Gluten Intolerance And Hemochromatosis

[jeannieknits]

ok, I'm brand new here.....just wondering if any one else is experiencing the duel 'joy' of an iron overload and a gluten intolerance.

I was diagnosed, much to my surprise, with hemochromatosis (which means my liver absorbs way too much iron) around the same time we figured out I was allergic to gluten and wheat. I have read a little that says (and my GI alluded to the fact) that they may be related, but I haven't met anyone else with the same situation. I'm currently undergoing phlebotomy treatments (which are difficult due to my alarmingly low blood pressure...caused by my heart meds...that I'm on because of my atrial fib!) To 'remove' the iron-rich blood, but it is a slow process.

I guess my question is: does the gluten free diet INCREASE iron absorption? because my iron numbers have actually gone up the past 2 times I've gone in for labs pre phlebotomy.....and of course, no one can tell me why. (they should be decreasing with the treatments, and I've altered my diet to eliminate iron rich foods since the dx)

thank you for any help!

[cassP]

all i know about Hemochromatosis was that they THOUGHT my brother had it... he went in several times for testing.. then they finally had to say that they guess it was just a fluke. that he didnt have it. was it a firm dx for u??

my brother does not have Gluten Intolerance as far as i know- but he does avoid Wheat and feels better (no joint pain).

and when they thought he had it- they said he was going to have to give blood on a regular basis to keep his iron levels at bay.

??? hope someone has better answers for u!

[jeannieknits]

all i know about Hemochromatosis was that they THOUGHT my brother had it... he went in several times for testing.. then they finally had to say that they guess it was just a fluke. that he didnt have it. was it a firm dx for u??

my brother does not have Gluten Intolerance as far as i know- but he does avoid Wheat and feels better (no joint pain).

and when they thought he had it- they said he was going to have to give blood on a regular basis to keep his iron levels at bay.

??? hope someone has better answers for u!

Thanks for your reply--yes, I tested homozygous for the C282Y gene mutation (it's a genetic thing) after a positive MRI scan of my liver showed the high iron content. I'm young to have symptoms for it--but since I had a hysterectomy, and I'm a positive genetically I showed signs of it early. Very strange. (Sigh.) Anyway....yes, I give blood every two weeks and it's a bit of a trauma right now. I think I'm just worn down from the diet modifications and everything else, so it's super exhausting to go through the phlebotomy.

[cassP]

Thanks for your reply--yes, I tested homozygous for the C282Y gene mutation (it's a genetic thing) after a positive MRI scan of my liver showed the high iron content. I'm young to have symptoms for it--but since I had a hysterectomy, and I'm a positive genetically I showed signs of it early. Very strange. (Sigh.) Anyway....yes, I give blood every two weeks and it's a bit of a trauma right now. I think I'm just worn down from the diet modifications and everything else, so it's super exhausting to go through the phlebotomy.

OMG! every 2 weeks?????!!!!!! good God, i really hope they figure something better for u- that WOULD be so traumatic- i would hate that so much

i hope u find some better way of dealing with it! xo

[Mari]

About 4 years ago I remember seeing messages from 2 people who had your combination of autoimmune problems.

I searched for 'hemochromatosis celiac' - sone of the websites

Celiac Disease and Liver Disorders

Case histories show that iron overload and diagnosis of hereditary hemochromatosis often follows successful celiac treatment. Also, British patients with celiac disease showed a ...

www.celiac.com/articles/21501/1/Celiac-Disease-and-Liver-Disorders/Page1.html

[jeannieknits]

Mari,

thank you those are interesting links!

[Jme]

I was diagnosed with Hemochromatosis about 7 years ago, & was just diagnosed with Celiac about 3 months ago. I've read several studies (i found them via Google) that say that there is a link between the 2. The last study i read said that almost 50% of the celiac patients in the study had the HFE Gene.

I had a phlebotomy every week for 3 months & then one every 6 months for 2 years after that. My levels were all over the place those first 3 months (even with eating foods that have less iron-dark greens are FULL of iron). Eventually your levels will stable out & you won't need them as often. I haven't had a phlebotomy in like 5 years.

the studies stressed that the HFE Gene protects us from the most common problem celiacs have, anemia. my levels haven't gone up since being on this diet, though a lot of that will have to do with what you are eating. the gluten-free stuff is not as nutritious as their wheat counterparts. i would wait until your levels stabilize before you try and correlate them with your diet. your levels will always be higher than someone without this disorder but as long as you have your levels checked regularly this won't be a battle for much longer!!

