Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just When I Thought I Was Doing Good
0

8 posts in this topic

Don't know if Fabry has any connection to celiac. Received my tests back and I have borderline results and because of the symptoms I have been displaying I am being sent to a genetic clinic for further testing. Fabry is a genetic disease that lacks proper enzymes to break down fats in the body like it should. These fats build up in the body and cause brain damage, kidney failure, strokes, and nerve damage. This was not easy news to receive as I had been doing so much better on my no grain, no sugar diet. I am trying to focus on the positive and realize that there are things docs can do about this to help. I guess what gets me is knowing that it is systemic but that doesn't mean that something won't get me first. The average life span for someone who is diagnosed in childhood is 41, average life span for someone who has older age onset like myself possibly, is 74, so that is not bad. We me luck guys, I could REALLY use the support right now!

0

Share this post


Link to post
Share on other sites


Well, I'm definitely thinking of you.

I'm very saddened to hear this is where you are at right now.

I will pipe up and say if you are doing better you should keep doing what you're doing - because better is better.

I will be thinking of you and hoping for the best.

0

Share this post


Link to post
Share on other sites

I just happened to run across your post. I had also just posted tonight earlier. What caught my eye was the what you had written about yourself & conditions, at the bottom of your post. I thought, wow, you have really dealt with a lot. Then, when I read the body and subject of the post itself, my heart just went out to you. You may be feeling down, obviously, and for good reason, but you are definitely an upbeat type person. Rereading thru your post, you are a real encouragement and fighter! Yes, there are times when everything looks bleak but sometimes when the attitude stays up, sometimes things turn out better than expected, or if not, then the trials we have are at least easier to bear and for others around us to bear. I was diagnosed with MS 22 years ago. I had actually had it since I was a child, but just never had an attack that caused enough damage that it could be diagnosed before that. I was told all of the fears of wheelchairs, how I would age so much faster, have a shorter lifespan, etc. I really gave up on myself for a while but then I got upset and decided I was thru with living like a sick person. So, I have been a happy, healthy person with MS for the last 20 years. Educating myself with what I needed to know to deal and recognize the problems I was having really helped. But now, at age 57, I don't look like the 87 year old I was told I would look like. I enjoy life and I want to continue to enjoy every minute of it. I square dance with people in their 80s that have much more life than many people I know that are in their 40s. It is all in their attitude. It is good to see you reaching out for information. I also was at a point where I was holding my own. Then some extreme stress kicked in and I had a major MS attack. Now a bunch of other things hitting at once. But we can't give up. You encouraged me. We just keep learning and helping each other and really living life. Thru it all, we'll all keep cheering each other along. Everyone can do more when they are being cheered on. Keep posting on how you are doing and what you find out. Your good attitude will no doubt help others along the way like it did me tonight!

0

Share this post


Link to post
Share on other sites

Fabry is a new one for me so I will google to learn a bit more about it. You have been such a contributor especially in my early days with my own problems! One more hurdle but eventually the hurdles must end or at least get lower in height - hopefully not at 71. Another condition to add to my/our "chicken or egg - which came first" (ie what is the underlying cause vs symptoms). Thinking of you.

0

Share this post


Link to post
Share on other sites

Don't know if Fabry has any connection to celiac. Received my tests back and I have borderline results and because of the symptoms I have been displaying I am being sent to a genetic clinic for further testing. Fabry is a genetic disease that lacks proper enzymes to break down fats in the body like it should. These fats build up in the body and cause brain damage, kidney failure, strokes, and nerve damage. This was not easy news to receive as I had been doing so much better on my no grain, no sugar diet. I am trying to focus on the positive and realize that there are things docs can do about this to help. I guess what gets me is knowing that it is systemic but that doesn't mean that something won't get me first. The average life span for someone who is diagnosed in childhood is 41, average life span for someone who has older age onset like myself possibly, is 74, so that is not bad. We me luck guys, I could REALLY use the support right now!

I hope they find you don't have it, but at least if you know about it, it can be treated? It's a hard pill to swallow for sure! :o

You're a tough cookie..and you've been through a lot. I have no doubts that if it turns out to be Fabry, you'll kick it's ass! That shortened life span is just an average, and as you know..there are people that don't do anything to help their conditions (making the average lower), and there are those like you who educate themselves and deal with things head on (making it higher).

Please let us know what they find out with the genetic testing/treatment plan?

Fingers crossed for you.

