Food sensitivities?

[Steenygirl1]

Does anyone find certain foods make their symptoms worse? I find heavy foods like starches just sit in my stomach, I can't eat much at each meal, digestive enzymes help. And I think they make my joints ate worse if I eat some things. I miss them then eat them again and think I'm OK but seem to flare. Then other times no matter what I avoid it makes no difference to the pain. Is it just me?

[Tillyray]

Hi Steenygirl1. Oh I feel for you, it is awful.. I also have sensitivity to various foods - sometimes to all food and I cannot eat- and I suffer serious bowel problems. I have episodes of stomach cramps, diarrhoea which can last hours,as can episodes of constipation which can both leave me ill and bring on a flare of other symptoms, including chronic fatigue lasting days, weeks... I also experience the autonomic dysfunction type symptoms in these events - I am as yet unsure as to which is the instigator?..if indeed thats what is happening?- I have read that autonomic dysfunction has bowel symptoms. I am yet to be officially diagnosed, but I am in the process of it... I was told years ago that I have IBS, and since my hEDS diagnosis I've also been told 'a sluggish bowel' is part of it and could explain the constipation... Sometimes I can feel quite well in relation to my bowel, and then all of a sudden it flares-up after having eaten something that my body can't handle. This can start to affect me gradually, or very, very suddenly😕..I avoid certain foods that appear to definitely cause problems. But I find some days that even the foods I am able to eat without problem are also the enemy😟 ..For several months I have eaten a gluten free diet and although it hasn't been a total cure, I find it helps me greatly, and it has also eliminated the persistant brain fog I use to experiance! 🙂 ..So to answer your question, it isn't just you☹ ..I am informed by my specialist that it is difficult to advise on medication like Prucalopride for constipation,as I also need to take immodium for diarrhoea.. hypermobility.org/help-advi... I hope you are able to get some relief from your symptoms. Best wishes 🙂 xx

ps. I hope the link works. But you can go on the HMSA website -Hypermobility syndrome association- for help. Good luck! x

[Tillyray in reply to Tillyray]

I will be seeing a dietician soon for advice with the fodmap. aboutibs.org/low-fodmap

[Steenygirl1 in reply to Tillyray]

Thank you Tillyray, it's difficult isn't it. As if the joint stuff is not enough!! I too went gluten free but it wasn't quite enough. I think I am better lectin free. But it's not easy, I was away for a wedding recently, or being in a hotel, can't get enough food because no starch means it's difficult to fill up. Sigh! Better get back to the restricted diet!

[Tillyray in reply to Steenygirl1]

It is awful..and as if it wasn't hard enough. I hope you find something that helps. xx

[pikamonster]

Morning both,

Sorry to hear you're suffering with your tummies. I thought it might be useful to share a couple of potential EDSy causes.

As Tillyray has said, autonomic dysfunction or POTS can be triggered by heavy or large meals. Electrophysiologist needed for this one - recommend Dr Nick Gall.

There's also, as she said, sluggish bowel issues. This can be akin to gastroparesis and from my understanding is to do with the muscles of the digestive tract becoming lax too and not helping digestive or push food. Gastroenterologist needed here, or even better a neurogastroenterologist.

My POTS doc also notes a prevalence of coeliac disease in his patients so an endocrinologist would be what you want to check that.

Finally, and probably the most elusive, MCAS or mast cell activation syndrome, where you basically experience allergies to lots of things as your allergy response cells are overproduced or - in EDS typically they granulate which means they burst. It can really affect your stomach.

I personally have POTS and MCAS but not the middle two as far as I know. They have me on medication for both which has made a vast difference and I'm seeing my gastro on Thursday to potentially be prescribed a new medication to specifically target the allergy issues in the digestive tract as a result of my MCAS diagnosis.

Might be worth checking these things, especially if you have any other symptoms from their clusters. I vomited for a year non stop and that's been completely rectified by the medications I'm now on for the conditions mentioned and it also undid a false diagnosis of IBS that I'd been carrying around since before my EDS diagnosis.

Hope you feel much better soon!

[Steenygirl1 in reply to pikamonster]

Gosh you have had a hard time. I have been seeing an endocrinologist and gastrienterologist recently. Between us the registrar endo and I have come to the conclusion of hypermobility connection. The gastro found the sliding hiatus hernia. There was no evidence of coeliac's disease on endoscopy, I have a cousin who was diagnosed in her 20s when they found osteoporosis in her spine and she has very bad bunions too. I am waiting to hear from the consultant endo whether we will look at getting confirmation of eds but will go privately if get nowhere. I find that my already low blood pressure drops further if eat a sandwich! I was getting dizzy and hot weather isn't great so think Pots is a possibility. I have to wear a 24hr bp monitor from tomorrow. What's the bet it doesn't happen then? It's frustrating when you can't prove your symptoms!

