Conversations With Professionals: Gastrointestinal Issues in EDS and HSD.

[@BakingDIY5588]

I was diagnosed with Mals and EDS. I had the corrective surgery. I am 4 months out and I can not tell you how painful it was every single day. I dont think that it is focused on enough. I feel so blessed to have my team.

[@Liutgard]

This is all very illuminating. I have an extra wrinkle though, as I have Chronic Kidney Disease, and my diet restrictions with CKD are often in opposition to a lot of other theraputic diets. I really wish I could get my doctors to work together more often.

[@realness_rarity]

Prof aziz is a gift, he’s my consultant he’s lovely so caring and wise. He’s given me the support I needed where the local gastros where I live we’re ignoring my inflammatory bowel and other things now they acknowledge and he’s also helping me with my gastroparesis

[@420luvsounds]

Where are is he located? I need a consultation with him like yesterday! If you please.

[@beckysweeps9748]

My 6 year old grandson was diagnosed with EDS about 4 years ago. He had to be put on a feeding tube about 2 years ago because he would just not eat. He still eats very little by mouth. He has issues with textures of food and just doesn't have a desire to eat or drink. We are hoping and praying that as he gets older that will change. Thank you for this video. it was very, very helpful.

[@fab4wild]

I know 2 little dudes with 2 different genetic conditions. One started eating without being in pain when he was nearly 10. The other one was feed tube since birth and then her mother took him to an organisation who help kids to swallow, to accept food in the mouth, to train the brain to want food, etc. He is now 5 and eat by mouth. This is totally different to your grandson condition. But this is hope✨ And the fact that your grandson is eating by mouth even a tiny little bit is very good to help the brain not give up on eating and swallowing! Good job💪! Oral sensoriel issues are not known everywhere, so is EDS! I hope you will find specialists that know those 2 conditions to help this little warrior and your entire family🙏🤞 ☺️

[@thistooiseds3215]

I’m so sorry for his journey being so riddled with pain and suffering!

[@beckysweeps9748]

@@thistooiseds3215 thank you.

[@Fletchpets23]

Big hugs too him xx it’s hard when you don’t feel like eating x hope you find your way to getting him eating and drinking

[@lovenatcat-inthestars6709]

This was so helpful, thank you. I have hEDS and have my first Gastroenterology appointment at UCLH in September, and this video made me more informed and clearer about both the possible problems and the tests that may be done.

[@arjun63]

Stumbled across this by grace - amazing really amazing - I can help my daughter better now

[@megperry5586]

I am a nutritionist as well, and though it is very difficult to accept, but a wide variety of foods for people who have immune reactive syndromes is sometimes not helpful. Many cultures use a few key foods that provide them with all they need, ie..corn and beans with simple meat, Or potatoes, cabbage and some simple meat. I have 2 children with EDS and though as a nutritionist and American we want to eat from the great variety of foods, but keeping it simple works. Also probiotics and digestive enzymes are a necessity along with a nutritional supplement.

[@teppi5119]

19:43. If Helen ever sees this: thank you for this segment. My dad was military and ate fast, I tried to race him. In pursuit of an hEDS diagnosis. This segment spoke to me directly. Thank you so much.

[@spriggsnutrition]

I know it was some time ago you left this comment but I've very glad you found some resonance in this discussion. Best wishes.

[@teppi5119]

@@spriggsnutrition thank you so much!! Because of this segment I got a nutritionist and was honest about how I was eating. Together we have found food I can tolerate and have worked on my mental game (slow down and focus). I have gone from barely eating to having snacks all day. Your words have provided an AWESOME ripple. Thank you for being. 🫶

[@spriggsnutrition]

@@teppi5119 I'm really pleased to hear you're making great progress - keep up the great work!

[@cemetarymama]

I don’t know if it will help anyone else but what has helped me be able to digest better is papaya enzymes. You chew them before every meal. I was unable to eat vegetables and anything high fiber for a year and a half before trying it. I hope it helps someone in these comments.

[@sherryobar5750]

Thank you!

[@melissafarrugia9531]

Gosh yes, why does taking natural digestive enzymes help my pain in my knees?

[@myew]

Thank you, these videos are appreciated.

