Hi, I'm currently researching coeliac disease, trying to find a connection between my B12 deficiency and why it might have occurred. As I have had fifteen years (actually much longer, if not so severe) gastric problems, coeliac disease seemed a good place to start.
Originally I thought that CD was not a good match because I was not losing weight (quite the contrary; I've struggled with weight all my life) and never had diarrhoea. Now I've discovered that weight loss is one of the 'myths' of celiac disease, and according to the Coeliac UK site most people are normal or overweight when diagnosed. However, it does seem to be the norm that people will have runny tummies with the condition, NOT constipation, my affliction. I know that around 10%, I think, present with constipation but I've yet to meet anyone. So how common is it? Are there any diagnosed coeliacs who presented with constipation? It really makes me doubt my own likelihood to have the condition, despite the fact that I do have a lot of the markers.
So, anyone out there who was a constipated coeliac... ?!
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Hi Decodream, I have long suspected gluten (or wheat specifically) intolerance as I always feel better without it, but I am (hopefully) about to be retested for coeliac so I don't want to do without right now. However, if the CD tests come up negative again I am going to go on a proper elimination diet and hopefully find the culprit.
I had low iron and b12 most of my life. I've never had stomach problems. Started feeling crappy and having headaches... Went to ENT.
They said your gluten intolerant...
ME......I have always suffered with constipation even when I was a child.
I had not been for 10 days and was in agony they gave me some medication didn't do much so went back and that was the reason they first sent me to have blood test for Coeliac that came back as yes, went to see specialist he told me that as I was over weight and constipated I was unlikely to have CD...sent me for biopsy and yes a confirmed coeliac and have been for 5 years and still constipated to this day! I eat lots of fruit and veg, tried every medication I can yet still suffer.
Have you looked at soluble and insoluble fibre in the fruit and veg you eat? I found that I had to get the balance right between the two, to lessen the times I get constipation. The IBS sites also have some useful information.
Me too, Venus. At least since I hit puberty. The slightest thing would constipate me. I used to get a very 'spastic' gut, particularly around period times and it would last for as long as a fortnight. Ironically, when I stepped up my wholewheat content it helped, but it's still a real problem. Maybe the wholewheat helps because it's my body having a diarrhoea reaction to gluten! But very, very interesting to see you were one of the rare 10% of coeliacs who have that problem. Reassuring too.
Sounds so much like me. As a teenager I was being sent to see gynaecologist saying it was to do with my periods as I was in so much pain, I was told that it could also be grumbling appendix.
I was told to eat plenty of whole wheat for fibre been told so many different things over the years. Then everything seemed to hit at once the CKD,CD,hypertension, impaired glucose intolerant, thyroid also classed as borderline amongst other things.
Told my whole system is sluggish that's why im always constipated...forever going to and fro to doctors because of constant pain all over, was told in Nov that it's fibro as well, sometimes wonder if that is a cop out so they don't have to look further.
You definitely seem to have the autoimmune cluster, don't you? I always think they seem to move like a wolf pack, all crowding in together. I was brought up by a competitive mother and I'm afraid she just treated my heavy periods and severe period pain as a way of scoring on one-upmanship. Subsequently I never complained about it. Never went to a doctors. Even when I finally hit menopause I bled like a stuck pig, not to put too fine a point on it (sorry!). I sometimes wonder now if all that suffering was unnecessary and was really a warning sign of something amiss.
Hi there. I have not been diagnosed as coeliac but have really bad reaction to gluten and weight gain with constipation. An Endo told me that I had all the signs of coeliac even though the tests were negative, I didn't absorb vitamins and nutrients and was severely malnourished, but over weight and constipated.
Hi ib003, that's really interesting. Has anyone ever said why you have such malabsorption problems if it isn't coeliac? Do you have some other intestinal problem, or an autoimmune disease?
Hi Yes I am hypothyroid and if you look on the Thyroid forum on HU you will see there are a lot of us with gluten problems too. I have never been given an explanation but suspect that I have always had gluten intolerance as I can remember my throat swelling as a child if I drank barley water. Have always struggled with bread too. I suspect that gluten affects more than just the gut and biopsy and blood tests don't pick this up. I seem to also have borderline other autoimmune issues, so there must be some connection between them. Cutting down on carbs and upping the green veg seems to help my constipation, so it might be worth a try.
