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Un-officially diagnosed


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6 replies to this topic

#1 Really good scratcher

 
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Posted 17 October 2012 - 05:45 PM

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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#2 shadowicewolf

 
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Posted 17 October 2012 - 06:27 PM

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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#3 1desperateladysaved

 
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Posted 17 October 2012 - 06:33 PM

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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#4 Marilyn R

 
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Posted 17 October 2012 - 06:54 PM

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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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#5 mushroom

 
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Posted 17 October 2012 - 07:22 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 Really good scratcher

 
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Posted 21 October 2012 - 05:04 PM

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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#7 Really good scratcher

 
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Posted 21 October 2012 - 05:07 PM

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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