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

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
Ads by Google:
Ads by Google:


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
Ads by Google:


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

Keep us posted on your test results.

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
      107,080
    • Total Posts
      934,209
  • Member Statistics

    • Total Members
      64,679
    • Most Online
      3,093

    Newest Member
    Mandreatos29
    Joined
  • Popular Now

  •  

  • Topics

  • Posts

    • thats so exciting! let me know if you need any help with finding gluten-free products or brands when you move here
    • I have had NO breath tests done. Just  blood, stool, colonoscopy and endoscopy. I'm sorry. I'm feeling so discouraged. I just know its going to be put down to IBS. And I personally feel  that IBS is a throw away diagnosis when no one wants to investigate further. 
    • Also, have you been tested for H. Pylori infection?  I think I have seen that many ulcers can be attributed to that. It is also diagnosed with a breath test.  Hang in there. Many people have been in your shoes.  I wish it were easier.  
    • Another thing to investigate is SIBO (small intestine bacterial overgrowth). It can cause all of these symptoms. There is a breath test to check for it which any GI doctor should know about, although you have a better chance of knowledge at a teaching hospital.  There's a lot of new research in this area. Here is more information: http://www.siboinfo.com/overview.html The current thought is that many IBS cases are actually SIBO. The treatment requires antibiotics (standard or herbal, both work) and dietary adjustments to reduce fermentable carbs so as not to feed the bacteria.  If it is very advanced, it can take multiple courses of treatment and for some people it seems to be chronic. There is always an underlying cause. Food sensitivities and malfunctioning migrating motor complex are the two big ones. Also structural problems with the intestines that slow motility is another.  There is a high prevelance of SIBO in gluten intolerance. My theory is that it is the neuro toxicity of gluten in susceptible individuals that slows gut transit and sets up a perfect condition for bacterial overgrowth.  But I'm not a doctor  I just have a daughter with chronic SIBO and gluten intolerance that manifests itself in neurological symptoms.   You might want to look into it.  The above website is a treasure trove of information. 
    • 1. My thyroid was tested and is in the normal range.    2. I'm not taking any medication so nothing to interfere with test results.  3.  My endoscopy showed multiple ulcers and that's what the GI chalked up to my very rare ibuprofen use. I use ibuprofen maybe once a month if that.  4.  I'll check into anything to figure out what's wrong     I got my Celiac test back today. It showed no evidence of Celiac disease. So I'm back at the drawing board. I did another stool test today also.   
  • Upcoming Events