Does anyone know anything about the link between auto-immune issues and digestive/gut issues, specifically constipation?
I have a strong family history of auto-immune diseases including Lupus, hypo- and hyperthyroidism, Ehlers-Danlos syndromes and sjögren's syndrome.
I would like to be tested for auto-immune diseases, given the fact that my mum and siblings all have auto-immune diseases.
I've never heard of a link but I'd guess it might be possible as there isn't really an understanding of why people developed ibs. Why not have a look online to see if there are any medical trials looking at links between autoimmune disease and ibs? There might even be one close enough to you that you could get involved.
Good question & a tough one…I’ve spent the past 11 years getting the NHS to concentrate harder on figuring my version of inflammatory early onset mouth to exit progressive debilitation. This 2015 Mayo Clinic info is possibly among the best on the AID GI situation:
mayoclinic.org/medical-prof...
And this EDS U.K. info is great on that GI angle:
ehlers-danlos.org/what-is-e...
❤️🍀❤️🍀 Coco
PS i’m 68 & Gastroenterology is one of my 3 lead clinics (those keeping me alive, basically - am with the other 2 due to my immune dysfunction & connective tissue disorders: immunology & rheumatology…+ of course lots of other clinics for the usual multisystem probs).
after decades of lots of secondary & tertiary care gastro investigations diagnosing sections of my mouth to exit with various specific conditions, my small intestine is now in one of the rarest types of organ failure: Chronic Intestinal Failure (CIF), which means I cannot digest or tolerate food & food residue so I am in my 4th year without food surviving & thriving with much less discomfort/pain etc on prescrption predigested amino acids (Elemental Nutrition) ….& my hypermobile Ehlers Danlos large intestine has become so debilitated that it.’s condition is described as Chronic Intestinal Pseudo Obstruction (CIPO), which I manage via prescription weekly bowel cleanses + suppositories as needed + my gastro now wants me to try prucalopride &m if that is no good, linaclotide.
Furthermore, rheumatology & immunology & Gastroenterology all admit my immune dysfunction & connective tissue disorders probably do have important causative roles in all my very early onset, progressively debilitating mouth to exit chronic GI conditions… whatever, our goal is to manage all this well enough to postpone needing the tubes, TPN & stomas that patients like me tend to end up with….a very high proportion of which tend to be hEDS patients
I suspect that quite a few folks diagnosed with IBS are actually living with a degree of my sort of issues. But I’m no expert. What I do know, is that the scientific community considers CIF & CIPO rare, which means they don’t understand these conditions well enough to spot signs & symptoms early & identify patients most likely to segue into the severity I’ve got into. Instead, I reckon science just diagnoses each part of the GI tract with its own specific prob inc slapping the IBS label on anything non-acute that’s abdominal…& hoping for the best via basic IBS treatment regimes while counting on research to get enough funding to figure out the many faces of IBS so more suffers including AID & CTD patients get better, more targeted care
I hope you get the help you need…am glad you’re here cause there are lots of us seeking AID & CTD diagnosis + managing GI probs & am sure you’ll get great replies + support
Thank you so much for your reply! I'm so sorry to hear all you're going through! I completely understand, I've been labelled with IBS without having any further tests despite all my family medical history. It's extremely frustrating and feels like no one is listening to you. Certain people just see IBS and think we're all just making a fuss over nothing and do not see the pain and discomfort we go through everyday, let alone the impact it all has on our mental wellbeing, jobs, relationships, families, etc. I hope you're able to get more specialised help and soon! Xx
Thanks health: Well Said! Many here will be TOTALLY relating to your comments
The Good News is: my mouth to exit GI tract IS now Really Truly Madly Deeply getting the specialised help I need. And yes, I’ve had to be very determined & persistent to get this specialised help… my feeling is that i would not have managed to get this specialised help without the info sharing & support here + on the HealthUnlocked Lupus U.K. forum (might be helpful if you join that community). The GI treatments I’ve described above are the best available today for someone in my condition, I’m in care at a respected international University Hospital with some of the best clinicians around & I’m doing really well on all my treatments + am avoiding tubes, TPN + stomas. So, 🤗 things are about as good as they can get for a person my age with my sort of infant onset CTD/AID/PID conditions.
