrettably I must admit defeat. I did find a good recipe on the Land O Lakes site for a tart pastry. I use the pastry from their cranberry tart recipe (I have never made the cranberry tarts though). I put it in the mini muffin tins and fill it with my spanakopita filling. I did a "test run" a couple of weeks ago. My other daughter who is gluten eating said they were just as good if not better than the ones I make using phyllo dough. This says a lot because she tends to be averse to anything I bake that is gluten free. I made puff pastry last year. It was good, but took so much time. This gives the same flavor as a puff pastry in a fraction of the time.

    I would appreciate any other ideas some of you may have. Here is my typical Christmas Eve spread:

    Spanakopita tarts (described above)

    Shrimp cocktail

    Jalapeno poppers (I make ahead of time using Schar Breadcrumbs and freeze)

    Chicken bites wrapped in bacon (this is similar to the scallops in bacon, but my daughter and I are allergic to scallops)

    crudites

    tortilla chips with salsa and hummus

    cheese and pepperoni

    If I have time, I will also make some gluten free flour tortillas and make spinach rolls with roasted red pepper dip. I made the flour tortillas about 6 months ago and they were really good. I have not tried making them ahead and freezing yet. This year December somehow got away from me so I may not get to these this year.


  11. At my Husband's urging, I have decided to go gluten free. He said he eats what I cook any way so it will not impact him so much as long as he has a loaf of bread in the house for an occasional sandwich. He said my rash looked so close to some of the DH pictures we viewed and was so itchy he feels very strongly it is DH. If it comes back, I will go to dermatologist for a biopsy. My daughter's skin problems resolved after being gluten free for a period of time. She developed a screaming rash all over her body after being 8 months gluten free. I did not get to see it because she was travelling across country at the time so I cannot compare how it looked to my rash. In retrospect a couple of years before her celiac diagnosis she had persistent rashes on her knees. The dermatologists kept telling her it was psoriasis or eczema, but biopsies were inconclusive. I don't remember exactly what the rashes looked like, but I am quite certain they biopsied the rash itself and not the area around the rash. Her skin problems have resolved now that she has been gluten free for a few years. Hindsight sure is 20/20 isn't it? I figure even if I go gluten free and it is DH, chances are it will erupt again at some point as gluten works its way out of my body and I can go for a biopsy at that time. I have decided to deem the iodine test as inconclusive because it seems more like burns from the iodine since no lesions erupted anywhere else. Thanks.....


  12. Thanks for your responses. The truth is we do not know which side of the family my daughter's celiac came from. There is no diagnosed celiac disease on either my husband's or my side of the family. She had the gene test and it is from one side. Both sides of the family have relatives with problems that could fit into the celiac spectrum, but as we all know that is not hard to do. I think I will go ahead and give up gluten and for the time being iodine and see what happens. Obviously my body is trying to tell me something. If the rash comes back, I will go for a biopsy. Thanks again for your help.


  13. Thanks for the information on the iodine patch test. I had an itchy rash that appeared for the third time in the same area in a six month period. Each time it gets a little worse. It is itchy just before it erupts. It feels as though it is a spider or insect bite before it erupts which the first time it happened that is what I thought it was, but each time it lasts longer and erupts one welt at a time and is most itchy at nighttime. The most recent one looked like at least one of the DH pictures I viewed, but it is hard to say for sure because the pictures all look different to some degree. The spots are still visible although they are no longer uncomfortable and have faded quite a bit. Even though it looked like DH picture it was only on one side and I know for the most part DH is bilateral. After I posted this originally, the itching had stopped. I tried the iodine patch adjacent to the rash and in a couple of other spots and nothing happened. I was unable to find iodine 30% and used an iodine tincture, but the rash was already on the mend so I am wondering if that is why there was no reaction. This past week the base of my back felt sensitive almost burnt and like it wanted to be itchy, but was not exactly itchy-just sensitive. It is hard to describe. This happens from time to time. It does not get red or anything just a little itchy and sensitive. I also get itchy on my hips and this time hip bumps showed up the same time as the back burn/sensitivity. I can very slightly feel little pimple size bumps on my hips when this happens. I always have assumed it was dry skin. I can feel them, but cannot see them. They do not turn red at all. I decided on a whim to try the iodine patch test on my lower back and also on my hips. When I put the bandaids saturated in iodine on these areas the areas burned, only where the iodine touched. I now for two days feel as though I have steam burns. There was a water blister under the bandaid on my lower back that popped very easily. The skin on my hips is sloughing just where the iodine was and feels as though it has been burned by steam. My husband put on the iodine also to see if he would have the same reaction and he felt nothing and the iodine is all but faded. The spots where I put the iodine are red and "steam burned" and either sloughing or blistered. My daughter has celiac disease and while I was helping her explore her gluten free options I was eating almost completely gluten free. Now that she is not coming home as often, I started eating gluten regularly again. I don't think it is the iodine causing the "burns" because two weeks ago when I tried this I had no reaction to the iodine at all and it is the same iodine I used this time. I will probably go the the dermatologist for biopsy if the DH looking rash comes back again. In the meantime, I was wondering if anyone knows if this reaction to the iodine would be indicative of gluten intolerance or would there be other instances where one would react to iodine this way.


