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Marlene

Member Since 22 Aug 2006
Offline Last Active Dec 18 2007 08:32 AM
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Posts I've Made

In Topic: Please Help....getting Very Frustrated With Continued Symptoms

18 December 2007 - 08:31 AM

I have been on the gluten free diet since July 1, 2006 and casein free since September of 2006. My blood tests came back negative for Celiac and I never had the biopsy. I was diagnosed through Enterolab. While I did improve somewhat after cutting out gluten and dairy, I am not better. I did the whole scrutinize every label, make sure everything is gluten free including personal care items etc etc.

I have finally figured out that my problems come from a dysfunctional liver and pancreas. I just don't have the enzymes that I need to digest food and my liver gives me constant grief. I have found that avoiding foods which are difficult for the liver to digest (you can find lists on the web or try to get hold of the liver book by Dr. Sandra Cabot -- also on the web) has helped me. I am also experimenting with different digestive enzymes to try and find the right one for me. Just because something is gluten/casein free doesn't mean that it won't bother your digestive system. I found this out the hard way.

Personally I believe that if you don't have Celiac, there is something else going on which is causing your problems. I don't even think I've gotten to the bottom of what is really wrong with my body at this time but I will continue to work away at it until I do. In the meantime, I am doing what I can for my liver/ pancreas. BTW, chocolate is one food that really causes me problems -- it's very hard on your liver. I ate Hershey kisses this past weekend too and I am paying for it now.

I would encourage you to keep digging until you find out what your problem is. Good luck.

Marlene

In Topic: You Need To Read This

29 November 2007 - 08:23 AM

So I posted my results on a Hemochromatosis forum and basically said "It's been nice knowing you, I don't have this, all the best" and today I got a response from a lady in Australia. Apparently over there my results would be considered towards the high end of normal and could be indicative of Hemochromatosis. Not only that, she told me that even if your numbers are in the normal range, you could still have the mutated gene and experience the symptoms of Hemochromatosis.

I am going to start donating blood on a regular basis (since bloodletting is the only treatment for this disease) and see what happens. I might also request the gene test from my doctor. I wish this whole thing was more black and white rather than a "you might have it or you might not" situation. Sounds like what some of us went through trying to find out if we were gluten intolerant!!

Take care,
Marlene

In Topic: You Need To Read This

28 November 2007 - 11:35 AM

Nora,

Sorry I don't know the answer to your question but there is lots of info on the internet that might be helpful.

Hey all,

I just got the results back from my doctor's office and apparently I do not have hemochromatosis. I feel like crying and am trying to hold myself together because I am at work. I just want to know what is wrong with me. After all these years, plus the last 1 1/2 on the gluten/casein free diet, I still don't have any answers. I know that my liver is dysfunctional and my pancreas does not seem to be making enzymes like it should but I don't know what is causing it. Meanwhile, my liver is just burning today and I just want to give up. Interestingly enough, my symptoms became much worse after I had my gall bladder removed and I read a post on a hemochromatosis forum where someone else had exactly the same thing. I don't get it.... all my symptoms fit and as my doctor said, I have all the markers for it.

Well before I start crying (again) I think I better get back to work. Meanwhile, I hope all this information on Hemochromatosis will help someone else.

Take care,
Marlene

In Topic: You Need To Read This

26 November 2007 - 07:38 AM

Hi Loraleena,

The tests required for this are serum iron, ferritin, and transferrin saturation. The last one is especially important. You can have normal ferritin or iron levels but your saturation level can be elevated. Or you can have low ferritin levels and still have iron overload. There is also genetic testing available but some doctors don't recommend that since they are not entirely sure what mutations are all involved in this disease. Usually it involves the C282Y gene. There is quite a bit of info regarding this on the internet.

Some people will also have elevated liver enzymes. This means that the iron is already doing permanent damage to the liver. Some people will develop diabetes because the iron also affects the pancreas. However since the symtoms can be so vague and varied from person to person, it can be difficult to diagnose without the proper testing.

Take care,
Marlene

In Topic: You Need To Read This

21 November 2007 - 09:36 AM

Apparently you can be aneamic (sp?) and still have hemochromatosis. It's not necessarily the amount of iron you currently have in your blood but how much iron does your body store? There is an iron panel test consisting of 3 different components which needs to be done. My GP only asked for a regular serum iron test which according to her came back "normal". She had this test done the day after I finished my period so of course it was normal. I am going back again this week to get the proper testing done. I have noticed that the first few days after my period I usually feel somewhat better but as the month drags on, I get worse and worse. Also, some of my symptoms showed up when I was pregnant so therefore I was not menstruating and losing blood every month.

I've been reading another forum from the Canadian Hemochromatosis Society and it's amazing how many people on there had IBS as one of their main symptoms. Also, the average amount of time it takes to get a diagnosis is 9 years and/ or 3 different doctors. It is estimated that among Caucasians, specifically from North European descent, there could be as many as 1 in 200 or 1 in 300 who have this.

I can't wait to get the testing done. It would certainly be the final piece in a very difficult puzzle.

Marlene