Hi again, ib003, that's really interesting to know that some thyroid patients also have coeliac problems. There really is a big crossover between autoimmune conditions. Given that, it doesn't seem so odd to me that you might have coeliac while also having constipation from, say, poor thyroid activity. I do wonder how many poor souls are subclinical and just waiting to get more serious illnesses but they are being lost under poor base line tests. There is a definite ideology in the NHS that your ill-health is irrelevant until it has deteriorated to such a point that it is either irreversible or life-threatening. What kind of logic is that?
My doc has agreed to test me for thyroid, it's coeliac we're having trouble with. But there seems to be so much bother with the thyroid tests and getting the right ones that I don't even know what to ask for. Or if I'm allowed to have them. The labs seem to be dictating to the doctors what they can have. What kind of demented structure is that??????????
P.S Never could drink lemon barley water as a kid - always caught in my throat and made me cough like a mad thing. Hated the bloody stuff although I loved the flavour!
Hi again, so we both reacted to barley water, can't be a coincidence really can it. Look in the thyroid forum for lots of information on blood tests
The basic one is TSH, but you really need FreeT4 &T3 to establish what is happening, but it is unlikely that you will get the last two on the NHS with out a fight. You also need your antibodies checked too. I can't remember which ones due to brain fog, but details are again on the thyroid forum. Always ask for a print out of your blood test results so you can check them out with the very knowledgeable people on this site.
I wish you all the luck in the world with your battles with the NHS. As you say they don't seem interested in wellness only extreme illness and that doesn't help those of us on the cusp who are trying to help ourselves. PM me to let me know how you get on
Hi Lisa, yeah, I've joined the thyroid forum now so I can gen' up on what I need before I get the tests. But it doesn't help the anxiety when you never know if you are going to get the tests you want or even if you can trust the bloody results! And that's what we all need, more anxiety.
I shall definitely let you know - thanks for your help. X
Hi, I'm not coeliac, I'm a member of this group because I though I was for a while and had the endoscopy to test for it but was negative. However I have been constipated my whole life and I was also diagnosed with a vitamin b12 deficiency and I don't know why. It seems like b12 becomes deficient when you have pretty much any gastric problem over a long period of time. I learnt that if you have ceoliac disease then you would most likely be deficient in at least one other vitamin or mineral like iron, folate, vitD. Have you had these tested? They can do blood tests for coeliac disease easily at the GP's, they are not 100% accurate but they are pretty accurate.
Good luck, hopefully you can get further with drs than I can
Hi Carly, I've had a coeliac test before, but I think the negative result may have been untrustworthy because I have low IgA and they did the wrong test for someone with low IgA, so I'm hoping to have it retested. I haven't had other vitamin levels tested, other than B12, but I may ask to have this done after I've had coeliac and, hopefully, thyroid tested. Has no-one suggested why you may have low B12? I assume you've thought of pernicious anaemia?
Oh, tell me about it, Carly. It's the absolute bane of my life. Because I have a rare degenerative, incurable disease doctors just throw drugs at me and tell me to clear off. They actually get angry with me for wanting more than that. I do wonder if they would be quite so keen to be written off if it was them on the receiving end. I have no idea why they go into the profession if they don't have any interest in what they are doing. Yep, I'm afraid the curious doctor, a la House, is a thing of TV fiction...
Haha that end sentence made me laugh, I've been watching house all week wondering if I'll ever get a Dr who has an epiphany. I think we just need to find a Dr who cares which seems to be hard
I am intolerant of gluten (can't face eating gluten again to get tested for celiac as my intolerance reaction is unbearable). I have struggled with my weight (been just in the obese category at one point) and I suffer from severe constipation... I have to keep it in check or I get impactions as I literally wouldn't go for 3 weeks. I do also have a few diseases that could affect my bowel habits so I'm not sure what causes it.
I am severely deficient in vitamin D, low on B12, low on potassium. I think I might be deficient in zinc need to get tested.
Hi Mabes, yeah Vitamin D does seem to go hand-in-hand with low B12. I know a lot of people on the pernicious anaemia forum have low Vit D. I too was just in the obese category at 14 stone at one point, just before I had a gallstone attack. Ironically, I suspect losing a stone in weight just before then was what triggered it! Since having my gallbladder out I have been able to keep my weight at twelve stones, for two years, but that is 2 and a half stone more than it should be. Unfortunately, despite now eating a healthy diet, repeated dieting over the years has screwed up my metabolism right royally. Either that or it IS indeed some kind of intolerance reaction to wheat. I know some people who give wheat up have the weight drop right off them. Well, we'll see what happens if I am forced into an elimination diet!