[@kaylesandbean]

Thankyou so much for doing this. It's been super informative and I think I meet all IG symptoms but also I think my daughter has EDS, she was diagnosed with hypermobility 4 years ago (aged 8), IBS (3 years ago) and she's recently been diagnosed with POTS now too. Xx

[@victoriapendragon8376]

My daughter went undiagnosed for years, despite the really obvious hypermobility. Now in her 40's and only recently - finally! - dignosed, she says that she regrets having sort of "showed off" her hypermobility as a kid because there's a lot of issues now - pain among them - with her joints. But we had known nothing because of her having not been diagnosed.

[@kikih5152]

I was diagnosed with Heds in 2015 along with fibromyalgia. I’m 6’. Here in wales I’m ignored by drs. Too expensive anything wrong with me is just put under my Eds diagnosis. I’m intolerant to all corn preservatives and dairy so can’t take any medication and no one will help to get compounded medication. My only pain relief is cannabis and I suffer with awful gi issues. They won’t refer me anywhere for pots mcas Sjögren’s syndrome hand cramps nothing it took two years to get a referral to a rheumatologist for my fibromyalgia. But you need to look into the connection between food intolerances primarily corn/dairy and the effect on Eds GI pots mcas etc I’m sure there’s a connection.

[@ElaineW1963]

I'm in Wales too and suffering the same problems. I've no answers but sending hugs xx

[@sarahb.6475]

Hello Kiki H. I have problems with corn & all corn derivatives too plus dairy.. My corn problem is linked to the fact I have one of the genes linked to celiac. And I do actually get celiac symptoms if I eat something that has hidden corn in it & then Iose weight. I know most doctors say that gluten is only wheat, rye and barley but Dr Peter Osborne says that ALL grains include gluten including corn. I also react to airborne corn too, like if other people are cooking it. Plus stuff like perfume on others, air freshener, etc. It could be you have the gene too. And Dr Osborne does say that if you have the gene you do react worse to corn than wheat. I actually do react to all grains. Maybe this might help? 23 and me does test for some but not all of the celiac genes. You can find Dr Osborne here on youtube. One thing I find helpful with slow movement of food in the bowel or stomach is to make sure I get more potassium. With the limited diet I am stuck on is that I realized I don't have enough potassium in my diet so I try to eat things I tolerate that contain potassium like prunes. Or watermelon. Use google. I am mostly eating meat now as my main calories. Grass fed beef. I eat 1.5 pounds a day plus a few produce items I tolerate. I've also added wild caught fish like salmon & catfish & mackerel to my diet. Fatty fish. I am basically doing keto, almost carnivore. I react to the meat trays & those pads under the meat so I only buy meat wrapped in paper from my local Whole Foods. I react to oxalates so I avoid most veggies & fruits. Check out these youtube doctors: Dr Berg, Dr Saladino. And don't forget some fruit is picked green and then gassed with a corn based gas (like bananas!) My gas and bloating has improved a lot. And listen to what Dr Saladino says about "healthy fruits & veggies". Hope this might help?

[@420luvsounds]

I also was diagnosed with hEDS in 15, am 6'2", have fibromyalgia, hypothyroidism, prolapse, etc., and even got an osteopath for my primary care Dr. But still I'm ignored as to diet questions, they want to scope me but seemed suprised when I ask about it being more dangerous with hEDS. Then have no follow up ever. I find a brick wall for any therapy that is not a pill or scalpel. That being said... I have been on the Medical Medium(found his thyriod book @ local library) diet for almost a year and have found it to be super helpful combined with daily defence pre/probiotic. I have much less pain and more hunger. Seems weird but I was at my ropes end and its helping so hope it helps you or everyone that needs it!

[@sherryobar5750]

And gluten intolerance. I use Potassium tablets for muscle cramps!

[@melissafarrugia9531]

Huge virtual hugs

[@agathatwinflame]

Acetylcholine/vagus nerve/neurological issues are the root which is frustratingly seldom looked at by medical professionals due to compartmentalising EDS rather than looking at root causes

[@melissafarrugia9531]

For GI pain, I have only felt relief from slippery elm bark powder.

