Sticky Blood-Hughes Syndrome Support
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Diet ...which is best??

Im sure this has been asked over and over again,and i have took heed and reduced my gluten wherever possible but here is my problem, i think im just thinking and reading too much and going slowly insane with it all....

I get and understand and there is a lot to be said with a gluten free diet,and made changes to the effect. Some research says wheat is bad and all grains should be banned some say we need it. I have looked at 'what our ancestors ate' and although there is a lack of evidence that it is actually correct, i sort of get that we should eat what our ancestors ate-there is a lot to be said for 'modern illnesses' and eating what we do now as opposed to then. I have looked at the GI diet,and understand that spikes in our levels can result in auto immune responses. I have looked at omega 6 high intakes and not enough omega 3's that are invoking immune related illnesses etc in the modern diet, and have really steered towards this one and made lots of changes i.e cook only with coconut oil,eat high omega 3 oils (hemp,walnut) things that are liquid in room temperature and do not heat these. I understand that we dont need refined sugars and I bake with blackstrap molasses. I totally get that we need to eat only good unrefined less messed about with foods-but some research says beans and lentils which ive used for a while are great ,others say we cant eat them. Some research says we need to revert back to full fat butter and milk-not low fat and chemical margarines and hydrogenated oils which now even supermarkets are slowly banning,some say that these fats are good and a bit of high cholestrol is protective to our immunity-its like sandbags protecting our immunity. I have for a while cut down on milk, i only use organic cows milk, and oat milk and cream for cooking,and coconut chocolate milk instead of normal hot chocolates. Above 80% cocoa is good for antioxidants. Seeds and oils like chia,flax and hemp are all good sources of protein and fatty acids-why on earth do i not feel right about it all?? Ive even started to source only grass fed butter,cheese and milk all organic. Does anyone know what the healthiest milk/cheese alternative is or if this is something we should actually be eating? Sorry for the long one guys x

10 Replies

Doesnt help with this hughes cos as soon as i read something i forget it again .........


Hi there, I've been eating clean for over 2 years now, meaning I don't eat processed foods and I feel great. As far as gluten goes I eat it in small amounts in the form of whole grain wheat flour that I bake into bread or other goods, I also use gluten free coconut flour, almond flour and have recently started using einkorn flour which has less gluten than regular wheat. My feeling on these things is we know our own body best and how certain foods affect you. Through healthy eating I manage my symptoms very well and maintain a stable INR. I also eat and drink grass fed animal products. As far as fruits and vegetables go I buy the dirty dozen only organic, others I try to buy local and stick with trying to eat a rainbow of fruits and vegetables daily. It is also important to remember that what works for one person may not work for another and you need to do what is best for you. Hope this helps. Jen


Hi Jen,thanks so much for your reply- i think were along the same lines,which makes me feel better- i make my own bread,and just wasnt sure if organic gluten free flour was better than wholemeal with gluten in it,but you use wholemeal for your bread too. I think wholemeal has more nutrition,but wheat has had a lot of bad press lately. I have been baking biscuits in the form of coconut flour but the taste of coconuts is a bit overwhelming in biscuits,though ok for muffins,and the rice flour i tried was too crumbly for biscuits- i may try again with spelt or wolemeal for biscuits too again. I think organic is the way forwards as this how we all used to eat before cheaper oils were used and low fat products and extra sugar added to make up for the loss in flavour which is when a lot of these major illness and cancer rates went up, it makes sense. Its just such a shame these days that we have to pay extra for the privelage of eating healthy how everyone used to eat just because we dont want chenmicals in our food, its should just be the norm! Thanks so much for your time x


Of course, nearly everyone acknowedges it is best to avoid sweet drinks, lots of empty carbs, a diet of exclusive pre-packaged foods

But all that "other" dietary advice?

We all live inside our greater, and regional cultures and markets. And to achieve balance in our lives we must live within our own regional market.