[Tillyray in reply to pikamonster]

Hi there pikamonster 🙂. I hope all is good for you, and you're as well as you can be.. Thank you once again for sharing your knowledge. I am learning, but I have yet to understand and solve my bowel problems, or ease what are now relentless symptoms that seem to be autonomic dysfunction related. I have suffered the symptoms for a long time but they are now much worse and episodes last longer. I have been barely able to stand for less than ten mins in the past fortnight without overheating and sweating. Also having blurred vision, dizziness and pain in the vessels in my lower legs, which at the same time have a pale mottled colour. I have to rest immediately. The chronic fatigue from this is awful, I am struggling simply to function lately.Even sitting up is exhausting and I can still then have these symptoms. Laying down gives me the only relief, but even then symptoms can still come on... I have had the 24hr BP monitor,and today I asked for the results ahead of seeing GP. The average result was 91 0ver 62. Typically, I happened to be doing ok with these symptoms when I had the monitor on and so I dont know what will be made of it, as it is just within normal range.😕.. I am having an echo but expect it will be fine. Then 24hr heart monitor and cardiologist appointment..at some point.

My son had all these tests and his BP was 117/ 57. The cardiologist said all tests were fine and that what my son described is 'ectopic beats' and these are benign. He has been given the green light to have his surgery.. There is just one query, in the cardiologist letter it states that they 'could not see the arch clearly on the echo'. I feel I need to ask another opinion about this. It is obviously an important element or it would not have been specifically requested by our EDS specialist.. My son also has symptoms that suggest autonomic dysfunction but this was ruled out by the cardiologist.. I would welcome any advice or suggestions for any of this.

Thank you for reading. Very, very best wishes xx

[Steenygirl1 in reply to Tillyray]

All I can suggest Tillyray is that you stress your symptoms. Although the signs the doctors look at are "in range" it depends on how you feel, you are clearly struggling. Just give them back the question, "what is wrong with me and what can you do to help me." I wish you the very best x

[Tillyray in reply to Steenygirl1]

Thank you steenygirl1. My dealings with Doctors over many years has left me apprehensive now, and for very good reason. Although my recent experience withGP's has changed for the better since hEDS has been confirmed,I will always be prepared for the 'fight'. I only wish this 'journey' could be easier 😕 Thank you again for your support. Sincere best wishes xx

[pikamonster]

It's literally always the way! If you need any help working out the pathways for diagnosis I'm happy to help. I got diagnosed with EDS three times, if you can believe it. Clinical genetics, rheumatology at Stanmore and privately when I was trying to fix the remaining symptoms. It's like none of them believe it til they see it for themselves, but it does mean I have had quite the tour of the options, so happy to share. I hope you feel better soon - and you really can feel better, don't listen to doctors who claim there's nothing to be done so a diagnosis isn't worth it.

[Steenygirl1 in reply to pikamonster]

Oh thank you pikamonster! I am 54 and have been struggling for 20 years with the gut symptoms. They test can't find anything and you feel such a fraud so have been trying to cope alone. My joints were a problem as a child, settled down a bit but have been awful since perimenopause so I think the lack of oestrogen is having an affect. The bp dropped then too and feeling quite dizzy today. I will contact you all again if more questions come up

[Tillyray in reply to pikamonster]

Hi pikamonster and steenygirl1.

.I hope you're both as ok as can be 🙂..I have since seen my GP who has said my 24hr BP was very low at times. He concluded my average was also low, and along with my symptoms he agreed needs investigating. So he understood which is great 🙂 I am continuing to have the recommended tests.. I still need to ask a second opinion for my son. Thank you again, and any advice is always welcome. Sincere best wishes xxx

[Steenygirl1 in reply to Tillyray]

Hello Tillyray, it is good to hear that you are getting somewhere with your GP. I hope you get some answers and help with your symptoms. I too am anxious to get answers so that my son will get help earlier. I saw a physio the other day who agrees I have hypermobility and together with my diagnosis of a sliding hiatus hernia will go back to GP and ask for a referral to Dr Hakim. I think the investment will be worth his advice. The physio has also said she will discuss with her manager about a referral to NHS rheumatologist, which of course will take longer but at least I may be in the system. Maybe this is the year we will get somewhere Tillyray? Good luck x

[Tillyray in reply to Steenygirl1]

