digestive issues?

[grenise]

hello I am new here, thank you for reading my post. does anyone have digestive issues because of this syndrome? I am very new at this but wondering if there is a link there, too?

thank you!

[HollyHeski Administrator]

Hi, welcome I see you have just joined. Have you had a diagnosis for Hughes/APS?

Although we dont give individual medical advice on here we do share our personal experiences and knowledge - digestive issues is a very broad subject for us, can you be a little more percific so we can try and answer your question?

I have posted below our link to our charity website, which you may find very informative.

ghic.world

[grenise in reply to HollyHeski]

i am very newly diagnosed and my dr is not very good with educating me- i am switching actually to get someone who is more knowledgeable.

sorry for beinf vague! i have always had triuble gaining weight. in the past couple of years, though, i have gotten very thin. i get a lot of stomach pain and cannot digest fats. i have been seeing drs for years who do not know what the issue is. there is actually a set of drs looking at me who are doing genetic testing. but i also know drs missed APS for years too! so i just wondered if this illness affects digestion. thank you so much!

also, i have never had a clot, i have many blood results and many symptoms. i am not on therapy since i have drs that both want different therapies. im seeing a specialist in a couple weeks.

[HollyHeski Administrator in reply to grenise]

Its very important that you get an APS specialist - top right corner we have a list of specialist per area, have a look to see if one is in your area.

Even if you haven't had a clot, you still need treatment, usually aspirin or warfrin to begin with, as you say you have symptoms, this may clear up with anticoagulation?

Where are you based?

[grenise in reply to HollyHeski]

im in orange county ny, about 1.5 hrs from nyc. i’m actually going to call dr cronwell today from mt sinai who is recommended to me by another member on this site that has been helping me.

i really would like to be on some therapy as i have so many symptoms that i hear can be addressed. i consider myself lucky to have gotten this far!

[MaryF Administrator]

Your first step is to get a decent Hughes Syndrome/APS specialist, we have them listed under pinned posts on the right hand side if in the UK, and also on our charity website: ghic.world/

Many of us find we have digestive issues, usually caused by eating gluten, and or undiagnosed or badly managed thyroid disorders. I am not a full Coeliac but definitely react badly to gluten, since cutting it out and checking all deficiencies including D, B12, Iron and also my Thyroid and adding in a probiotic, things have calmed down a great deal, however do discuss with your main consultant before adding any form of supplement. MaryF

[grenise in reply to MaryF]

thank you- i have had extendive work ups and am already on restrictive diets. i am calling an APS specialist today from the site- thank you!

[GinaD]

Many of us on this site have found that we are a lot healthier when we avoid gluten.

[grenise]

hi there - i was diagnosed with MS in 1998. i do have lesions so i think it probably is a real diagnosis. i have been gluten/dairy free since 2005. celiac is in my family so i just cleaned up my diet back then. i have not been able to properly digest food for a while now, though. i read on the website that some people get digestive issues where they get pain after eating. i get that almost daily if i eat a bigger meal. i tend to malabsorb fats also. every dr i see has worked me up to bo avail. i just wondered if anyone else had this issue. i seem to have hit the jackpot with autoimmune issues. i am not on any therapy yet for APS as i am waiting on finding a good doctor. hoping the next dr i see can set me straight. thank you all for your help!!

[lupus-support1 Administrator in reply to grenise]

If your stool is bright yellow with undigested food, this is malabsorption and should be treated!

Every patient is different and I am not a medical doctor, but I have this condition and Dr Hughes treated this as part of SLE.

Surely you were sent to see a gastroenterologist who arranged tests?

As Lynn suggests, all of this is connected with autoimmunity. You will not be getting what you need until this is treated. For example, among other things, sulfasalazine has made an enormous difference for me.

Therefore, you must see a specialist. Doctors can misdiagnose MS for APS. Doctors can also not know that vasculitis of the bowel and inflammatory bowel disease are connected with autoimmunity!