0

Share this post


Link to post
Share on other sites

I just happened to run across your post. I had also just posted tonight earlier. What caught my eye was the what you had written about yourself & conditions, at the bottom of your post. I thought, wow, you have really dealt with a lot. Then, when I read the body and subject of the post itself, my heart just went out to you. You may be feeling down, obviously, and for good reason, but you are definitely an upbeat type person. Rereading thru your post, you are a real encouragement and fighter! Yes, there are times when everything looks bleak but sometimes when the attitude stays up, sometimes things turn out better than expected, or if not, then the trials we have are at least easier to bear and for others around us to bear. I was diagnosed with MS 22 years ago. I had actually had it since I was a child, but just never had an attack that caused enough damage that it could be diagnosed before that. I was told all of the fears of wheelchairs, how I would age so much faster, have a shorter lifespan, etc. I really gave up on myself for a while but then I got upset and decided I was thru with living like a sick person. So, I have been a happy, healthy person with MS for the last 20 years. Educating myself with what I needed to know to deal and recognize the problems I was having really helped. But now, at age 57, I don't look like the 87 year old I was told I would look like. I enjoy life and I want to continue to enjoy every minute of it. I square dance with people in their 80s that have much more life than many people I know that are in their 40s. It is all in their attitude. It is good to see you reaching out for information. I also was at a point where I was holding my own. Then some extreme stress kicked in and I had a major MS attack. Now a bunch of other things hitting at once. But we can't give up. You encouraged me. We just keep learning and helping each other and really living life. Thru it all, we'll all keep cheering each other along. Everyone can do more when they are being cheered on. Keep posting on how you are doing and what you find out. Your good attitude will no doubt help others along the way like it did me tonight!

Your journey is very uplifting, thank you for sharing. I am really trying!

0

Share this post


Link to post
Share on other sites

Did my genetic testing this week, 6 weeks and I will have an answer. I have done some reading since and have found that some people have been misdiagnosed with celiac when really they had Fabry's Disease.

0

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
      102,714
    • Total Posts
      914,527
  • Topics

  • Posts

    • Secret Deodorant
      I never worry about deodorant.  The only things you really need to worry about are things that might get in your mouth.  I get shampoo in my mouth so I read the ingredients.  They will say if they have wheat germ oil in them.    http://www.cureceliacdisease.org/archives/faq/will-my-skin-breakout-if-i-use-topical-products-like-shampooslotions-that-have-gluten-in-them   "Gluten must be ingested to be cause for concern for someone with celiac disease. We still recommend those with celiac disease avoid contact with gluten, especially with products that have the potential to be ingested. Small amounts of gluten can be found in many cosmetics, lotions and shampoos. Avoid product ingredients that literally say “wheat,” “rye,” “malt” or “barley.”  "
    • Secret Deodorant
      Most toiletry products are fine even if they have wheat/gluten in them.  The main issue is not to ingest them!  Many folks with celiac disease are careful with shampoo, conditioner, soap, lotion, lipstick, lip gloss, hair products,  and sunscreen because they could be accidentally swallowed (if you chew on your nails, etc.).   I have used Crystal Deodorant for 20 years now.  It can last for years!  Seriously!  It is pretty effective but not as effective for a teenager.   My entire family uses it, but my teen uses regular antiperspirant too.  You can find it at Whole Foods, Sprouts, healthfood stores, and even a "roll" on version at CVS.  Of course, Amazon carries it too and the price is comparable to the stores.   I found some mini travel versions at Marshalls (but that is hit or miss).  I like the solid crystal option the best.  I really like Gabriel Lipstick found at Sprouts.  I buy it on sale.  It is certified gluten-free, so I never have to worry!  I hear that Red Apple (sold online) is very good too and is certified.   I hope this helps!  
    • Anyone Else Feel A "lump" In Their Stomach?
      Hi chinup,  I know it's been a while, but I was wondering if what was the diagnosis.. Please let us know.  Thank you! 
    • Tests done, waiting for CT Scan and Biopsy appointments
      Hello, I have been reading a lot of posts while waiting for some of my test results to come back.  So thankful for the information I have found so far! I have completed my blood tests and other lab work.  Complete allergy tests came back positive for all in the bread/cereal profile.   One of the gene tests for Celiac came back positive and one other test came back high, even though I was not eating Gluten at the time of my lab work.  Back eating a small amount of gluten daily and have CT Scan and biopsy appointments scheduled for the near future.   I was wondering if anyone else is where I am as far as the testing.  I have had quite a few symptoms return quickly after going back to eating gluten.  The next day I had a migraine headache for the entire day, went to sleep and woke up with another headache that wasn't quite as bad.  Prior to my appointment,  I was only gluten free for 2 months and was really starting to feel great.  Three days into eating gluten stomach cramps returned.  Also on a Low FODMAP diet.  Unfortunately had to go back to eating it for the biopsy test.   Please reply if you are in the same spot as me as far as testing for Celiac.  Thanks, Sheila 
    • Secret Deodorant
      where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,759
    • Most Online
      1,763

    Newest Member
    KJDx
    Joined