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Un-officially diagnosed
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I am so new at this! I have been un-officially diagnosed, but three of my doctors tell me to to try the Gluten Free life. I have been trying for a few weeks now. It's not easy at all yet. I think I have a good attitude, but the adjustment is still very new, and I am still trying to figure out what to avoid and what to have. I get heart burn and acid reflux so easy, I certainly hope this goes away soon. I happen to love, love, love coffee with cream. I can avoid sugar, but I love, really love coffee, and real cream. I hope I don't have to give up coffee to avoid heart burn. I can give up gluten I am certain, but my coffee will be hard. I have had Gerd and acid reflux for many years, probably over 20 years.

My skin is awful. I've been told I have the Celiac's rash, but it was first diagnosed as dermititis. Then it never got better, and it itched like crazy. Then it was diagnosed as Psoriasis. I was even put on Humira. That failed. Then I was put on Embrel. That failed. Then I went to a new dermatologist. He saw my crazy, red, sort of blistery rash and said it looked like a Celiac's rash so he took scrapings and biopsies, but they came back negative for Celiac's! I have battled this skin stuff and have had more skin biopsies taken. I still have the stitches in place from my last biopsy taken about a week ago. I get those stitches taken out next week. A Dermitopathologist took these last biopsies. I have been told it certainly looks like an auto-immune disorder, and may have to go on some kind of immunosuppressive drug to combat my discomfort. Just before I saw my dermitopathologist, my current dermatologist kept muttering under his breath the words: dermititis herpetiformis. I was even put on Dapsone but that didn't work. I have an allergy to sulpher, and dapsone has sulpher in it. My skin reacted more to that. This has been a true battle. I just don't know why it's so hard to diagnose! You would think that with so many of us suffering the diagnosis would be easier to determine! I have some pictures but I am so new to this forum, I have to wait until I post ten approved posts. When I get to that point, I'll try to upload the pictures of my rash. Right now I am still taking Prednisone for the skin. It is the only thing that can clear up my skin to a point. By the time my skin finally looks like it has tried to clear up, my Predinsone prescription is done, and my skin rash re-appears. I hope that doesn't happen again. When my dermatologist mentioned dermititis herpetiformis, I started my Gluten Free diet. I tried it about a year ago too, but since those skin biopsies came back negative to Celiac's, I went back to eating Gluten because I thought, well it can't be Gluten that's causing my skin to erupt and my stomach to go crazy. The tests came back negative. Now after much reading and tons of Internet searches and article reading, I am certain my skin is a form of the dermititis herpetiformis, and my stomach troubles certainly resemble those of a Celiac. I also have Hypo-thyroid and am taking Levo-thyroxin (generic Synthrex)to help that out. These all seem to go hand in hand if you have an intolerance to gluten. So why the negative diagnosis? Next Tuesday, I will see the Dermatopathologist, a board certified Dermatologist, who also took my skin patch tests this summer--we will go over what she diagnosed and my course of treatment. I have to admit, my doctors are really trying to get to the cause of all this. I just hope I am successful in what ever I need to do.

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dear, coffee has a lovely habit of causing GERD to act up in some people You could be one of those people :(

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There is an herbal substitute for coffee. Perhaps someone on the forum could tell you what it is. Otherwise, maybe ask at a health food store. You could still have a hot drink.

Whatever, I hope your rash will go away. I hope that the diet will help you.

Get well, ***

Diana

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I'm a coffee lover too.

For awhile, I had to substitute green tea. It didn't kill me emotionally or physically. I yearned a bit, but no more than I yearned for other things. (World peace, the end of US occupation in the Middle East, that more grocery stores would carry Against the Grain pizzas and bagels and french bread, or that the South Florida Water District would stop draining water from Lake Okeechobee into the Indian River Lagoon.)

For awhile, I couldn't do dairy either. That hurt.

Now, my breakfast is a scoop of icecream with a cup of coffee poured over it. Sometimes I melt dark chocolate in the cup with a little milk first, add the icecream, stir well, and pour in the coffee. Then I have a frozen banana half spread with nuttela and dark chocolate chips. That covers protein, fruit and dairy, right? Plus antioxidants?

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Welcome to the forum, and I hope we can help. :)

How, and by whom, were you unofficially diagnosed? Was it by a dermatologist or a dermatopathologist? Did they do a biopsy of the skin adjacent to a lesion on your skin? I certainly hope so. Unless the biopsies are taken in the right place and treated with the right staining they will not diagnose dermatitis herpetiformis. Perhaps this is why it has taken so long and hopefully this last specialist will have done it right. :) Unfortunately, if you were on prednisone at the time of your biopsy that could negatively affect your results since the prednisone is designed to suppress the antibody response which is what you are testing for. Oftentimes it seems this celiac battle is one you just can't win for trying :(

Let us know what the results of your testing were, and it may be necessary to stop the prednisone and resume eating gluten (and suffer :angry: ) to get a valid diagnosis. From what you have said, it certainly sounds like DH. I have psoriatic arthritis, and Humira certainly did the trick for me :) so no, it is not that.

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I'm a coffee lover too.

For awhile, I had to substitute green tea. It didn't kill me emotionally or physically. I yearned a bit, but no more than I yearned for other things. (World peace, the end of US occupation in the Middle East, that more grocery stores would carry Against the Grain pizzas and bagels and french bread, or that the South Florida Water District would stop draining water from Lake Okeechobee into the Indian River Lagoon.)

For awhile, I couldn't do dairy either. That hurt.

Now, my breakfast is a scoop of icecream with a cup of coffee poured over it. Sometimes I melt dark chocolate in the cup with a little milk first, add the icecream, stir well, and pour in the coffee. Then I have a frozen banana half spread with nuttela and dark chocolate chips. That covers protein, fruit and dairy, right? Plus antioxidants?

Love your reply Marilyn! Thanks for the humor, albeit the truth too~!

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Love this site for the support! Thank-you for all that have responded! I'll let all of you know what the results say tomorrow!

Onward now with my own research, as I feel we are our own best support in our search as to why we have what we have!

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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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