If you have a Thyroid disorder it is not unusual to be gluten intolerant and it is very common to have constipation due to being hypo - and the knock on effect of being low in D, b and iron.... often overlooked in a GP or specialist setting.
Hi Mary! Yes, I'm taking your advice and asking my doc for thyroid tests at the same time. I have to admit though that my symptoms do match Coeliac more than thyroid (except for this bloody constipation and weight gain), but you never know....
I am afraid you GP will stick in a rigid manner to the sub standard TSH test, but it is common with an underactive thryoid to have constipation, and also insidious weight gain and also high cholesterol and gall bladder problems, most have gluten intolerance which does not show up in tests, but by elimination..... It took me years to realize that on top of everything else I had a Thyroid problem due to the ignorance and attitudes within the medical community... much better since I went strictly gluten free and tested my thyroid and took further action. Also a decent daily probiotic! MaryFx
What should I look for in the TSH test results? I know with B12, and my previous coeliac test, for that matter, the doc was very lax about interpretation, not taking low results seriously if they fell into 'normal' areas. What should I be alert for with my TSH test?
I'm Coeliac and have diarrhea and constipation...BUT I also have IBS and dairy intolerance. My IBS is triggered by fruit and veg and causes constipation. I follow a Dairy Free, Gluten Free diet and also keep to the Monash University low FODMAP diet for IBS...on top of that I omit fruit and veg that I know to trigger IBS..... oh and by the way I'm type I diabetic since childhood!
If I eat Dairy I get Diarrhea. If I eat fruit and veg I get severe wind, pains and constipation. If I eat Gluten I get incontinent Diarrhea. .......so I recommend getting on the internet and buying the Monash University Low Fodmap diet booklet $10 and try the FODMAP diet and see if your constipation goes. It would only take a couple of weeks trial to find out if this is the answer...well worth the bother. You can eat certain groups of foods ie, oranges but not apples. carrots but not beetroots etc etc etc
I'm under a NHS dietician and have iron tablets, high vitamin tablets, and a mix of vit b tablets, and fish oil (yuck).
Hi Jnbina, that's weird, because I saw the Fodmap books in my library catalogue and thought they looked interesting, but felt it was too soon to look at cook books and so forth since I haven't been diagnosed. I shall certainly get them out if I get a positive diagnosis.
I know what you mean about the reactions to different foods. White flour literally constipates me overnight. One burger bun = 4 days constipation, no exaggeration. On the other side, if I eat any form of pulse, bean or lentil I bloat up to nine months pregnant, get bad pain and acid reflux and, if I make the mistake of eating it more than once, I am in the toilet with a runny gut. I've always assumed everyone gets that with beans though; they're known for it! But perhaps not...
I can highly recommend the MONASH UNIVERSITY FODMAP DIET,, its not a cookbook, but the rules of the 5 groups of foods that can affect you, a method of finding out which ones react with you and then a list of all the foods and details of what group they fall into so you can avoid them. after you know this you would then move onto a cookery book...but get the rules sorted first, or you will be stabbing in the dark. Monash University in Australia have a dept working on this and in Australia they are leagues ahead of the UK on helping people with stomach problems.
That does sound interesting. My library has two books; one of the 'diet' itself and the other a cookery book by them, assumably using the rules. You've convinced me to have a look at them. As for being leagues ahead in Australia, I can only say they can't be any worse than us! Thanks again.
When I get wheat contamination in my food I can either have a bout of diarrhea or what I think is more like paralysis of the gut - no bowel movement for several days. Others may describe this as constipation.
Hi Pvanderra, I want to say AHA! Because that exactly describes what I get. It all just stops. When I had gallstones I had REAL problems with exactly that. I would go into my doc and say 'It's like nothing's moving'. You can kind of feel the peristalsis in your gut, you're aware of food moving through it, but when I had gallstones, nothing was moving. It was actually quite frightening. He put no emphasis on it and it used to kind of frustrate me. I wanted to shout 'Why aren't you taking this seriously?!' because it always felt important to me. Significant. Ever since I had my gallbladder out, that feeling has largely gone, EXCEPT I have recently felt that my body isn't absorbing fats again (I have had the odd tell-tale greyish poop), which is exceedingly odd since my liver must be doing bile dumping, having no gallbladder 'n all.
