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APS and leaky gut

monticello profile image
13 Replies

Hello all,

I am writing regarding my daughter who has APS. She has been taking rather large doses of Coumadin for about 20 years now. She eats a very healthy mostly vegetation and mostly organic diet. She has recently had a blood test that revealed a severe sensitivity to very many types of food. Her Doctor suspects that this might be a sign of "leaky gut". I read that blood thinners such as aspirin can cause bleeding or permeability in the gut. I was wondering if her medication is the cause of her new problem. Does anybody here know about this, and if so, what can be done?

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monticello profile image
monticello
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13 Replies
lupus-support1 profile image
lupus-support1Administrator

I’m sorry to read about your daughter. IMHO, the only person to ask is her doctor. I’m not dismissing your concern, but only her doctor can give an informed opinion about your daughter’s condition.

Wishing your daughter a speedy recovery.

With good wishes,

Ros

monticello profile image
monticello in reply tolupus-support1

Thank you, Of course her doctor will be taking further tests and has sent her to a gastro specialist. but in the meantime I would like to hear from people with a similar situation

lupus-support1 profile image
lupus-support1Administrator in reply tomonticello

Pleased the gastroenterologist is involved. Knowing that your daughter isn’t “alone” is also important. Watching your child suffer is the worst any mother can experience. That's one of the reasons places such as HU are so necessary and important.

I sincerely hope your daughter’s condition is resolved as soon as possible.

With good wishes,

Rod

Star13 profile image
Star13

My immunologist told me there were very few if any true blood tests that can tell if you have allergies or sensitivities to foods. Most of them are a waste of money. The usual ones that show true allergy to eggs, lactose etc are ok but anything else that claims to show IgG should be looked into closely.

I’ve never heard of blood thinners causing food sensitivities. I have heard of people developing things like SIBO which can cause food sensitivities. If you get treatment for the SIBO then many of the sensitivities improve. The best thing to do if she has symptoms is to consult a gastroenterologist.

Annslack profile image
Annslack

Sorry to hear that your daughter is going through all this. I know that aspirin has been associated with bleeding, however APS people are usually on the baby dose . Leaky gut is a complicated issue. Coeliac disease can be a factor . I think there are many potential causes and treatments that could be explored.

There is a lot of new research on gut bacteria and it's impact on health and also on ultra processed foods, many of which are marketed as natural or healthy. I have had my eyes opened after listening to Dr Chris Van Tullen talking about his work on this.

Most importantly , the risks of thrombosis are being managed by the anticoagulation so any change in medication needs expert guidance. I expect that the doctor who prescribed it can provide reassurance and advice.

I hope that this helps and that your daughter can find a safe and effective approach to her gut health issues.

Ann

GinaD profile image
GinaD

I was diagnosed with APS and have been on warfarin ever since. That pill has become my life saver. But despite warfarin addressing my blood clotting issue, I continued to have extreme fatigue and leaky gut issues. Then, I discovered I had a gluten sensitivity. I found this out by trying the Atkins Diet (which rules out carbs) and I felt like I was living in a brand new body! Sensitivities/allergies can stad at fthe forefront of autoimmune issues. I would suggest consulting with a dietician or a doctor and try diets wherein the usual allergens are avoided. That practice may reveal the primal source of autoimmunity as well as leaky gut causes. I remain on warfarin,, but since going gluten-free all my APS blood markers have crashed from high (triple positive) to normal.

Alessandra001 profile image
Alessandra001 in reply toGinaD

Hi GinaD, this is very interesting. How long it took you to see some effects? And what about the blood markers?

Thank you!

GinaD profile image
GinaD in reply toAlessandra001

My energy level went from "12 hours of sleep at night plus 2 naps a day" to tons of energy in less then a week! I went gluten free in 2004. I remain on warfarin and find I do need some probiotic and lots of fiber (prunes! PRUNES WORK!) in order for my GI track to behave. One more discovery: nerves in the GI track deteriorate with age. A great doctor up at Cleveland Clinic perscribed consultation with a gastric specialist physical therapist. And now, when I do those planks on the floor then my GI track behaves normally. When I get lazy and refuse to do those exercises I can have all the symtoms of IBSC. Floor exercises? Or pills and surgery? Hummmmmm.

Pooky7 profile image
Pooky7

hi. Not sure. But I had leaky gut. Naturalpathic fixed it. I eat organic and grass fed beef/organic chicken

GinaD profile image
GinaD

I felt better after just 1 day on Atkins Diet.But I know that speed in level of improvement is rare. Still.... finding out if and what your gut hates does trigger systemic metBolic improvement. It was a good 5 years after going gluten free that I had my next APS blood tests -which were negative. Dr. Hughes himself has noted a correlation between undiagnosed gluten sensitivity and APS. But there are other possible food sensitivities, which is why consulting with a dietician or a doctor in on functional medicine is helpful. After going gluten free, a Cleveland Clinic Functional Med doc was susicious that I had another food allergy and I did an "elimination diet." It was a real pain to follow, but in the end ... we discovered I had a sensitivity/allergy to cashews. CASHEWS? Of ll things.... CASHEWS? And since then I also eliminated cashews from my diet, (as well as doing pelvic floor dysfunction exercises) and most of my gut problems have resolved. (OF course, if I get lazy and omit my exercises for a few days the constipation issues begin their unwelcome return until I get back on the floor and do those planks.)

MaryF profile image
MaryFAdministrator

I think her doctor is right to look into this, for myself, gluten was causing dire problems, so stopped eating it years ago, also worked hard on the right probiotics, as I had a lot of antibiotics as a child. I am much better these days, but still have to work at it. MaryF

monticello profile image
monticello

Thank you all for all the valuable information. It really helps to learn from other people's experience. It is very interesting to hear about all the connections of APS to gluten sensitivity! My daughter is still waiting for her appointment with the gastro specialist. In the mean time she is avoiding gluten and the foods that the lgG test showed her sensitive to. She is feeling some improvement. Thanks again

Annslack profile image
Annslack

That's very good news. Many of us have had huge benefits from going gluten free, not just with gastro symptoms too. I found my energy levels increased significantly.

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