With good wishes,

Ros

[grenise]

thank you!! im scheduled to see a highly recommended GI in a couple weeks. the abdominal ischemia i will mention. my vitamin levels are all good but the fat malabsorption is extreme. NYU (im in NY) is running a full genome on me so something should pop up i suppose.

i saw the reference on the ghic website to abdominal ischemia so i will try to look further into that. thank you again!

[mariamoo1]

I can help you, I have been through this. Please message me, to remind me. I know what you are exactly saying. But I am unwell at the moment, Aps ! But my husband has urged me to contact you. No joke, and that is not him to say this x

[e-mail]

[grenise in reply to mariamoo1]

hi there i sent you a message and am hoping you are feeling better. i’m so curious to hear your answer!!

[snorkle272]

Hello. I too have had digestive problems. It got to the point that I could only tolerate fluids - nothing solid at all, because of the intolerable pain I would be in.

I had to seek private health care (paid for by me) to get the proper diagnosis. I did this in Toronto, Ontario, Canada. Sure enough it was intestinal ischemia. I had a very small stent inserted in upper superior mesenteric artery, and was able to go back to normal eating. It was day surgery.

I do have to avoid large meals, because I have "dump syndrome". I hope this information helps.

[grenise in reply to snorkle272]

omg thank you for your answer! i do not even know how to address this with a dr- but it seems to make so much sense. i have never had a clot but at this point i have eaten the same foods every day for the past year. i cannot vary anything. im not on anti coagulation therapy- i hope the dr i see will offer me something. r u on therapy? i so badly want to eat- and i read that a higher inr helps the off sensation that i live with, too.

thank you so much for answering my post!

[snorkle272 in reply to grenise]

You are very welcome. I am glad I could help. Yes I am now on anti coagulation therapy. I wasn't at the time. I don't know if anti coagulation therapy will help diminish the symptoms. I had a dye test MRI (enhanced MRI) - (I believe that was what the test was) that found the problem quickly. I had diagnosed it myself previously, and no I am not a medical professional. I am a professional only about myself. When my own doctor got the tests back he was surprised. After he wrote me a prescription for pain medication, I said to my doctor " well it only makes sense doesn't it,! If it can't be seen by ultra sound, xray , Catscan or MRI, it has to be vascular!! Right?! " He could only sheepishly acknowledge that I was right. One month later the stent was in place. I had to start out slowly with solid food, but the first time I had some vegetable soup I was in heaven. Are you drinking any protein drinks? They helped keep me from being

malnourished. Good luck to you.

[grenise in reply to snorkle272]

again, you are teaching me! i also have turned into quite the medical detective. i have had ultrasound, scans and mri and was told to just eat more and take pain meds. i paid money for extra blood work then the APS blood work showed and drs started jumping. but my MPO numbers were so high and that points to ANCA and vasculitis and still no one looking so hard. but i never put together what u r saying.

and no i dont drink anything except ginger tea and water. protein drinks make me sick and anything with fat runs through me. drs keep telling me to eat sugar and carbs- for protein i do eat 2 oz of chicken plain a day. im 5’5” and 95 lbs but was 82lbs a yr ago so trying to hold this weight.

[Lure2 in reply to snorkle272]

What do you mean with "dump syndrome"? Hope you do not mind me asking as we learn so very much from eachother on this site.

Kerstin in Stockholm

[grenise in reply to Lure2]

not sure but if it is anything like me- it refers to the emptying of my bowels many times a day after eating. my body just wont process it-

[snorkle272 in reply to Lure2]

I don't mind you asking at all, Lure2. In Canada "Dump syndrome" is when your body decides it needs to evacuate your bowels immediately, many times! Usually within less than 20 minutes of eating.

[grenise in reply to snorkle272]

oh gee i used to have time between eating and dumping but lately i am doing just that dr i saw today is setting up a new motility test for me where i swallow a sensor (not a camera) to track my difestion. not sched till aug 24 tho, not sure i can last that long!