All the dietary information is confusing and I have found that trying to pay attention to all the data is overwheliming, and also, pretty much impossible.

I am GF because I have a gluten sensitivity. Eating it makes me feel bad, and since going GF all my antibody levels, and most of my inflammation markers have returned to zero. AND -- and this has made a huge difference in my life -- my hemaglobin and hematocrit levels reached "normal" after being anemic ever since I was age 4.

Back in my old college days, when I was in my late teens,I remember I had to stop twice to pant before making it all the way to the 3rd floor of Furman Hall where the Classics Dept. was. On a trip back about 10 years ago I walked from 1st floor door up to the 3rd to visit with old professors without stopping once ! (Even taking steps 2 at a time!) Thanks to my GF diet, at age 48 I was in better shape then I was at 18.

So for me, the GF difference had been extreme and even though it is easier to bake with wheat flour I have not been tempted in the slightest to return to eating wheat. I seriously follow the diet because for me, the health stakes are high.

BUT . . . But -- not everyone has issues with gluten. My husband and my children still eat gluten -- it does not seem to effect them at all. It is possible that they could be healthier avoiding it -- or not. It must be an individual choice. I cerrtainly can't tell them their RBC will be better on a GF diet (as mine is) becuse they all have perfectly normal RBCs.

One daughter recently discovered she has an egg allergy. So for her, -- no eggs. Which doesn't mean that I shouldn't eat eggs-- just that when she visits I should not offer her an omlett for breakfast.

Much of the healthy eating advice : dairy or not? organic or not? cooked veggies or raw? olive oil or coconut oil? -- must be broken down to individual needs and choice. Its easier (and cheaper) to eat the Mediterranean Diet if you happen to live in a Mediterranean country. Here in the US it is easier and cheaper to eat seafood if you live in a costal state.

Read what the experts have to say. But go with what works for you.


And another thought:

If autoimmnune issues or wigggy blood work prompt you and your doc to think you should try a classic "avoidance" diet so you can ID and then eliminate potential food sensitivities, then you should seek a doctor or a nutritionist's advice and follow the avoidance program they present. You may find that for you, gluten, or dairy, or nuts, or soy, or tomatoes and eggplant are best avoided.

And then you'll have your own, personalized expert advice about what diet is best for you.


great advice and ideas- i just,like anyone in this situation,want to do things that help reduce inflammation,or at least not aggrevate things by eating healthier options,and for my children too - environments are enough poisons without adding bad things we eat in to the equation x


I recently visited an allergist. She told me to eat what I normally eat & she will test me for allergies to food & medications. I have been doing the diet thing trying to see what causes more inflamation but it seems to be all over. I can eat the same things everyday & still flair. It is very frustrating & drives me crazy. I have went glutin free & still flaired. I the problem is everyone is so different. I think you have to experiment or be tested like I am. Designer16


I have periods where im aneamic,and vitamin d deficient,interesting line of thought that some foods can make certain vitamins and minerals not be processed properly-my body also doesnt 'process' folic acid either, I have ibs also, I just tried reading up and see if anything shouted out at me but there is so much conflicting advice I just get confused! Good to hear others' perspective of it x


My husband has APS, and his INR has not changed in twenty years. He eats cheese, drinks milk, and loves anything with white flour in it. Something I've phased out of his diet over thirty years. You should see him gazing suspiciously at things I take out of the oven:). You can replace milk and cheese if you so desire, with soy milk, and soy cheese. But, for me the taste is important, and soy milk is a hard sell. You could switch to goat's milk, if you can find it. I'm more connected to basic foods though, and they seem to make my husband happy as well as healthy. Butter, locally made cheese, it all tastes so good.


Thanks amelia2323, im steering towards local produce too i think, ive found coconut milk,and oat milk is the nearest taste wise that i can get away with switching to if disguised with the kids, and i have been buying organic milk and cheese,but im trying to find a local source for these instead of supermarkets xx


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