Is it possible I have Haemochromatosis?

Just a thought about the DNA testing for haemochromatosis - the testing that is usually done checks for only one or at most a few of the most common types of haemochromatosis-causing mutations.  There are quite a few of the less common types.  Therefore, you can test negative for the most common haemochromatosis-causing mutation(s) and still have one of the other types of hereditary haemochromatosis that the usual genetic testing doesn't cover. 

In my case, I don't have the C282Y mutation on the HFE gene - the only haemochromatosis-causing mutation tested where I live in Canada.  This led my haematologist to tell me he didn't think I could be iron overloaded.  Fortunately, my rheumatologist and other older doctors who had been in practice before the days of gene testing for haemochromatosis knew iron overload when they saw it and I was started on phlebotomy to as a test to see if I was iron overloaded or not.  I was:  about 7.5 litres of blood had to be removed over a year and a half until I was de-ironed.  (It took longer than usual because I have a type of haemochromatosis that involves impaired iron recycling, so as my iron came down, I had to wait longer than usual in between phlebotomies for my hemoglobin to come back up enough for the next phlebotomy.)

Sorry Gillian I didn't realise this was to me. It is such a complex condition and I for one only know my own experience. You have a broad knowledge and am sure you will be of more help to bettybetter.

Hi Ellen,

I think you were absolutely right in your advice to get gene testing for hemochromatosis - the test will at least check for the one most common genetic cause of hemochromatosis and depending on where Betty lives, might even check for one or two more as well.  I just wanted to comment that if the test comes out negative for the gene(s) checked, it unfortunately doesn't say anything about all the genes that the test didn't check.  There's quite a long list of genes that cause iron overloading but that aren't tested for except in research studies - and researchers keep finding more genes related to iron metabolism every year.

I also couldn't agree more with you about the importance of working with one's own doctor (or doctors) to figure out and fix what's going on.  Most of the time, that does the trick.  But if in the end, the doctors are stumped, then that's when we patients can end up stuck doing as much medical detective work as we can.  If this happens, that's where a forum like this can help, by all of us sharing our individual experiences.  In my case, because I have one of the more weird - er, less common - types of hemochromatosis and stumped my hematologist,  I found myself doing a lot of digging in the medical literature.  (I also do similar digging on behalf of friends who have other kinds of doctor-stumping problems.)  I share that sort information too when I think it might help someone in working with their doctor(s).

So I think each of us knows different things and the more we can share together what we know as a group, the more likely it is that at least some of what we share will be useful to people asking questions.

. . . and I have to agree that humans aren’t very well adapted to a vegan diet at all – it takes a *lot* of work to stay healthy on a vegan diet.  I have seen people slowly get less and less healthy despite doing all the right things in terms of supplementing with b12, zinc, iron (for people who don’t have the increased absorption types of hemochromatosis, that is!), epa/dha, calcium, vitamin A, choline, etc. etc. etc. plus keeping their protein intake up (a challenge in itself) – and then be amazed how much better they feel when they try including eggs, dairy, and a bit of seafood in their diet again. . . . but I don’t remember any of them having had trouble with rashes and joint pain . . .

So, um, I just did some searching on vegan diets and what do you know, some people on vegan diets have indeed posted reports of having had rashes and joint pains along with profound fatigue, all of which went away when they started adding animal foods back into their diet.

So adding animal foods back into her diet is a suggestion you made to Betty that I didn’t – and it might well turn out to be the most helpful suggestion of all!

Phew ! I am pleased I have such a knowledgable forum friend. For seven years I tried to get an answer to my brain fog and tiredness. It is tough when you think your getting dementure and doctors think your wasting their time. I hope Betty gets answers. 😐

Those people who have rashes, joint pain, fatigue could have also been low in Vit D.  Some people just cannot absorb Vit D, like some people just cannot absorb Vit B12 from supplementing tablets.  Eggs provide Vit D, but if that does not help, practitioners brand forte drops are required.

I found I could not increase my Vit D until I was put onto the drops then my levels immediately increased.  I was amazed at what Vit D deficiency caused.

 

Just to clarify, my health difficulties started 3 years ago when I was a carnivore. I ate A LOT of meat at that point. I was into body building so my protein was extremely high. I have only been vegan for 8 months and I'm currently the best I have been over this past 3 years but still not how I feel I should be.

I have also done a lot of research about veganism and there is a lot of evidence for both sides of the story... However, the funding of the 'Pro dairy' research needs to be considered as it's often funded by the dairy industry. Very few people benefit financially from people eating plants! I highly recommend the documentary 'what the health'. Of course you can be unhealthy eating a vegan diet. You could be eating bread, chips and dark chocolate all day! It's different once you look at a plant based diet which is using whole foods. Humans are very much 'designed' to eat this way due to our digestion system and teeth.