Anyway, it's never been quite right since the op two years ago, as in the constipation is back, not quite as bad as pre-op, but too much in my opinion for someone who has a load of bile dropped in every time she eats. Ah, if only I could climb in there and see it all working...
Yes, I was "grey zone" on my B12. I am receiving treatment for it and have no complaints about that - other than the fight I had getting it! But it does seem to be working - praise the lord. It's because of that that I am looking at coeliac and other autoimmune conditions, trying to get to the bottom of what might have caused the deficiency.
I am not a confirmed coeliac but I do follow a partial gf diet. Yes, I get constipated every week for a couple of days but adjust my foods and usually get back to normal poo.
If you suspect coeliac disease then PLEASE get the tests started before you do anything else - you could jeopardise any diagnosis if you don't.
Constipation occurs with consumption of some foods, illness, lack of exercise and some gastrointestinal problems. It occurs in coeliacs with poor gut motility (my consultant said so). It's also a symptom of bowel cancer - hence the urgency to get CD either confirmed or excluded.
Overweight coeliac disease has been linked to overeating due to not being able to get enough nutrition from foods.
Jacks, thank you for all of that - really good information. It's great to hear your consultant said low gut motility could be the problem. Mine's feels exactly like that, and has done for years, despite a wholewheat/ fruit/veg diet to shame any hardcore vegetarian into thinking they're a junk food eater. And I am absolutely fascinated to hear that overweight coeliac has been linked to overeating due to lack of adequate nutrition. As I've been eating extra wheat in preparation for a coeliac test, I've come to realise how taxing I find it. Only yesterday I was discussing with my partner how unsatisfying I find sandwiches. Doesn't matter what I put on them, how nutritious the bread, how stacked it is with salad; 'it doesn't feed me' is what I always feel. Like it's not proper food.
It's long been a subject of some contention in my house that my partner is a 'carb junkie'; he loves his plates of (healthy) carbs. I can't stand them. Unfortunately he cooks, so it's taken me a long, slow time to stand up for myself on the carb front! We had stopped eating meat and fish entirely until I started getting ill and insisted on it as the only thing I could eat, which was true.
I don't know if this is a 'simple' gluten intolerance or something more serious, but there is something to it. Now if my doctor can only be convinced to fight the lab for a second coeliac test for me then I'll at least have a better chance of a sound diagnosis. I can't believe I am being held hostage by a blood lab!
I am not celiac, but I am gluten sensitive as is my son who has asperger syndrome. Inability to uptake b12 can be related to several factors. intestinal sluggishness from lack of pre and probiotics is the most common and definitively causes constipation. feeding your gut with high value prebiotics and adding probiotics will sluff and clean your bowels. we can hold 25 pounds of feces in our body when we are in this state, some more. the weightloss first happens due to the emptying of the bowels and it is at that time it is imperative to quickly add large amounts of probiotics to colonize the intestines in order not to allow yeasts and other bad bacteria to get a hold. keeping your good bacteria well fed and happy will increase their numbers. once probiotics are well established and you are regular and have soft stool the texture of banana, then you will be more able to uptake other vitamins and minerals, since it is the probiotics job to break down food and they produce b vitamins as well. you will absorb these much better and faster and you will feel emotionally and physically improved. at first one needs to get away from the sugars and starches for a while in order to stop feeding the bad bacteria and the yeasts in ones body, add green smoothies (raw greens and fruit) this is your prebiotic and your fiber broom to help eliminate, drink lots of water and add probiotic food such as easy home made fermented foods or buy it in pill form or powder to add to your smoothie if you like. I prefer to eat mine as fermented food with each meal. such as kimchi, sauerkraut or lacto fermented veggies. they are very delicious and will help you with sugar cravings. I hope i have provided you with enough information to go and research this subject and bring you back to health.
Hi Ramona, that is very kind of you; I appreciate it. I do eat live yogurt every day, and have done for many, many years, and I'm quite diligent about keeping sugar out my diet, except for crazed binges when I crack! But these only last a day or two nowadays and a crazed binge is now an apple tart from Asda's. It's all my sorry gut can tolerate - and I use the term tolerate loosely!
