Marlene

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

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

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

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

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

This especially applies to non-celiac gluten intolerance but I think it would be helpful for everyone to know. I am gluten/casein intolerant but not celiac. One of the many doctors I have seen over the last few years told me that either people are gluten intolerant because of Celiac or else there is another underlying cause. So I kept searching for answers. Also, even though the diet has been helping me, I am definitely not better which made me think that something else must be going on. I am currently being tested for Hemochromatosis. My doctor is pretty sure that I have it and I wonder how many of you have it as well. This is a genetic disease in which the body absorbs more iron than necessary. Over time the organs which begin to store the excess iron are the liver, pancreas, heart, joints, skin, adrenal glands and thyroid. As these organs begin to suffer damage the result is extreme fatigue, digestive disorders, joint pain, etc. etc. It can lead to diabetes, liver failure, and heart problems. It can be fatal if not treated. Personally, I have a dysfunctional liver which is what is causing my food intolerances, chemical intolerances etc, and digestive problems. I also have joint pain and fatigue. This made me think of so many of you (Ursula, for example) who suffer from fatigue, joint pain, and numerous food intolerances. This disease especially affects people from North European descent (I am Dutch). They figure that 1 in 200 people have it but it is severly underdiagnosed. My brother was recently diagnosed with this and that's when I decided to pursue it with my own doctor. Testing is simple - a blood test to find out iron levels in your blood. Treatment is usually phlebotomy which is where they take a pint of blood from you on a regular basis, depending on how much iron overload you have. Anyway, I just wanted to let you guys know this and hopefully it's the answer some of you are looking for. Take care, Marlene

There is a very interesting article on www.CBC.ca under the Health section regarding Autism and the gluten free/ dairy free diet. It's so encouraging to see how scientists/ health communities are finally understanding and researching the connection between diet and health problems. My Mother went on a special diet years ago because of breast cancer and was told by the Cancer Society that she was crazy and they would not monitor her. They are now promoting a similar diet along with conventional treatments for breast cancer. Too bad it takes them so long but lets look on the bright side, at least they are now researching and acknowledging the connection. Marlene

Just wanted to add my 2 cents to this discussion. I have a bottle of L-Glutamine at home which indicates on the label that you should not take it if you have hepatic encephalopathy which is a liver condition. Since some of us have liver dysfunction of one sort or another, I would advise that anyone who wants to take a supplement should ask their health care provider first (whether that be a MD, Naturopath, Homeopathic doctor, etc.) It also states on the label that you should not take it if you react to MSG or are pregnant or nursing. I understand how exciting it can be when one of us finds a supplement that does wonders for us. However, I think we all have to apply it to our own situation as has been previously stated. The bottom line us that we all want to be better and we all want to help each other get better. Let's hope we all get there soon!! Take care, Marlene

Thanks for the replies. If anyone else has any experience with this, I would love to hear about it. I am starting to think that a dysfunctional liver might be why I have not healed as much as I'd like to on the Gluten-free Casein-free diet and why I continue to react to so many different things -- including smells. Ravenwoodglass, I am very sorry to hear about your twin brother. Take care, Marlene

Hey, Does anyone know about liver dysfunction and how it can cause intolerances, sensitivies etc? Or does gluten intolerance cause liver dysfunction? Anyone have any experience or done any research in this area? Thanks, Marlene

Thanks for the help guys!! Marlene

I posted yesterday under other intolerances etc. My post was regarding liver dysfunction and multiple intolerances. I can't find the post anywhere. Can someone let me know where it's been moved to and or it wasn't posted for some reason -- computers can do weird things and maybe it's floating around in cyber space somewhere. Thanks!! Marlene

I have been doing a lot of research into dysfunctional liver and have found out some rather interesting information. Personally, I wonder if this explains why some people take longer to heal on the gluten free diet and why some people never really seem to heal completely. Dysfunctional liver can cause a number of symptoms including: gall bladder disease, food intolerances, chemical sensitivities, fatigue, brain fog, etc. etc. Many of us have had our gall bladders out, started the gluten free diet, and then found we had other intolerances. Could it all be traced back to dysfunctional liver? There are articles on the internet (one of them on celiac.com) which state that undiagnosed celiac can cause liver dysfunction. I wonder if in non-celiac gluten intolerant people it is actually a dysfunctional liver which contributes to gluten intolerance?? Dysfunctional liver is one of those things which can be subclinical and common liver tests won't show anything. (That sounds familiar!) I would love to hear any feedback you might have on this. Has anyone had testing for dysfunctional liver? Does anyone know about liver dysfunction and food intolerances? Thanks alot, Marlene

OK, now I feel like a real dummy. Not only did my last post end with "rolleyes" or something like but I checked a few posts down and found the information that I was looking for. Hee hee. So feel free to ignore last post. Thanks! Marlene

I just read another post on this forum which mentions Joan's gluten free Greatbakes bagels. I tried to find something on the web but I can't. Is there a website to order Joan's products from? Are they available in Canada? I used to have these great whole wheat bagels for lunch almost every day before I went gluten free and I still miss them. Finding a good substitute would make my day!! :rolleyes Thanks! Marlene