[snorkle272 in reply to grenise]

grenise I know how hard all this is on you. And I am so sorry for what you are experiencing. Most people I worked with thought that I was dying because after losing 80 lbs. even I was looking cadaverous. At that time I was severely overweight. I am not a Dr. but If you tested positive for lupus anti coagulant antibodies, it could be that an artery is blocked, or mostly blocked. LAC causes proteins to be surrounded by fats and block arteries. That was why I had the strokes, the intestinal ischemia, and the blockages in arteries of my legs. In my case these blockages had been building for decades. It was only because of the strokes that I learned I had Hughes syndrome. (In Canada the illness is called Antiphospholipid Syndrome. Or APAS.) A billion colonoscopies, Gastroscopes and even endoscopes were no help for me. You said you couldn't tolerate the protein drinks. I don't know where you live, but here in Canada, we have protein drinks that are clear fluids. Nothing milk based. Gatorade and Gastrolite are the 2 most common that I can think of. The one protein drink I could tolerate was from the drug store. It was called Gastrolite and was a clear fluid. There is a version of it for children called Pedialite. It had the nutrients my body needed, and I even managed to gain a few pounds back when I started drinking that. It didn't cause any pain or diarrhea. I could use it to make jello, so I could have the illusion of eating! I went for 25 years with not being able to eat broccoli, (which I love!) to being able to eat and properly digest it after my stent was put in. And brussell sprouts! So there is hope. I know it is really tough to hang in there, but I know you can. Just the fact that you are able to live so long on such a restricted diet for means you are strong. A fighter. I hope you have a Hughes specialist! Or that you find one very soon. And I will keep responding to you.

[grenise in reply to snorkle272]

thank you- i have never had a stroke thank god. you had blocked arteries and never knew? what test would show blockages in legs? i tested pos for lupus anticoagulants, yes and cardiolipin igm and something else, i dont recall. i had genetic testing done and nothing was found but i DID learn that i have a very rare mutation which basically blocks heart disease. one dr has suggested that is keeping me afloat. crazy but honestly lately my legs get so cold and pins/needles in calves down to toes. dr at HSS in nyc on thurs hopefully sheds light on this!! and at 5’5” 94 lbs i better be strong cuz i’m about ready for that miracle😘

[snorkle272 in reply to grenise]

Yes I had blocked arteries and didn't know it. But I also didn't know that I had 3 full strokes. I was seeing my doctor about my stomach problems, and leg problems. I mentioned that I was now having some vision problems as well. So my dr. referred me to an opthamologist. It took time to get in of course, but when I finally saw him he examined me and told me I either had a brain tumour or brain cancer. More to follow)

[grenise in reply to snorkle272]

oh i think ur reply got cut off you are shedding so much light- another member told me to read hughes’ june blog- it sounds like me in a nutshell. my eyes are soooo bad- but no one is catching anything i am feeling scared but looking forward to answers.

[snorkle272 in reply to snorkle272]

I had an MRI done 4 days later! (around here it usually takes 3 months to get an appointment.) The MRI showed no tumour or cancer. But it did show that I had had 3 full strokes. What was happening with my eyes was dozens of mini strokes. And one of the strokes was 13 years previous to the next two. My first was at the age of 35 and the next two at age 48. My doctor saw me as soon as he got the results and things progressed from there. (more to follow)

[grenise in reply to snorkle272]

im 45 and i have dealt with these symptoms since forevdr! my mri’s until now showed lesions for MS- but i havent had an mri in 4 yrs. i asked my neuro if he thought i could have tia’s and he said i dont think so. but i do think so! drf going to request a new mri- did u have to use contrast, maybe u remember? im very grateful for your sharing this so late at night!! you should go to bed !!!

[snorkle272 in reply to grenise]

What was supposed to be a 4 hour surgery turned into 10 hours. And they didn't tell my husband anything. Yes I think the MRI was with contrast't. The test I had with the vascular specialist wasn't an MRI. LOL yes I should be in bed. Some of the stroke related issues are happening while I type. The strokes left me with word spaghetti, aphasia, balance issues, and bladder issues. Theses problems are worse when I am tired. I didn't know I had strokes because they weren't any typical symptoms. But it was only because I had the strokes that I learned I had Hughes syndrome.