Wishing you all the best… hope you’ll keep us posted 💞💞💞💞💞
Hi health2712, I'm not sure if there's a link but your description sounds familiar to my case. My initial health issue was Arthritis. I then developed IBS and there's an assumption that I have Diverticulitis. Then last week I was referred to see a Rheumatologist to check if I have Sjogrens Syndrome. Apparently I may have Fibromyalgia too. I'm wondering if it's years of painkillers 🤔 The worst for me was Cocodamol which suppressed and gave more symptoms. Boy oh boy did I know about pain about 30 days after being weaned off it. My new Gp was disgusted that another Gp gave someone with IBS this medication, as it ruins your bowels, which 7 years of taking large daily doses did to mine. I'm also wondering if I have Ehlers-Danlos syndrome too as I have had Hypermobility Syndrome for around 35 years.
It's very interesting that you mention Lupus as that is what my Gp from years ago thought I had. This runs in my family but with 2nd and 3rd cousins and was discounted by the hospital.
It was only last year that my IBS symptoms changed from constant constipation mainly the constant diarrhea as I virtually became a vegetarian. After decades I realised I wasn't paying enough attention to my bowels and relied on my GP too much, so began eliminating things from my diet and keeping a log of it. I researched the ingredients and found I had a wheat, rye, maize, wholemeal etc intolerance mainly, which were the cause of my pain. When I researched further it looked like I had Coeliac Disease and I had an issue with gluten. I switched my diet to gluten-free and feel so much better for it. My body couldn't process the gluten which resulted in constipation and pain
Thank you for sharing! That's really interesting and very helpful! I'm actually due to have a Coeliac blood test next week (after requesting one from my gp). It'll be interesting to know if I am intolerant to gluten. I'm glad to hear things improved for you on a gluten free diet. What other intolerances do you have? What else did you remove from your diet? I ask because I'm trying to identify possible food intolerances that could be contributing to my symptoms.
I had the blood test for Coeliac 2 days ago. Apparently you're supposed to stay on the 'normal diet' with gluten for 6 weeks. I just couldn't do that due to the pain so had it without gluten. Other intolerances I have are to fruit and vegetables with high levels of Sulphur. My worst ones are Conference Pears and Cabbage. That pain is worse than childbirth. Next is Sulphur Dioxide I think it's called which is used to preserve some dry fruits. I developed pains on the left of my tummy button which went down my tummy. I just couldn't even talk as the pain took my breath away. All these things were masked by Cocodamol and came on after quitting the blasted thing. This is when the NHS Pain Clinic said I had Diverticulitis, but they're not medical staff. My new Gp wants to deal with the prospect of Sjogrens Syndrome first 😩
Thank you for your reply! Good luck with everything, I hope you're able to get the right diagnosis and get the help you need! Xx
Thanks to you too. You've given me something to think about. Hope you get the help you need too All the best. 😍 Xx
From various books I have read, there definitely is a connection. But it is not simple and has not been really clarified. I have celiac, which is auto-immune and causes many digestive issues due to ingesting gluten. I also have microscopic colitis, which is only just becoming popular as a diagnosis, and it is being suggested that that is also an autoimmune disease. It also causes horrible digestive problems with other issues like malnutrition and anemia etc etc etc. I also have Sjogren's syndrome, and sarcoidosis. It has been noted that if you have one auto-immune disease, you often get others. That was true for me. Each disease is different though, and to get tested, it involves a variety of tests, so you have to do it one problem at a time. And not every test is conclusive.
One thing I should say is that I have celiac but nobody in my family has it. No one in my large family of eight siblings has any autoimmune disease but me. I am 76 and I did not have any hint of any autoimmune disease until the last ten years. There are some genetic markers involved for celiac, but 30% of those who have the markers, don't get the disease. It has to get triggered. They say that one thing that can cause a change in your genes is long term stress. That definitely was a possible cause for me. Also various viral and bacterial infections can cause the onset.
If I were you, I would just eat a very healthy diet, exercise, watch you weight, try to limit your stress, get enough sleep, and stay away from unhealthy people, and just wait and see. Constipation can be caused by many things other than auto-immune diseases. Have you tried magnesium citrate? Good luck.
