Hi.... my doctor here in the states is continuing her education and adding nutrition and herbs and the such for remedies. She came back from a four day class where she heard them actually mention APS and they were saying that GLUTEN does trigger it and flares. It is recommended of course to AVOID gluten and gluten products. Even the stuff dentists use when filling and dental work - have gluten! To off set this it is recommended to take N.A.C. 3 times a day. (found in healthfood stores, vitamin shops, GNC etc...long words - use N.A.C. - its easier!) I started taking it yesterday. I'll keep you informed.
debi in Fl w APS
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hasmoxie2
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Do you mean N-ACETYL CYSTEINE. If so people on Warfarin should consult there GP first as this also thins the blood and is not a good ides for people with Asthma or some other breathing conditions as well.
I have APLS and Celiac and it sure certainly jives with me that there could be a relationship. But there are limits to gluten sensitivity. I forget the exact number, but in the EU a gluten free product is established to be at something like 1:64million. Here in the States gluten free is defined as no detectable gluten whatsoever. But youu see, the EU standard is based on medical tests and evaluations as to how much gluten can cause a biological effect. The States standard is asked on lawyers arguments who are eager to win damage awards.
I have found this distinction to be practical in my life
. Gluten free is certainly challenging at first -- but you'll learn to adapt.
Hint: the most egregious, hidden glutens are found in MSG seasoned products, and a lot of soups. Read labels! And just because that sauce was GF the last time you bought it, don't assume it will stay that way.
Also, after much experimentation, I find the best restaurant line to be, " I have that inconvenient gluten/weat allergy. I will try to order items that do not contain gluten. But please, check my choice with the chef, and if I've made a mistake, come back and correct me."
I think gluten can irritate most autoimmune conditions, I have found a distinct improvement in allergies in general since becoming gluten free, however I am aware to be careful about blanket statements being issued from any form of website, as we are vulnerable as patients to such statements if taken out of context. Mary F x
Thanks for your input. I'm in the States and am glad for your doctors information. Don't know what it is like in the UK but here in the States the doctors receive very little education on nutrition and supplements during their many years of training. It is sad and does not help us, the patients. It is changing, slowly, yet still depends on the school the doctor goes to. It remains up to us to research extremely carefully.
Yes, NAC can react with Warfarin, and many other drugs. If you are taking blood thinners this needs to be brought to your doctors attention because it sounds as though she is doing her best to educate herself. Any supplement has the ability to interact with a medication, or a condition, just as a prescription medication does.
That aside, tests on NAC show promise for a number of neurological situations; I take it for brain fog and neurological reasons (stroke survivor). I take 1 400mg tablet daily, and my doctors know about it. Don't think they understand it, but I've done the research myself and know how much I can take, when to take it (in morning and w/o food). It is not easy to do this research, but it is vital if one is going to put something in ones system - my opinion.
The gluten information is very interesting. I may try it. I do know whenever I have sugar I have a very hard time and my diet is low gluten, but heck, perhaps going gluten free would give me more health!? It surely would be worth it.
Sorry...I'm on Fragmin so I take it for granted about everyone else! Yes - check w/ your doctor. These are brand new studies and research. She did explain what it did and how it counteracts the reaction - but that's doctor talk and was above my head! I just wanted to pass on info I thought might be helpful. Some many out there are having problems with their doctors, are on meds I FEEL they don't need, not on the med I FEEL they DO need and confused and I think we need to take care of ourself. I've had this doctor and disease for over 10 years and Fragmin is the only med I'm on - NOW I do take Herbs and supplements...I'm in my mid 50's so I think I am doing pretty good - no TIA, kidney failure, strokes, no more DVT(last 2003) no more embollisms(2003) - have to say I trust her.
And I appreciate it! I'm in Michigan..... it's getting cold, but today is gorgeous. Sounds as though you are doing really well, that's great. Are you on a gluten free diet??
As much as possible! It's in things we don't even know about. The past month I've been having dental work done - and feeling really drained and feel like I went into a flare. I had to have a root canal, it wasn't my first, but you always are a little nervous - so I thought being nervous set me in a flare. Then my doctor said there was GLUTEN in dental materials! Who knew? Wait until I tell my dentist!
debi in Fl w APS
ps.. thats for the "vote". I was thinking of not posting anymore - but then how do we learn!
And from what my very excellent UK nutritionist has led me to believe.. once off gluten if that is a needed path for some improvement, then you can become more sensitive to it when you have it again, although some people after many months in some cases can start having it again, however I feel that now off it I will not be back on it. Mary F
Question, dear!? Do you cook a lot??? You eat so gosh darned good. I am soooooo tired and do best able, but it is not easy. Don't do junk food, no, but still not easy to go total gluten free. Well, let's be honest here, I haven't yet tried. Not 100 percent!
Maybe it is time to give it a go.
And, yes, what we post here is important, I shall keep that in mind. Thank you.
Hi there, yes I do cook a lot, my children are not well and of course myself, but I do have many short cuts, and I also eat many fresh foods, and I also take a very strong probiotic for my gut and have done for years. I do make up job lots of things at times. Mary F x
Re gluten in dental material: but does your body actually absorb any of this gluten? Root canals inevitably jar some gunk loose from the tooth and send it into circulaion--which then kicks the immune system into a flair. (For that matter, any tooth cavity or soreness is related to systemic inflammaition, whiich is why there is a link tying people who do not floss with higher risks of heart attacks.) Gluten only causes a problem if it is iingested. So , I find I do not have to scrutinize my shampoo or my soap for gluten problems -- just so long as I do not eat it!!
Hi..No disrespect taken - but I'm glad my doctor has an open mind and is trying to learn more about foods and diseases. She didn't "google" this because these are classes you get credit for like Nutristionalists and Herbologists, along with Doctors of Chinese Medicine. I am glad APS is finally being talked about. This has been my doctor since I was DX'd with APS and was one of the only doctors around who was familiar with this disease, and because of this disease, is trying to learn more ways of treating it - by learning what might be causing it. ISN'T THIS WHAT WE WANT?!
There has been a lot of debate on here with regard to diet and exercise etc, we all find our different ways through it, and of course some foods really cause problems with INR,
I am lucky enough so far to only be on a good dose of aspirin twice a day. I also follow an exceptionally healthy diet with now gluten free added in, I believe that gluten does appear to make various allergies worse, however to say that gluten triggers APS I feel is too much of an unfounded blanket statement. As admins one of our jobs is to check information and that includes statements which come in for suggested reading.
From my own reading and also from seeing a nutritionist I understand that we can develop over time antibodies to gluten, which I believe I probably have developed. As said by APsnotFab and also many autoimmune specialists, people often tend to collect more and more autoimmune conditions as they go along in some unfortunate cases.
So yes we do all want to learn about different treatments but there also has to be some sensible caution exercised.
I was just passing on "NEW" info from the medical community that was confirming that GLUTEN did indeed trigger APS. I thought it to be of interest to the world!!
Will be discussing this with my gp as am willing to try, am having Gastro problems at the moment.
Interesting info hon, will always be wary of supplements etc though, as have had severe interaction in the past, so am careful and always take doctors advice.
Thanks! You know, I don't like to admit it, because so many other things bother me, but my intestines give me trouble. I'm going to give this a try for a couple of weeks, just as you say. First off is to use up my health foods which are gluten! ..... already have done some reading. This sounds good, glad to have been part of this blog today.
Not so sure? Why wouldn't it affect you if it gets in your blood? I know now they make Gluten free make-up, lipstick, shampoo , body lotions.. etc. Must be something to it?
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