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

Have you looked into liver dysfunction? Try googling it. Apparently if your liver is not functioning properly, you will have problems absorbing vitamins and nutrients - especially the fat soluble ones. Lots of people with gluten intolerance have dysfunctional livers. Unfortunately, routine liver tests won't always show that there is a problem.

Hope this helps,

Marlene

Just wanted to share with you my experiences regarding Homeopathy. I went gluten/casein free last July 1 after testing positive for gluten/casein sensitivities with Enterolab. I had also had blood tests done for Celiac before I went gluten free and they came back negative. My gene testing did not show any genes for Celiac so that makes me non-Celiac gluten intolerant.

After about 4 months of gluten free and improved health, I started to notice that I wasn't feeling as great as I had been. I went to a Naturopathic doctor and she treated me as if I were Celiac and gave me Homeopathic drops that really screwed me up. I became much worse after that. Her bubbly receptionist kept insisting that I would get better but it would take time (I was calling in constantly asking what the heck was wrong with me).

I started going to an excellent Homeopathic doctor here in Ontario in January. He is well known and people from miles around come to see him. He told me that my food intolerances (can't eat eggs, onions, green peppers anymore either besides gluten and dairy) are not the problem but a SYMPTOM of my problem. He said that so often people think gluten intolerance is the bottom line, they take gluten out of their diet, feel great for a while, but then other foods start to bother them. They end up eliminating more and more foods as time goes on without getting to the root of the matter. Well, that made me sit up and listen because I think he is absolutely right with that. This does not apply to Celiacs, by the way. If you have Celiac, the problem is gluten itself and your body's response to it. Once the gluten is removed and healing takes place, you will be better.

Homeopathy treats your symptoms which is so great because you do not need a definite diagnosis before you can begin treatment. The Homeopathic doctor I am going to has been treating my symptoms and I am happy to say that I am doing much better. It is not an easy process though because homeopathy is holistic and very specific to the individual. What works for me won't necessarily work for someone else.

I just wanted to share this with you because there are so many people on this forum who have eliminated gluten (and other foods) and are still not getting better. If your intolerances are symptoms of another problem, you won't get completely better until you get to the root of the matter. Something to think about.

Sorry this post is so long. I just think it's worth mentioning. If anyone does want to look into homeopathy, it's a good idea to make sure you go to a recommended homeopathic doctor who knows what he is doing. There are some natural practioners (like the Naturopathic doctor I went to) who mean well but are not knowledgeable enough when it comes to homeopathy to come up with the correct remedies.

Take care,

Marlene

Oh, I can soooo relate to all of this. I got major diarrhea once at a special dinner from my husband's work, plus once I didn't make it to a bathroom after eating out for our anniversary and ever since then, I get this anxious feeling about eating in restaurants. Now that I am gluten/casein free, we never eat in restaurants. If anything, we'll pick up some "safe" food and eat it at home.

I still get pretty anxious and panicky about certain situations. I often have to talk my way through the grocery store because I had a bad experience there once too. And, yup, I get anxious about getting a haircut.

Part of my problem is because even though I have improved a lot on the diet, I still get flare ups with diarrhea. I think I have Crohn's or something like it.

Just typing about all this gives me that "oh no!" feeling. Our brains and our guts are definitely connected!

Hope you can overcome this problem, John. Just realizing there are more of us who go through this might give you some reassurance. It is a good idea to have some immodium with you. Sometimes just having it in your pocket takes away the "what if..." anxiety.

Take care,

Marlene

Hey,

I have been gluten/casein free for 9 1/2 months. While I have seen major improvement in some areas, I continue to struggle with upper abdominal issues. I get this upper abdominal pain sometimes accompanied by nausea. The pain can last anywhere from a few hours to a few days or even a week. Spicy foods, acidic foods, caffeine, chocolate, and stress really seem to aggravate it. It seems to get worse when my stomach is empty. I am also still losing weight. I have gone from a size 12 to a size 6 in the last year and a half. I still feel tired and often weak.

I really think there is something still wrong with my small intestine/duodenal area. Ulcers, maybe?? I had a blood test for H Pylori about 1 1/2 years ago. It came back negative. However, I have learned since then that if you are taking Pepto Bismal (which I was practically living on at the time) you can get a false negative.

I really think I should get an endoscopy and biopsy of my small intestine to see if there is anything else going on. As much as I can't handle anything stuck down my throat. Do they put you completely out for this procedure? I really hope so.

Any similar experiences or advice for me?

Thanks!

Marlene

I don't know about you, but I find this diet can be so isolating. The girls from my office just went out for lunch and did not even bother to ask me if I wanted to go -- I probably wouldn't have been able to anyways since I think they are going for pizza. I just find that at social functions (which always seem to revolve around food) I end up having to eat something different from everyone else.

Even at home, I feel so isolated sometimes. I try to cook meals that we can eat together whenever possible, but a lot of times it just doesn't work out. Sometimes by the time I get my food ready, the family is half done their meal. They are not trying to be rude, but they might as well eat while their food is hot instead of waiting for me, right?

I could go on with more examples but I think you get the drift. Does anyone have any suggestions or ideas? Is this something that I am just going to have to learn to live with?