Thank you for replying. I just wanted to let you know that you will be so pleased that you saw Dr Hakim. Aside from his vast knowledge in EDS, Hypermobility syndromes, he is a very kind man 🙂..My son and I both received a diagnostic letter from Dr Hakim explaining our hEDS diagnosis and symptoms, also other body systems that need referrals'. We have since found Doctors have an improved attitude and show compassion. I am referring to Dr Hakims recommendations in the letters to GP/ Doctors as we go along (currently dealing with autonomic dysfunction) in order to be referred for the malfunctioning body parts/ systems and get the treatment interventions.It is all working well 🙂.Good luck and best wishes xx

[izzyv]

Hi Pikamonster

Your reply to Steenygirl1 was really helpful and interesting. Please can you let me know who diagnosed your MCAS as I believe my hypermobile 21 year old son has MCAS but don't know who to go to for a diagnosis. I am happy to pay for a private consultation so don't necessarily need to go via NHS.

Thank you

Izzyv

[pikamonster in reply to izzyv]

Hi there,

There is a private consultant who specialises in it but he was on sabbatical when I was referred - Dr Seneviratne (that spelling might be slightly off but should be close). I was referred by my cardiologist on the NHS to Dr Grattan who is a dermatologist and Dr Ibrahim who is an immunologist (Guy's and King's hospitals respectively).

I only saw Dr Grattan who identified a mast cell disorder but was reluctant to diagnose mast cell syndrome as he was concerned with the cutaneous, skin, version and it looked like I had systemic. He put me on treatment anyway to see if it would work and all the symptoms were controlled really well, so when I went back a year later they clinically diagnosed it.

I then had a liver scan as I'd been diagnosed with Non Alcoholic Steatohepatitis, which had seemed unrelated, but it went from being stage 2 before the MCAS treatment to being in full remission a year on, completely recovered to a healthy liver, so my gastroenterologist who had spoken to Dr Aziz, who specialises in neurogastroenterology particularly around EDS, said there was growing evidence mast cells, EDS and POTS were grouping up in some patients and causing quite a lot of problems and that I was an example of the MCAS treatment having substantial impact on the whole system.

Apparently some patients don't respond immediately to the first treatment but I was very fortunate and it's a super simple one for me - cetirizine hydrochloride, which is over the counter, I just take it at a prescribed higher dose every day. They've also now prescribed sodium cromoglicate which apparently is very effective in MCAS patients with gastrointestinal problems so that is expected to help substantially too.

As I said before, if you need any further help let me know. I wish you the very best with your son. I've come a really long way in a few years and I want all of the EDS community to have that same experience. We really need a proper pathway of care and an established referral route on diagnosis, along with specialist nurses, so that it isn't such a word of mouth potluck!

[Steenygirl1]

Hello Pikamonster, thank you so much for all the information. It certainly gets me wandering. As a child and young adult I had allergies to grass pollen, cats and dogs etc. I was also able to write nicely on my skin and produce lovely wheals! I received homeopathic treatment and now don't react to those things. I started struggling with difficulty with digestion for the past 20 years. I find that heavy foods like potatoes, beans, rice and wheat just sit there and cause bloating, and nausea, I think lectins are the culprit, and I have recently been diagnosed with a hiatus hernia. I started to suffer from urticaria when I eat the prawns over the last 7 years. I have had 4 episodes of biliary colic in my 30s but ultrasounds and hida scan shows no problem with my gall bladder but I too have wondered about a fatty liver as I have pain under my right ribs. I do think our gut is our greatest protection and am aiming to support it in whatever way I can. Good luck with your journey to better health.

[Lin53]

I also found that certain foods seemed to just sit in my stomach, going nowhere! I often had to sleep propped up in bed because I had gastric reflux when lying down, also frequent nausea but no vomiting. I had chronic constipation since I can't remember when. I have been to my GP many times and been given indigestion medicine which didn't seem to do much good. Finally, just after Christmas, I was at the end of my tether and was referred to a private hospital (under the NHS). I had an endoscopy which showed no ulcer and no coeliac disease. I then had an MRI scan on my abdomen, which showed I had a huge large intestine, so large that it was pressing on my stomach, hence the 'full' feeling - my food really wasn't going anywhere. The wonderful consultant that I saw put me on the FODMAP diet and prescribed Movecol daily. Wow! I feel a million times better. I am now on a gluten free diet because although I am not coeliac it appears I may be gluten sensitive. And the huge colon? Probably due to my joint mobility condition!

[Steenygirl1]

Wow, it's amazing what can be found when they truly search instead of just fobbing you off, there's always a reason. I think the gluten and starches generally just ferment if you have poor gut motility which goes with hypermobility and eds. Hope you are more comfortable now x