[@MrsXx]

I was eating so healthily but I still have never been able to eat my daily recommendation. I only managed a third at the most. It's been a life time of chronic constipation & organ fragility in infancy but it's progressed in stages & stages it's calmed down for a couple of weeks or at the most months. I also have type 1 diabetes, lactose intolerance & vit D deficiency, they are investigating gastroparesis now as my hair, cycles & strength have become damaged so much this past year. I've had to limit foods so much with bowel incontinence, kidney infections, painful bones & thin skin causing anal tears with upset stomach. I seem to be constantly thirsty drinking 4 litres aday. I just my current gastroenterologist will continue helping me after. He's said it's hard to diagnose gastroparesis with the investigations they've got available. I just want to sort my diet out enough to be able to have enough energy to stand without collasping.

[@PresUTube1]

This was excellent

[@kimleon-guerrero9980]

Thank you all so much for this insightful and informative video. I have hEDS, mild Pots and MCAS and at age 65 I have finally found that for me the ketogenic diet has been amazingly helpful in managing my gut issues, ( IBS, GERD, and Rapid gastric emptying). Years of eating a vegetarian and sometimes vegan diet did nothing to help my gut and I now believe after 18 months of eating a ketogenic diet that the excessive amount of grains and plant material I ate on a plant based diet did more harm than good. Like you said, we all have to find what works for us individually to improve our gut health and quality of life.

[@rachelguyah1511]

I am finding that grains are an issue for me as well. Not just gluten/wheat, but oat, corn, etc. Low carb, low grain diet helps my EDS-related symptoms.

[@kimleon-guerrero9980]

@@rachelguyah1511 You might want to check out the book “End Your Carb Confusion” by Dr Eric Westman and nutritionist Amy Berger. You can find it on Amazon.

[@housEofTime17]

Eating a higher fat diet supports connective tissue integrity and copper utilization. Both of those help reduce MCAS and all the gastro intestinal issues. Vagus nerve impairment investigation is hugely supportive.

[@Arcticpagan]

For me a carnivore diet help very much i have cEDS

[@MOJORAPSCALLION]

This was fabulous thank you to the wonderful panel. I too have EDS and pretty bad motility issues from mouth to tail end. My whole GI system even Gallbladder, Pancreas and urinary bladder are also effected along with my throat, oesophagus, stomach (Gastroparesis) and Bowel. I’m peg-j tube fed and SPC catheterised and also do Bowel irrigation. I have POTS which has improved with treatment and autonomic neuropathy, MCAS as well as Peripheral neuropathy and a few more co-conditions. It’s hard managing it all on a daily basis, some days my joints are dreadful, and I often am in my braces. I still try to eat & use my Bowel & bladder every few weeks since having all my tubes placed, one day it might improve never loose hope. 💚🦥💚🦓💚🦥

[@victoriamyatt1709]

In 2020, (November) i finally had my gall bladder removed after lock down eased and many trips to the A & E, throughout the year, presenting with pain, vomiting, herniated esophagus and pancreatitus. My bloods finally showed that I needed the operation as an emergency rather than elective. The GI was aware of all my myriad of symptoms and was sadly unaware of the possibility of (h)eds. He said that the surgery would get rid of the current pain but not take away the rest of the stomach pain/issues or gerds. I wish he had more of an idea as I presented with very classic symptoms. However I'm now it the process of being fully diagnosed with rheumatology and the dr has had to jump through all sorts of hoops to get me there, to which I'm very greatful. I'm not celiac but through experimenting and removing gluten and limiting carbs I have found that the gut motility has started to move without movicol/cosmocol sachets and has helped with the severe acid reflux i had. It's still not perfect but so much more manageable. I'm really greatful for these videos as word needs to be spread about the prevalence of eds within our community.

[@ElizabethNonsuch]

All these conversations annoy me so much. There are never any definitive answers to any questions - it's always 'we all respond differently', 'it's not funded on the NHS' or even worse 'there's not enough evidence' - TBH, I have EDS but try and live my life ignoring it, since there are no treatments that have been proven to help, nor are there any other answers from any health professional than 'oh, well that's just your EDS' so I've literally stopped looking for answers now. Maybe in a hundred years, the medical profession will get its act together and stop treating each symptom seperately and treat EDS as a systemic illness, then great. But in the last 20 years of my diagnosis, literally nothing's changed.

[@tonidelisa8185]

Same. I manage myself.