Thanks a lot,

Marlene

Yes, there are other causes of leaky gut. This is why I am wondering which comes first. If something else causes the leaky gut which in turn causes food intolerances (gluten, casein specifically), does this mean that once the gut heals the individual can start eating those foods again?

I guess unless you know for sure that it wasn't gluten causing the leaky gut, it would be insane to start eating gluten again because the cycle would just start over.

I've read that leaky gut causes intolerances and also, I've read that intolerances cause leaky gut. Kinda like the chicken and the egg.

Marlene

I have been doing quite a bit of research on Leaky gut syndrome. One question I have not found an answer to yet is this -- Does leaky gut cause intolerances due to food etc passing through the intestinal wall or do intolerances cause the gut to become leaky through inflammation? I guess this question would apply more to those of us who are non-celiac gluten intolerant.

Looking forward to your responses.

Marlene

First I just want to say that you must be one of the nicest friends anyone could have!! That is so sweet that you are trying to help your friend.

I know how devastated I felt when I found out I could no longer have gluten and totally understand what your friend is going through. And then about a month later, I found out I can't have dairy either. I used to love food so much. I really had to grieve over all the things I can't have anymore. I have been gluten free since last July 1. Please tell you friend that what she is feeling is normal. She should just let herself be upset and grieve over this. Please also tell her that things will get better. She will find good food that she enjoys, either naturally gluten free or made especially that way. The first time I tried gluten free bread, I started to cry. But now, I have found a few that I really like and even found a mix that I make myself. It will get easier, honest. Also there is someone on this forum who has a newbie kit. I am sure someone else will be able to tell you how to get to her through this forum -- I can't think of her name right now. Once your friend gets over the shock, she will probably find that there are a lot of things that she can still eat.

One more thing, you mention that you have irritable bowel syndrome. I don't mean to scare you but tons of people who have gluten intolerance/celiac were first diagnosed with IBS. Personally, I think IBS means that you have an intolerance of some kind. You might want to get that checked out.

Marlene

Hi there,

I just read your post and wanted to encourage you. I went gluten free July 1 and casein free in September. After 6 days I stopped having diarrhea after almost every meal the way it had been since the spring. However, I would still get bouts of D. It has been a roller coaster. I have good weeks, bad weeks, but not terrible weeks like I used to have. I believe this is all part of healing. As your body heals, toxins and bad bacteria die off. This may cause your symptoms to flare up again. If you google about healing you should find some pretty helpful sites.

Also, I would advise you to take a really good digestive enzyme. It is also extremely important to take a probiotic. Get one which is enteric coated -- that way, it'll get past the stomach acids and into your intestines. One word of caution, you will probably go through a healing cycle once the probiotic begins to work. Hang in there -- it could last for 7 to 10 days but afterwards you should begin to notice a difference.

I know that I naively thought I was going to get better in a few weeks after going gluten free just by things I had read. I was so discouraged when that did not happen. I would drive myself around the bend trying to figure out what I could have possibly eaten that I was reacting to. But I would continue to eat the same foods and lo and behold, I felt better. I knew it wasn't the food. Having said that, of course there are some foods that might cause irritation other than gluten or dairy. Example - spicy or acidic. Some people do have multiple intolerances which may go away once healing takes place.

I read a book by an excellent author (can't think of her name right now) she has Celiac and states that many Celiacs start eliminating all kinds of food from their diet because they think they are "reacting" to them. While this may be a possibility, it is also very possible that they are just going through the healing cycle.

Hang in there, stick to the diet like crazy and you will get better. It may be up and down but don't forget they say that it can take an adult up to 2 years to heal.

Also, try not to analyze how you are feeling every minute. I have done that as well and that also drives me crazy. Just try to relax and allow yourself to get better.

Take care,

Marlene

Hi Curt,

I know everyone is different but it helps to hear other people's experiences. I started the gluten free diet on July 1st and limited my dairy. After about 6 days, the diahrrea stopped. Then about a week later, I would have another bout of D. I went crazy, trying to figure out what I had eaten that could cause this. In September I went completely dairy free as well. And as before, I would have weeks where I would feel some improvement and then go back down again. It has been somewhat of a roller coaster. So after all these months, I actually have weeks where I feel phenominal. But then I have a bad week again. IMHO, I don't think it's necessarily because I am eating something I am intolerant of. While certain foods do irritate my poor intestines (acidic, spicy, etc), I believe the roller coaster effect is in fact caused by the healing process. Sometimes we need to feel worse before we feel better. Case in point, when I started using a very good probiotic, after about a week some of my symptoms came back. At first I was so discouraged and tried to figure out what the heck was wrong with me. I did not change my diet just to see what would happen. Then a week later, things went back to normal and I was doing much better. Probiotics can cause the body to detox and bad bacteria to die off. The healing process does the same thing. As your body heals, it will get rid of toxins and bad bacteria. While this is going on, you might feel worse or at the least, not see any improvement.

I know there have been others on this forum who have had similar experiences. I have stopped freaking out everytime I feel worse and I no longer drive myself crazy trying to figure out what I could have eaten that is causing me to feel that way. I stick to the gluten/casein free diet completely, avoid irritating foods, and for the rest, am just going to give my body time to heal. Afterall, I figure it took me 40 years to get like this, it's going to take some time before I am completely healed.

Marlene