I just got a full screening of all minerals and vitamins and the only thing off was high iron and my vit d being in the low side of normal. So, no, I don't think me being vegan is the issue here. I only mentioned it as it seemed odd that my iron was so high given this is how I ate.

Thank you for your reply. This is all so helpful. In may my ferritin was 160 and is now 190 which I think is not terribly high but I did think seemed odd since I am vegan and don't take an iron supplement. I wondered if this could be the cause of my fatigue.

I have been tested for a few coeliacs after eating gluten for 6 weeks and both the blood test and endoscopy are negative. I do feel a bit better if I remove gluten but the fatigue is always there.

I will take on board the information you have shared and speak to my GP.

Thanks again.

Also, I've never had any raised markers for inflammation which has always surprised me. My C-reactive protein has always been normal.

Hmm - if you do feel a bit better when you cut out gluten, a few other things that might be worth trying – one at a time:

a) try going absolutely, totally, obsessively gluten-free, in case you are sensitive enough to gluten that even tiny amounts of it are enough to keep your fatigue going.  The most definitely-no-gluten-at-all-or-anything-that-might-act-like-gluten list of things to avoid I've found is the glutenfreesociety.org’s guideline for avoiding gluten.  Their list even includes all the weird and wonderful things that you'd never think about containing gluten, like the glue on envelope flaps, lipstick, and even prescription medication.  A gluten-intolerant friend of mine couldn't figure out why she was suddenly reacting to her diabetes medication, so her pharmacist phoned the manufacturer and sure enough, the company had started putting a wheat-derived starch in the tablets.  I was also fascinated to see that GFS also says to eliminate corn, not because it contains actual gluten but because it contains gluten-like substances that can cause a similar reaction to gluten in some people - I hadn't known that and find it interesting because I react badly to corn and things made out of corn like corn starch, although corn doesn't cause my joints to flare the way gluten does.  If you feel better following GFS’s very strict diet, then you can try adding back the gluten-free foods you miss most, one at a time, such as corn or rice (preferably rice grown in low-arsenic areas).  If you search "gluten free vegan diet" you'll find some great recipe ideas you can tweak to meet the strict GFS criteria.  Given your ferritin level and the fact that you’re eating a vegan diet, I wouldn’t worry much about avoiding iron-containing plant foods – if you want to keep your iron absorption low, just don’t take vitamin C with them (vitamin C increases iron absorption from plant foods) and do drink tea with them (tea reduces iron absorption.) 

b) cut out soy.  Some people get really fatigued when they eat soy or drink soy beverages, possibly because soy affects thyroid function, or possibly because it contains plant estrogens (aka phytoestrogens) that stop our own human estrogen from working, or possibly both.  If you feel better off all soy, you could then try adding back only traditionally fermented soy sauce (gluten-free of course), tempeh, natto, and miso.  I really miss edamame, but baby green chickpeas (garbanzo beans) are pretty close!  A substitute for commercial non-dairy milks that I like – blend full fat coconut milk and cashews until smooth, then add in some calcium carbonate (old trick from England during WWII for getting calcium without dairy, when they used calcium carbonate to fortify bread), and dilute with water to the desired consistency.  Let me know if you want the actual recipe . . .

c) cut out nightshades (tomatoes, tomatillos, bell peppers including paprika and cayenne pepper, eggplants, potatoes, I think goji berries, and tobacco – which can be used as a culinary herb to give a peppery taste).  I use grated zucchini as a substitute for tomato sauce.  Pepper (as in white or black pepper berries that you grind up) is fine because it’s not bell peppers.  Sweet potatoes and taro are good potato replacements.  Crunchy colourful bell pepper replacements in salads can include radishes, apple slices, red cabbage, red onions, carrots (especially those neat multi-coloured heritage carrots you can sometimes find) and there are lots of colourful berries – blueberries, raspberries, cherries (especially good for muscle and joint pain), cranberries, etc. etc.  Nasturtium flowers and buds are edible and give a lovely peppery taste to salads.

d) you are very likely already avoiding glyphosate, given the increasing speculation that glyphosate (Roundup used to kill weeds and/or desiccate food plants that are genetically modified to be resistant to glyphosate) may contribute to chronic fatigue, possibly because it changes the nutrient levels in the food plants, possibly because it suppresses the friendly bacteria in our guts that make nutrients for us, possibly because it messes with our hormones, or who knows what.  More research really needs to be done, but each of us can carry out a personal experiment to see if there’s any difference in our fatigue when we avoid glyphosate as much as possible.  

I hope some of this is helpful -