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Really good scratcher

Member Since 16 Oct 2012
Offline Last Active Nov 02 2012 09:11 PM

Posts I've Made

In Topic: Finally! A Great Doc

30 October 2012 - 05:34 PM

It seems that those of us with DH often get negative test results for Celiac's. To me it seems the standards are not set correctly. My blood work and biopsies continually come back negative, but my rash pictures certainly show DH in viewing. I have suffered for three years. I have been on a steroid cream or ointment since my first year. Most prescription strength steroids don't seem to help much. However I am seeing a team of Dermatologists through one of the local University School of Medicines in our city. Two of the derms keep saying (under their breath) Dermatitis Herpetiformis. They agree it is an autoimmune disease, and are treating it as such. They are supportive and they are puzzled as to why the tests come back negative too. They are trying. They have encouraged me to go on the Gluten Free diet as they know this is the best way to treat this condition regardless of the test results. I feel like I am getting the right kind of attention from them.
However, I have taken it upon myself to go Gluten Free no matter what. I am still learning about it! I think I am getting some cross contamination as I still have up and downs with the stomach issues, and just recently a few spots on my skin have increased in the itching intensity and have red bumps in some new places. However some of my older spots are trying to clear up. I see an improvement.
I also made an appointment to see a Gastroenterologist I saw almost ten years ago for stomach issues I had back then. He's familiar with Celiac's. I certainly want to see what he has to say once I hand him my medical history since I last saw him.

In Topic: Rash Pics

28 October 2012 - 09:30 AM

I am definitely doing the gluten-free life now. I am new at it. Learning a lot--and there is a lot to learn. It's a little overwhelming and kind of depressing to give up so much right now. I'll get over it and embrace it soon enough, but I know I'll handle it better as I go through the stages of withdrawal from gluten. I have to recognize this is a true, drastic lifestyle change. It is a drastic change from what I was able to eat before. It's going to be hard at first, as I learn about everything. I am so surprised as to the simple things that have wheat, or rye or barley in them. Lots of flavorings have wheat in them. I used to get beef broth and chicken broth for soups and stews in the winter, and most of the regular brands have a wheat base or some kind of wheat flour base in them! Salad dressings have wheat in them! Why? Then I'll have to stop going out to eat and we didn't eat out that often. Restaurant changes-that will be hard. Going out with friends--all things have to be considered. A lot! So it's new, I'm learning, and I'm going through stages of denial and acceptance. It's hard on my family too. I am the only one suffering these symptoms. Strange. Well, one of my sons has some similar symptoms-- so I will be asking him to be observant and then see if he needs tested. He's twenty years old. He says he is lactose intolerant, but it could be a celiac sign. He gets migraines too, fairly often. I had migraines like crazy in my twenties and thirties. I've already told him he may be more susceptible, and to watch his reactions when he eats gluten. I sigh heavily when I can't enjoy some of the foods I used to. Holidays this year will be especially hard. I make the best flour biscuits, but now I guess I won't be able to--at least the way I used to make them. My family will miss that-heck, so will I! I also used to make wonderful home-made yeast bread, but I guess not any longer--at least with the ingredients I used to use. I know I will have to investigate the other types of safe flours available for celiac's, but it will be so hard to adjust right now. It's just too new. Our food budget looks like it will have to increase for the cost of gluten free things. That will be hard right now too.
I thought it would be helpful to have the Celiac's diagnosis from the docs just for official records. I guess that's not needed for anything except for sceptics that can't believe gluten intolerance is a real thing.
I can make my own chicken stock or broth, and I can probably make my own beef broth too.
I am a great cook, and can follow recipe's really well. I am a great experimental cook. Just ask my hubby. He always tells me how good a dish I make, but he'll know he may never get it again because it was recipe #3257 and I won't remember how to do it again! LOL! I can adjust. I can learn to cook gluten free. I am just going through the initial phase of change right now.

In Topic: Good Dermatologist - Finally!

27 October 2012 - 08:15 AM

You sound like me! These are the exact things I have been going through. I even go the the University Dermatology department! I've been a subject of their Grand Rounds. Still no true DH or Celiac diagnosis! I have been trying Gluten Free for almost a month now. I still have heartburn really terribly, but I feel a little better. My stomach still goes crazy up and down with D and C, and my skin is only partially cleared up due to being recently on Prednisone. My derms do think it definitely is an Auto Immune Disorder and just recently put me on an Immunosuppressant drug called Cellcept. They did try Dapsone-- and for two days my skin started to clear up, and then it reversed because I am allergic to sulphur, and a new and separate rash began on top of the DH. Not fun. They took me off Dapsone immediately. They think this Cellcept will do the trick, but I am on my fourth day of it, and my skin is beginning to get itchy again. It's tolerable, but I just wonder. I am still trying to do this Gluten Free thing, and it's not easy. 50 years of eating wheat with no thought of it being damaging is a very long lifetime habit to break. I have three good sized sons, all over six feet tall and they eat food like crazy. Bread and wheat being a staple and they love it. My hubby also loves wheat and breads. However, hubby will eat any meal I prepare and will not complain. He also cooks some and most of the things he cooks are naturally gluten-free, like grilling, and rice dishes. He makes a mean chili and I hope I can help him alter that a bit so it is gluten-free for me. I am still adjusting to this gluten-free lifestyle. I am trying to keep upbeat about it, but it is so challenging right now and expensive. A friend of mine sent me the tax deductions you can take for being a Celiac. Kind of cool, and to do it right, I want to build an Excel spreadsheet! LOL I work on Excel spreadsheets all day for my day job!
You've been gluten-free for a year now. How did you adjust to this?

In Topic: Rash Pics

27 October 2012 - 07:49 AM

I'll go clear the privacy setting on Flickr. Just didn't want the entire Flickr world to see them. It's ok if my DH friends see them, LOL!

In Topic: Medication Other Than Dapsone? Please Help!

25 October 2012 - 07:41 PM

I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

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