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gfpaperdoll

Hemochromatosis

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"Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested."

quote from Hak1031's signature

It would be a miracle if your mother does not have celiac or gluten intolerance. I hope you get her to change her diet right away. The hemochromatosis genes go right along with the gluten intolerance genes/celiac. Have you read the little blip about the celtic curse? you should google it. Very interesting. the celtic blood runs stong. I see it in my children & all 6 of my grandchildren. My father died very young, run over by a drunk driver in his early 30's. I never knew him but I have a couple of pictures & he had a beer belly & was overweight. His older brother had died from Hemochromatosis 6 months before he was killed.

forget the testing for your mom - well unless she does not want to go gluten free & live a few more years. & before everyone gets all upset, well you can test her, but if it comes back negative, well you know that will wrongly prove to her that she does not have a problem (!!!) & you are a nut case. I think even with colon cancer if she adopts a GRAIN FREE, DAIRY FREE, SOY FREE, diet that she will get better.

I am double DQ1, my mother died from colon cancer. My personal theory is that the people that carry these genes unknowingly seek out other people that have the same genes. Everytime I meet anyone that I really like right away - turns out that they are part Irish... I know that my mother had undiagnosed celiac, she also had diabetes, had severe anaphalactic reactions to foods the last few years. Many calls for the ambulance because she took just one little bite (one little bite is not going to hurt is what she kept telling the ER people) of tomato & her face would swell up like a basketball...

I hope your brother will get serious & test his genes. & has he had the gene test for hemochromatois? You do know that it is another genetic illness, right? Have you been tested for Hemochromatosis?

Thank you for putting this in your signature. I need to figure out how to put a sig on my profile etc. It is good to get the word out about hemochromatosis, especially amoung the people with celiac in their families, because it runs so rampant in the celiac community. everyone I know who has hemochromatosis also has celiac.

I did meet a Webb, my fathers name, a few years ago - he came to tow my car & he looked so much like my family that I took his picture & got his family names etc. I know that we are related because he & his family have hemochromatosis. He did not know about celiac - so I clued him in & he was very interested because all the men in his family have all these illnesses that we are all too familiar with.

Any Webb's or McCann's in your family tree?

Thank You & I hope your mom changes her diet & gets some relief from the suffering...

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Thanks for the info. My mother got the celiac blood test a week ago, and, suprise suprise, it was negative. I am trying sooo hard to convince her to go gluten-free, and she's a little reluctant but not entirely against it. The thing is she would only have to make a few changes to her diet- no bread or beer. Anytime she makes pasta it's gluten-free for me, and she doesn't really eat crackers or anything like that. Plus she likes my gluten-free baking :)

She is cancer-free now, after having a large portion of her intestines removed a few months ago. But she has not recovered fully from the surgery, and I have tried SO hard to explain to her how going gluten-free will help her.

I have read about the genetic links between celiac and hemochromatosis (man that's a pain to spell!) and I think it's very interesting. It's similar to the way that sickle cell anemia is so prevalent because the same gene also makes patients immune to malaria. But the celiac/hemochromatosis link is even more interesting as it's so codependent. My mother's side of the family is western European, namely Irish and Sicilian, among other things. That's the part of the world where celiac is most prevalent.

My mother has not been officially genetically tested for hemochromatosis because of the stupid insurance company, but has her iron checked periodically, as do my brother and I (neither of us have ever had elevated iron). I also don't eat much red meat or other really high iron foods.

As far as I know, no Webbs or McCanns though :)


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Thanks for the info. My mother got the celiac blood test a week ago, and, suprise suprise, it was negative. I am trying sooo hard to convince her to go gluten-free, and she's a little reluctant but not entirely against it. The thing is she would only have to make a few changes to her diet- no bread or beer. Anytime she makes pasta it's gluten-free for me, and she doesn't really eat crackers or anything like that. Plus she likes my gluten-free baking :)

Please do try to encourage her to try the diet. I so wish doctors didn't let people think that those tests are the end all of the diagnosis line. I am someone who does not show positive in blood testing and the doctors never even told me anything about the diet. Oh how I wish they had. I lost of lot and so did my family during all those years of repeated negative blood tests, ten years. My kids spent their whole childhood watching me slowly die when a dietary trial would have told all. If only I had known that a dietary trial could have changed so much. Please, if you can, get her to come on here for a bit. Hopefully my story and the ones of others may help to convince her to at least give the diet a good try. It can be hard but it is so worth it when we get our lives back.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Please do try to encourage her to try the diet. I so wish doctors didn't let people think that those tests are the end all of the diagnosis line. I am someone who does not show positive in blood testing and the doctors never even told me anything about the diet. Oh how I wish they had. I lost of lot and so did my family during all those years of repeated negative blood tests, ten years. My kids spent their whole childhood watching me slowly die when a dietary trial would have told all. If only I had known that a dietary trial could have changed so much. Please, if you can, get her to come on here for a bit. Hopefully my story and the ones of others may help to convince her to at least give the diet a good try. It can be hard but it is so worth it when we get our lives back.