Thank you for your reply! That's all very interesting. It is very hard to get doctors to listen to you, let alone to actually get tested for any auto-immune conditions. How did you get tested? I've just started taking magnesium supplements (about 5 days ago) but unfortunately so far I'm not seeing any improvements with my digestive issues.
Well, I had chronic diarrhea for years and finally my GP did a blood test and the blood test showed that the antibodies for gluten were present so that is the first test. Then I went to a gastroenterologist and he did a colonoscopy and endoscopy. They take samples of the upper small intestine where it meets the stomach. That is supposedly the definitive test for celiac. If the tiny little finger- like projections called villi are flattened out, that means celiac is present. And then he had me get a genetic test and I had one of two genes for celiac. (But as I said, so do lots of people who don't have active celiac.) So that is how you find out about celiac. For Sjogren's they also do a blood test, but 20-30 % of people who have it do not have the evidence of antibodies in the blood test. I did not have the antibodies for it, but I definitely have it. Lack of tears, saliva, even no ear wax, sore throat, etc. I just lately had another colonoscopy/endoscopy and she took samples from the colon, and that showed microscopic colitis, which some doctors believe is auto-imune. So basically a colonoscopy/endoscopy can tell you a lot.
I have several friends who have been totally messed up by going to different doctors who say they have lupus, no they don't have lupus, yes they do have lupus. The diagnosis for that one seems to be unclear. Same with other autoimmune diseases. Yes you have Crohns, no you don't, yes you do. So if you got tested for those, I don't think you could be sure the diagnosis would be accurate. Not sure what the test is.
Doctors use magnesium citrate as part of colonoscopy preps. To clean you out. They sell it in liquid form. It is a vitamin.
Do you eat a lot of good fiber like salads and fruit and veggies. And drink a lot of water? Hope you feel better soon.
Thanks for your reply! That's all really helpful, thank you 
Yee, unfortunately, I've heard that a lot - people being falsely diagnosed or told they don't have a condition when they actually do! It definitely sounds like you do have Sjogren's. My sister was diagnosed with Sjogren's a few years ago, but is also really struggling to get proper treatment and help. I didn't know magnesium citrate was used for bowel prep, I'll look into it and see if it'll help at all.
The more I've spoken to people and researched, I'm certain my digestive issues are functional. It's just now finding a doctor who understands and is able to help me find the right treatment. Unfortunately, it's going to be a long process of trial and error, which seems to be the case for almost everyone I've spoken to with these issues.
Yes, I've made so many improvements to my diet and lifestyle over the last two years, but unfortunately my condition has only worsened, leading me to think it's not strictly related food intolerance.
Anyway, I wish you all the best with your health and thank you for all your help Xx
Good luck to you!
Hi health2712I think there is a connection between autoimmune conditions and digestive issues. When you think that food/nutrition is absorbed through the stomach walls into the bloodstream and so throughout the body.
This is where leaky gut (intestinal permeability) will affect what is 'let through' or 'kept out' and so cause problems.
If the stomach villi are not able, due to damage, to work properly then the result will be poor health.
The villi may be able to mend to a certain extent but you need the expert guidance of a health professional such as a nutritional therapist.
BANT in UK will help find a suitable NT to help or ION is another place to find one.
The NHS generally don't recognize this condition and unfortunately like to compartmentalise each condition.
The human body is dynamic and ever changing, we don't stand still and for everything that happens to us, whether externally or internally, there will be an effect.
And yes one autoimmune condition will often lead to another.
Yes long term stress or shock can lead to autoimmune conditions and as we are all different then we have different 'weak points' or maybe vulnerable ( this is where DNA comes in) that may become affected.
The thyroid and cerebellum can be a target.
Gosh I have gone on here but we need to be proactive and focus on how to try and improve our health, and this might mean not relying on the NHS for all the answers, because they don't always have them!!!
Best wishes.
Thanks for your reply! This is all really interesting, thanks for sharing! I completely agree that (unfortunately) we need to find help elsewhere. I'm currently looking for a good gastro-nutritionist, so if you know of one please do let me know! All the best Xx
Even if they say you are not Coeliac you could give a strict gluten free diet a try as there is something called "non coeliac gluten sensitivity" which has no bio markers. Don't just fill up on the ultraprocessed food from the free from section though! Good luck.
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