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Marlene

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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

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Hi, I have read about it before on the thyroid websites. I think the hemachomatosis websites say the gene test is best.

What is the prevalence og hemachromatosis?

My ferritin is like 37 or so but I am from northern Europe, half at least.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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:o Wow, this is fascinating! The things we learn here............ I will definitely file this away.

When I was diagnosed w/ Celiac my ferritin level was 2.5......... tired is not even the word for how I felt.....at the one-year mark it was 17. Life gets better and better all the time. :)

I was quite fortunate in that gluten removal was the answer for me......but there are so many others for whom this is not the only culprit. Thanks for posting this!


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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I have the opposite problem...too little ferritin!!! I am going for more Iron IV's next week actually.

Thanks for the info though.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Thank you for posting this. One of my colleagues has this, and she has also recently been diagnosed with diabetes. I was wondering if she should be tested for gluten problems, but I don't think she has any obvious food intolerances. Most of her symptoms seem to be extreme fatigue and headaches.

I'll happily pass on to her whatever info you post!

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kassandra, in the old days they only had iron shots in the bum, and they worked fine, too. But they hurt. Have you tried them?

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Nora_n,

They are not enough iron for me. I have no ferritin in my body, so they need major heavy duty iron, one shot is equivalent to about 1/5 of an IV and I am going to have 8 IV's. <_<

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Thanks for thinking of me. But my ferritin right now is in the optimal level, at 105. I used to be severely anemic. So, no, I definitely don't suffer from iron overload. It is very rare in women, especially when still menstruating, as it is almost impossible to get iron overload because of losing blood every month.

But men have to be careful not to take vitamins that contain iron (unless diagnosed with low ferritin levels due to malabsorption, of course), as iron overload is common in guys, and quite dangerous, as you obviously know.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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There is this hemachromatosis thread over at the delphi forum too:

http://forums.delphiforums.com/celiac/messages?msg=63918.1

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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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

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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

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I was wondering, like, if someone has a chronic infection or a temporary infection, the body hides away iron (because iron is good food for bacteriae or something like that)

What would the tests look like for someone like that (and at the same time having hemachromatosis of course)


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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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

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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

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