[grenise in reply to snorkle272]

oh im gonna ask more but u can answer tomorrow!! what were ur stroke symptoms? i always have my husband look for the FAST stroke signs but i am never having them, thank goodness, but i worry

[snorkle272 in reply to snorkle272]

(My computer is acting up which is why I am posting in parts.) My doctor immediately sent me to the neurologist. She said "oh they are just strokes" and gave me a prescription. I was back in my doctors office 20 minutes later. From there we found a vascular specialist was available - with a three month wait. God I was so scared. He did a test with dye that showed my right carotid artery was 90% blocked and the left was 30% blocked. Another three month wait and then I had sugurey to unblock it. (MTF)

[grenise in reply to snorkle272]

im due to get an echocardiagram in about two weeks- they have all been clear do far, thankfully! my bp is good but i often feel faint and very lightheaded/dizzy

[snorkle272 in reply to grenise]

Yup that another positive symptom of Hughes. It's good that you are having an ekg done for your heart. I had one done after a heart attack due to e coli shutting down my kidneys. (I didn't know I had a heart attack at that time.) Another atypical issue. But the great news was that my heart is in perfect shape with no blockages at all. (They used dye with the ekg). I'm sorry I have to go to bed now but will talk to you tomorrow.

[grenise in reply to snorkle272]

sweet dreams, peace

[snorkle272 in reply to grenise]

When I had the strokes, I had none of the typical symptoms. In two cases I fell to the ground. In the third case I kept asking my daughter the same question because of confusion. I kept asking "what were the neighbours' kids names? "

On a positive note grenise, I am now 61. And I haven't had another stroke since being diagnosed with Hughes 12 years ago. Surgery and warafarin have been taking care of the clogging artery issues. Even the left carotid artery shows no blockages anymore.

Some of the other issues I am dealing with aren't related to having Hughes. For example when I was falling constantly, it was due to having broken my tail bone smushing the vertebrae, and cutting off blood circulation. It was easily resolved, and sure relieved me to know that I wasn't going lose the ability to walk.

[grenise in reply to snorkle272]

i get worried cuz lately when i wake from a nap i find myself feeling sorta paralyzed- only lasts for probly a short time but i find it hard to talk. then it clears up-

but my husband says he can see it but i recover very quickly.

the GI at NYU ystrdy says he is looking at vasculitis for me and why i get so dizzy and lightheaded when i eat. it is very scary

[snorkle272 in reply to grenise]

I never woke up feeling paralyzed. Dizzy and faint yes. But I have low blood pressure. So I just need to sit at the side of the bed for a few seconds before moving, or I end fainting. Sometimes I do experience the dizzy and faint feelings for a full day. It happens often when I am over tired. So I take that into account when we are visiting relatives out of town. I make sure that I schedule appointments or meetings after a few days of rest. I have modified my life style to fit my needs, and I am a much happier person because of that.

But I still manage to take wonderful vacations! I love to go on cruises in the Caribbean! And because I have hearing loss and balance issues, rough seas don't bother me! Who'd have thought it . There are always ongoing issues, but I have learned to live with some limitations. (I am still sort of annoyed that I can't go zip lining because of my illnesses, but heh that's life. And it is just a small thing.) And I can still snorkel! So hang in there. You do have a positive future to look forward to.

[Wittycjt in reply to grenise]

I think this is what Hidden was speaking of above, good results are hoped for, may you at least get some answers🙏🏻

[Wittycjt in reply to Wittycjt]

This was suppose to post under your “sensor” swallowing post, my IPAD is not co operating I hope you understood

[grenise in reply to Wittycjt]

oh yes completely understand!! no worries at all

[HollyHeski Administrator]

I have bile acid malabsoption and my pancreas is not creating enzymes to help digestion, which is from having my gallbladder out. I don't absorb any vitamins, proteins or fats.

Since being put on Creon tablets, I no longer have any symptoms.

[Wittycjt in reply to HollyHeski]

Are Creon tabs very expensive Holly?

[HollyHeski Administrator in reply to Wittycjt]

Hi, I have them prescribed by my GP, so within my NHS annual prescription charge.

[grenise]

yes my gallbladder was removed - they said it was insufficient and that i would be better. regret that

i took bile salts but they werent helpful but i have heard of creon and will look into it- thank you!