[peter-s]

I have only just found this site, so apologies for late response, I hope that you see this. I was diagnosed Coeliac over 30 years ago. A Gluten-free diet solved so many problems, mainly in my bowel, but including apparent "Psoriatic Arthritis" in my hands and ankles. Gradually, the bowel problems have returned, despite being strictly gluten-free, although mainly as constipation. About three years ago, I was diagnosed as Type 2 Diabetic. I'm not overweight, and don't drink, so it was a surprise. Then, just over a year ago, I was diagnosed as having Haemochromatosis. The genetic tests came through in March, and I had a summer of venesections in a local hospital; I am now in maintenance. The consultant who I saw about the Haemochromatosis was incredibly knowledgeable about Coeliac disease; but officially there is no link. (so far!) The point is that Coeliac disease, Haemochromatosis and Psoriasis are all linked to Chromosome 6, location 21. I have one copy of C282Y and one of H63D, so in principle I should be barely affected by Haemochromatosis. However, I suspect that my dad had Haemochromatosis; he died at 66 from a Heart attack. I'm 65 and only just diagnosed, so I want to know the position. He probably had Coeliac disease too, but again no diagnosis in those days. One positive is that Coeliac disease reduces iron uptake from food, so it might just have offset the Haemochromatosis increased uptake. I was also a blood donor for may years, 2 units per year; that would have delayed onset. This year of venesections has been tough; it seems to have been a replay of all the symptoms I have had over the years, including joint pain in my hands and ankles, though it has gone away again. The iron in my blood, together with diabetes (caused presumably by the Haemochromatosis) and the Coeliac disease have made me very constipated; in many ways the worst symptom and so difficult to deal with. So far, links between Coeliac disease and Haemochromatosis are not made by the medical profession. It is just possible of course that it could be random chance; if 1 in 200 have Coeliac disease and 1 in 200 have Haemochromatosis, then 1 in 4000 would have both. It would be interesting to see the real number.

[christov]

Yes I'm also experiencing the dual-joy! Realised I had both gluten intolerance and hemochromatosis at around 30 years old.

 

Moving to gluten free diet made a huge difference and eliminated brain fog, acid reflux, barretts esophagus and other nasty symptoms. I also had a lot of candida at the time, which I eliminated with coconut oil and the gluten free diet.

 

The final step towards feeling great again was recent blood donation to get my ferritin down from approx 200 to closer to 100. This relieved joint pain, tiredness and lethargy, and a feeling of high blood pressure.

 

So I can strongly recommend gluten free diet, virgin coconut oil, and keeping your iron levels at the recommended levels (ferritin of 20-80 ng/ML is apparently the best range).

 

It could also be worth checking your zinc levels in a blood test as well. Mine was at the low end of the range. Taking the occasional supplement also gives a boost to immunity, energy levels and alertness.      

 

Good health all!

[GF Lover]

Yes I'm also experiencing the dual-joy! Realised I had both gluten intolerance and hemochromatosis at around 30 years old.

 

Moving to gluten free diet made a huge difference and eliminated brain fog, acid reflux, barretts esophagus and other nasty symptoms. I also had a lot of candida at the time, which I eliminated with coconut oil and the gluten free diet.

 

The final step towards feeling great again was recent blood donation to get my ferritin down from approx 200 to closer to 100. This relieved joint pain, tiredness and lethargy, and a feeling of high blood pressure.

 

So I can strongly recommend gluten free diet, virgin coconut oil, and keeping your iron levels at the recommended levels (ferritin of 20-80 ng/ML is apparently the best range).

 

It could also be worth checking your zinc levels in a blood test as well. Mine was at the low end of the range. Taking the occasional supplement also gives a boost to immunity, energy levels and alertness.      

 

Good health all!

 

Unfortunately the OP has not been on the site since December of 2010 and will not see your reply.  If you want to start a new discussion you can create a New Topic.

 

Good Luck,

 

Colleen

[COPPER99]

Hi , I just wanted to share that iron overload will cause copper deficiency , when we are deficient in copper many inflammatory responses and auto immune diseases develop celiac disease is an auto immune problem which incurs an inflammation response , I strongly suggest that you take a chelated bioavailable copper supplement and that you detox iron from your system , here are the best chelates that I am aware of for iron detox  : green tea extract , l-taurine , l-cysteine , l-methionine , and chlorella . blessings and I hope this helps you to put the body right again.

[Angie W]

I was diagnosed with Hemachromatosis 10 years ago.  I was diagnosed with Celiac Disease 4 years ago and Chronic Pancreatitis 3 years ago.  I also have been diagnosed with Gastraparesis, Ehlers Danlos Syndrome, Sjorgren's and Raynaud's Syndromes and hypothyroid.  The Celiac Disease masked my symptoms of the blood disease.  When my celiac disease got under control, my iron numbers went crazy.  Then the Gastraparesis showed up with a Bezoar and bleeding polyps in my stomach.  That made my iron numbers plummet---Ferritin 1.5.  I had to have iron infusions that have to be done under sedation because of the chronic pancreatitis.  I always know I am going to get a call when blood labs are run.  Something is always wrong one way or another.  I only carry one gene and originally was told I wouldn't actually get the disease.  But medical science found that was not the case anymore.  A hysterectomy at a young age brought the symptoms and damage on early.