Wow--now I want to check out my iron levels too. I recall having high levels when I ate lots of raisins plus iron makes me constipated so I avoid it. I also don't seem to need to take vitamin C--my tests always show high levels and I am allergic to most citrus and pineapple. It really messes with my urinary tract and I get redness, swelling and flaking in my nethers. I can have red meat now and then but not for long.

Yes Celtic and North European. Scottish Garths and Campbells however and Swedish Sunds and Swiss not Irish McCann's.

And yes I am always cleaning out my liver with herbs even though I don't drink alcohol and have a very good non gluten diet. Of course my right kidney is half gone which doesn't help.

I think the celiac alone and malabsorption tends to be hard on the liver. Maybe there are degrees of these conditions?

In any case this celtic curse is very interesting. It shows how just one generation can affect so many others. Or maybe this happened more than just the once with the potato famine?


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I keep nagging my mother (who is now b12 deficient...hmmm...) and I now gave her the site and told her to poke around. In the event that she gets an account (unlikely) nag her for me!! lol but anything else I should tell her to make her go gluten-free? Her thyroid problems, btw, are Hashimoto's. And she was diagnosed with IBS a while ago, which we all know is a BS diagnosis. sigh... we all know how hard it is to watch relatives kill themselves when they could fix it so easily...


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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In any case this celtic curse is very interesting. It shows how just one generation can affect so many others. Or maybe this happened more than just the once with the potato famine?

This has certainly been happening for longer than just since the potato famine. But it was only 'discovered' in Holland after war restrictions on flour were lifted and folks who had been forced onto a gluten free diet started getting sick when they were able to eat gluten again... Can we all say gluten challenge :D

Celiac folks are found all over the world It is more of genetic difference than than a defect. It also has a very different genetic inheritance pattern than defective genes. If you pop the gene results we have into a good search engine a great deal of interesting stuff shows up. That was how I found out my gene is supposed to be a RA gene here, a psoriasis gene in Turkey, and a celiac gene in Japan. Do be warned though once you start researching in depth it can be addictive and quite depressing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Tell your Mum, if it makes her feel any better that EVERYONE is to a greater or lesser degree intolerant of gluten - they just don't know it!

Gluten, along with dairy (and sugar), particularly cow's and particularly 'mucked about' with pasteurised and homogenised, damages the gut and stops it being able to absorb nutrients properly. Any malabsorption, even low level will impact on the cells in the body. If the cells can't get the nutrients they need in order to regenerate and heal, they start to break down. When they start to break down, we get sick. Simple as that.

What illness we have depends on our genetic vulnerability. Your Mums' thyroid problem will undoubtedly be due to malabsorption as will her other problems. It is never picked up because the Medical Profession isn't either interested or looking for it. If it can't be treated with a nice fat expensive commercially money-raking drug, it is swept under the carpet.

Celiacs must be the most annoying patients of all, as the only treatment they need for their condition is a change of diet!

We are programmed from the minute we are born to eat dairy and gluten based products. All it takes is a little 'thinking outside the box' and we are away.

At least your Mum has you to support her, and you can work together on it. That will be so good, as 'two heads' are always better than one!


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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This has certainly been happening for longer than just since the potato famine. But it was only 'discovered' in Holland after war restrictions on flour were lifted and folks who had been forced onto a gluten free diet started getting sick when they were able to eat gluten again... Can we all say gluten challenge :D

Celiac folks are found all over the world It is more of genetic difference than than a defect. It also has a very different genetic inheritance pattern than defective genes. If you pop the gene results we have into a good search engine a great deal of interesting stuff shows up. That was how I found out my gene is supposed to be a RA gene here, a psoriasis gene in Turkey, and a celiac gene in Japan. Do be warned though once you start researching in depth it can be addictive and quite depressing.

Hi Raavenwood,

I was refering to hemochromatosis vis a vi the potato famine. Though they say often the two conditions go together though certainly not always.

But yeah, as far as celiac goes our "disease" isn't really a disease in the usual sense since its just that our forebears didn't make the adjustment to eating the gluten grains 15,000 years ago. In some ways our condition makes us superior since its more likely we won't get bacterial or parasitical infections very easily as compared to the rest of the population plus we do better than others staying physically active longer and dealing with emergencies etc. i.e., more in tune with the old hunter gatherer life style. If we all went back to eating a more paleolithic diet most of us would be amazing.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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