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Just When I Thought I Was Doing Good
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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!

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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.

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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!

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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.

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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.

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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!

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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.

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Keep us posted on your test results.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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