• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Un-officially diagnosed
0

7 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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~!

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites




Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,330
    • Total Posts
      935,521
  • Member Statistics

    • Total Members
      64,991
    • Most Online
      3,093

    Newest Member
    Cz28
    Joined
  • Popular Now

  • Topics

  • Posts

    • Re. gorilla munch - Made with corn, says gluten free on the box, I don't know why it wouldn't be. It's quite yummy. Corn pops and Post golden crisp used to be my favorites, before celiac.
    • I buy the Chex cereals( except wheat). I had recently been buying Puffins from Barbara's bakery but got a very unsatisfactory answer to my question about where they source their oats so I have decided to stop buying them. See below.... "Thank you for your recent email about the oat flour in our Puffins cereal.  We appreciate the time you took to contact our company.

      Approximately 90% of our ingredients are sourced from North America. However obviously there are some crops that do not grow here, and items that are not manufactured here. In those cases, we source from other areas, mainly UK, EU and South America. Regardless of where the supplier is located, we have a very robust Supplier Assurance Program that ensures that we purchase only from approved, high quality suppliers. 

      We thank you again for your comments and hope you continue to enjoy our products.  If, at any time, we can be of further assistance, please don't hesitate to contact us again."
    • Hey guys!  I have been suffering from NCGS for almost a year, and have recently been diagnosed with IBS.  Although I was finally getting used to the gluten free routine, this has been really hard to get used to.  I'm currently having a major flare, so I'm off pretty much all fodmaps (although mainly beans, dairy, nuts, and gluten). Additionally, my stomach can't handle more than a 1/2 cup portion per meal, and even then, I'll occasionally have pain after eating.  Does anybody have simple, fast meals that they could share? As if this isn't restrictive enough, I'm also allergic to eggs, so I'm pretty much living off smoothies, rice, and allergy free chicken sandwiches.  I know this is pretty restrictive, but I thought that if anybody could help, it would be you guys.  Thanks!  Claire 
    • Great advice everyone! So the envirokids gorillla munch by natures path is safe?. As for cinnamon Chex is that ok too? 
    • Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place. I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now) Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride. I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried. As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.
  • Upcoming Events