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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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