Sticky Blood-Hughes Syndrome Support

Celiac disease?

Does anyone on here have this as well as aps or sle? I’ve tested positive and having the biopsy next week. Can this blood test be ‘skewed’ because I have a pre existing auto immune condition. Any thoughts anyone?

Lynzy

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Hello, most of us with Hughes Syndrome/APS end up with a gut problem, lucky for you it has shown up, some of us find out we are gluten intolerant, rather than having full blown Coeliac Disease. I have been gluten free a number of years now, and it has made such a difference. MaryF

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Thanks Mary, the gastroenterologist had found other ‘stuff’ he wants to talk to me about before the biopsy next week that he detailed in his letter to me. He found these on the ct scan and re-examined it when this blood test was positive. Haven’t a clue what these other things mean so I’m going to wait until I see him and let him explain. He has said they explain every symptom I’ve told him I have. Thanks again to my haematologist at guys for noticing the signs and referring me, otherwise I’d be still be suffering as my gp told me there was nothing wrong with me!

Thanks for taking the time to help mary

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Hi Lynzy,

What anticoagulation drug are you on for your APS?

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Acenocoumarol, and cleaned when Inr drops below 3

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Clexane. Predictive text sorry

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It is not unusual to have more than one autoimmune conditions. I have SLE, APS/Hughes and I also have symptoms of inflammatory bowel disease.

Your gut has a sensitivity to certain foods and now this has been diagnosed, you will be advised accordingly.

I don't know what you mean by "skewed" - are you doubting the diagnosis?

My advice: talk with your doctor.

I appreciate that this can feel very overwhelming,which is why talking with your doctor can be very helpful.It is more than possible to live with all these diagnoses.It is tough, but with the right support, they are manageable. At the same time, it's "normal" to have a wide range of feelings. You also need psychological support,along with the medical.

With good wishes,

Ros

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I haven’t had a diagnosis yet, I have the biopsy next week. I just wondered if already having two autoimmune conditions may alter or give a false positive result for another in some way. I do have other conditions, related to aps and neurological also. My haematologist and neurologist at guys are great and always available for me if I need them. I haven’t seen the gastroenterologist since my appointment in November and received this nes in a letter which asked would I agree to the camera and biopsy and it went from there. I’m having the biopsy Friday and I’m at guys the Monday after so I can talk about all of this to them as well. The gastroenterologist listened up here and contacted my haematologist to coordinate the procedure next week.

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I am glad that you have such good help from your Doctors and a very good response from Ros. Hope you will stay with us here.

Kerstin

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Hi Lynzy. I was diagnosed with Coeliac disease when I was about 32. It wasn't until I was 41 that I was diagnosed with APS, and apparently APS and Coeliac disease go hand in hand along with Rheumatoid arthritis, which I also have. I have quite a lot wrong with me, and I have no idea if it stems from APS or something else. I hope you get on ok with your test. Good luck Trey x

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Oh I also take acenocoumarol it's the only thing my inr will settle with but I think it's good run maybe coming to an end with me as inr hasn't settled down for about 6mths now. The joys of APS .... Not. 😟

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Thanks for all your replies it’s much appreciated. I’m probably hoping the biopsy will be negative as otherwise it will have a big dietary impact. I think I’ve had my share from the sweets bag of medical conditions. I like you have had a very unstable Inr count, so was changed 5 years ago to this drug. Just a week before this procedure it’s gone haywire after behaving for a few months. On a serious side I also have epilepsy, mitral valve disease, factor v Leiden, and have suffered strokes tia’s, and various other clots in my lung and legs over the years so to contemplate any kind of invasive procedure wasn’t easy. The surgeon also details other problems found on the ct scan he wants to discuss next week as they will have a further impact on my existing conditions he says.

People do say to me ‘you don’t look ill, you look great’ , so it’s not all bad is it!

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As I have posted before, I have become quite the convert to functional medicine, which has as its primary focus, the belief — based on burdgeoning biochemical evidence — that the Sandard Western Diet is the usual cause of autoimmune conditions AND cancer!

Her’e’s a short summary of the process:

Gluten is the undigestible protein. Yout body just can’t use it. But your gut tries, and it ends up cutting the gluten into 2 strands which are still larger then other nutrients your body actually needs and uses. These strands then are able to sneak through the gut/blood barrier, but again, they are unusable proteins so your immune system steps in and says “Bad Actor! Attack!!” And this haappens over and over and over as most of us eat gluten containing products often.

And since the immune system is on constant overdrive and inflammatory mode the chances of an immune “accident” increases — hence the rise of autoimmunity as in our case, the hyper-active immune system confuses platelet and capillary linings as an “enemy” and atttacks.

Some — most?— people never suffer an obvious autoimmune mistake. But it does happen a lot. Most functional medicine practitioners - who delve waaay deeper into the hormone and biochemical dominoes — believe that gluten and excess surgar and carbs are the functional root of nearly all chconic disesess.

So — knowing this may help you go gluten free. Yes, you can do it. I feel so much better since going gluten frree, and there awas such a difference in my inflammatory blood markers, that even though I “passed” the gluten tolerance test, every doc I have tells me to stay gluten free.

Feel free to message me if you would like more details, supporta or suggestions.

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I was diagnosed as Celiac at 27, and showed antiphospholipid antibodies at 29, had a TIA so Dx APS at 34. I'll leave out the rest for brevity. At the time, Celiac was a devastating diagnosis. Now, it's my easiest to manage!!! No meds required, no bloodwork, no doctors visits, no adjustments to make when treatments fail. Celiac is constitent, and black and white. Eating gluten makes me sick, not eating it makes me feel better. If you have struggled with your INR fluctuations, you may find that once you cut gluten, you can get more content numbers bc you don't have malabsorption as an additional variable in your INR. Malabsorption in your gut affects how everything else works. It's rough at first to go gluten free. I'm 9 years GF, and it just isn't a big deal anymore. There are so many more GF options now, and more come out every day. If you get this diagnosis, consider that maybe youve found a really important key to getting well!

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Thanks for your advice. I’m not ‘jumping the gun’ but we've been looking at gf foods and yes it’ll just be a few additions/omissions from my food as we eat mainly fresh meat/fish with either vegetables/salad/rice/pasta. It’s the incidentals that you don’t realise with gluten I’ll have to look at. I know Heinz ketchup is gluten free, so I can still have a dip for chips!! My Inr has never been stable and I’ve been on anticoagulants for 19 years. My stomach problems only began about 2years ago.

How long after your biopsy was done did you get your diagnosis?

Lynzy

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