  14. This pie crust recipe is from an old post, but I wanted to resurrect it. I do not bake much in the order of cakes or cookies, but I am known for my wonderful pie crust. I have been experimenting with different gluten free recipes for a traditional two crust pie crust and this is by far the best. This will be my go to recipe for pie crust from now on. I baked a rhubarb pie and this crust came out just as good if not better than the gluten pie crust I used to make. I used rice powder that I purchased at our local oriental market. Thanks Ipellegr!!!

    lpellegr, on Jul 24 2006, 12:02 PM, said:

    I don't use any of the premade mixes, but I can give advice on making your own. For the graham cracker crust, find any good gluten-free cookies and crush them. I used Pamela's pecan shortbread for a cheesecake and it was really good. As far as real pie crust, are you used to making your own, so you understand how to cut the shortening into the flour and then add water a little at a time to pull it together? If you can do that, this will work for you. The best gluten-free crust recipe I found that actually compares well with a normal pie crust is the Vinegar Pastry (Revised) from the Gluten Free Gourmet by Bette Hagman, with my version of the instructions below.

    1c white rice flour (I recommend the fine kind you get at Asian markets)

    3/4c tapioca flour

    3/4c cornstarch

    Note: you could probably substitute a commercial gluten-free flour mix for the above.

    1 rounded teaspoon xanthan gum (check to see if this is included if you use a mix)

    3/4t salt

    1T sugar

    Mix all the dry ingredients above in a medium bowl. Cut in with a pastry blender:

    3/4c shortening (like Crisco) until crumbs are like rice in size, maybe a little smaller.

    Mix together:

    1 egg lightly beaten

    1T vinegar

    Add these to the flour/Crisco until blended. Then sprinkle in, 1T at a time, 2-3 T ice water. It may take more or less, the goal is to add just enough that you can gather the dough in a ball that doesn't break apart into dry crumbs and isn't wet and slimy. After adding 2 or 3T, gather the dough with your hands and decide if it needs more. It's okay to squeeze it a little. When all the dry crumbs are incorporated, you're done. Divide it in two and wrap each in plastic wrap. Refrigerate for 30 min to firm it up. When ready to use, roll each out between two pieces of wax paper or plastic wrap dusted with gluten-free flour. Peel off the top sheet, lay your pie pan on the dough, upside down and centered, then put your hand underneath and flip it over so the dough is in the pan. Pat it into place, then peel off the plastic. Now you can shape the edge and follow your recipe for the filling of choice. If you're going to prebake it, use 450 degrees for 10-12 minutes. You can also freeze the balls of dough and thaw them later - they still work fine. All the gluten-eaters proclaimed this pie crust as good as my old ones at the last two Thanksgivings. Hope this helps!


  15. There is a website flylady.net that gives tips on organization and anti-procrastination. The fly lady says that procrastination is due to perfectionism. I thought that sounded a little out there, but when I thought about it she was absolutely right. Alot of people tell themselves if you can't get it all done, why start at all. I know when there are jobs I just don't want to do or just seem daunting I follow her advice and set the timer for 15 minutes. If I want to continue I do, but if not I have at least started the job and give myself permission to walk away if I have completed the 15 minutes. You would be surprised how far you can get working on something at 15 minute intervals a few times a day. She says you can do anything for 15 minutes at a time and she is right. I use this concept for yard work, closet cleaning, work I bring home from my job, etc. I have to admit I was never in the dire straights that alot of her followers are, but I have found it to be good advice that has stuck with me. 15 minutes at a time actually works!


  16. Yes, polenta is another word for fine cornmeal. I think tapioca flour would sub for the polenta if you didn't want to use corn. I like that little bit of cornmeal in the dough because the texture it gives reminds me of what a wheat pizza tastes like when you dust your pizza pan with cornmeal--that's what it reminds me of.

    Yes, my pizza was like a thinner crust, but it wasn't crunchy--it was soft. I just made it stretch because I wanted to feed my whole family with one recipe. I'm sure if you made the pizza a little smaller, the crust would be thicker.

    I have a question now about the buckwheat pancakes (and thanks for the recipe! Can't wait to try it!). I can't get buttermilk in Malaysia (where I live), but I can get Greek yogurt and sour cream. Could either of those substitute?

    Yes, you can use Greek yogurt or sour cream. Just dilute it with milk so it is a similar consistency to buttermilk. It is usually about a 75/25 or 50/50 ratio depending on how thick the yogurt or sour cream is. I hope you enjoy! I am looking forward to trying the pizza crust recipe. I am curious to see the difference in texture using the cornmeal.


  17. My husband and I want to have the gene test to see our predisposition to celiac disease. When we bring it up with doctors, they essentially blow us off stating that the test is too expensive since it will not be covered by insurance yet they cannot tell us how much it is. I only want a ball park of what to expect as we want to have this testing done. Does anyone know? We live in New York State so we are not permitted to order My Celiac ID or Enterolab tests. I am annoyed by this, but living in New York I have learned that the politicians here spend alot of time "protecting us from ourselves". I appreciate any information anyone can give me. I would like to move forward with this, but don't want to find out after the fact that it is thousands of dollars for each of us. Thanks!