If I can't get any joy out of coeliac testing or thyroid testing I plan to go on an elimination diet and I will add a probiotic in then, if needs be. But I'm not a great fan of faddish dieting. I've had my fill of it over the years and the misery it has caused me. But I do thank you for the tips; I shall definitely bear them in mind.
Sounds like it could be colitis other than coeliac. x
Not all things are coeliac disease. If you've read my other posts I keep banging on about not getting fixated with a diagnosis and missing the real picture. Colitis (ulcerative and others) and crohns generally result in looser stools, so these people take steroids (and more) to dampen the overactive immune system.
So what I was saying is don't lose sight that constipation can be something worse than CD and after 15 years you really should be asking to be referred to a gastroenterologist. They will do all the tests necessary to get you the right diagnosis and CD is not the only blood test for gut problems.
Hi Jacks, I couldn't agree more with you. The trouble is if you work with too many possibilities at once it does your head in. Not to mention the fact that you start confusing the symptoms of one disease with another. What I tend to do is look at the most likely suspects and line them up first. In my case, that would be coeliac then underactive thyroid. After that it would be something like lupus, but I am too far removed from that diagnosis for it to be tenable, in my opinion.
At the moment I have a strategy of coeliac, thyroid then an elimination diet, because I think the next most likely suspect is a leaky gut and/or wheat intolerance. If THAT doesn't offer anything useful then yep, the gastroenterologist is absolutely next in line. I think an endoscopic examination would be called for. I've had all these complaints for years but no-one, including me, knows what the inside of me actually looks like, or if it is showing any signs of damage.
The only constructive test I've ever had was ultrasound and that led to the loss of my gallbladder, eventually. Other than that I am blundering around in the dark. Oh, I have had an MRI but all that found was my brain was absolutely normal, so apparently I have a completely inexplicable case of trigeminal neuralgia - me and 99% of all the other sufferers! Unfortunately this means I am on my own trying to track down how I developed a B12 deficiency, so I'm going about this the best way I can.
Hi Chancery. I am coeliac and suffer terribly from constipation. I used to go to the loo maybe every 3 days and would be in pain with it before diagnosis but thought that was the way my body was as I knew nothing about coeliac disease.
I was diagnosis by chance at the diabetic clinic I attend. They decided to test everyone who came to the clinic that day as type 1 diabetes and coeliac disease often go together.
I have developed much worse symptoms since being diagnosed and coming off gluten. I have also recently had to stop drinking coffee as it gives me the same constipation reaction that gluten does. This reaction is horrible as I am sure you know but, without being too graphic about it, it keeps me on the toilet for hours in absolute agony feeling like I am giving birth and it is stuck! I have had to phone the nhs 24 before now panicking cos I can't move away from the toilet as am in too much pain and after the constipation comes a bit of very watery diahorea! I hhave been taking senna and lactulose When it is bad but not sure how much either helps!
Well, Elspeth, your comment is very reassuring to me, but an absolute misery to you, I'll bet. Mine's isn't that bad unless I've been hitting the white flour for two or three days then it's EXACTLY like that. I have many times been in the horrible position of being (stop reading now if you have a delicate disposition!) stuck on the toilet, feeling the 'sphincter-open' position but it's stuck and not moving. It has to be one of the grossest, most upsetting sensations in the world. And it will invariably lead to something being hurt.
No, my problem is generally one of reluctance, for want of a better word. So that my stomach is bloated and out of sorts and you feel like you want to go but nothing's doing. Then when you do go all is concrete. Nasty. More than anything, it's bizarre considering how healthy my diet is, It's all wholewheat, fruit and veg, and has been for many years, but all I can say is they lied. It doesn't work. And it's not a sedentary thing either, because I walk every day.
But, seriously, thanks for telling me. The first thing my doctor said when I suggested retesting for coeliac was "Do you have diarrhoea?" I had to go through the whole explanation of about 10% of people presenting with constipation, but he was, as usual, very sceptical. I think he thought I'd made the statistic up. I feel uncertain enough about my 'credentials' but docs don't help. You have to fight to get anything tested. The fact that you have seven positive symptoms seems to count for nothing if you have one negative. Ah well, it was ever thus...
I was diagnosed 5 years ago and try very hard to eat gluten free but don't let it rule my life and. but I do suffer with awful bloating and constipation. sometimes I go 3 or 4 days. my doctor handed me a prescription for 2 months of laxatives, without question . I can't take them it makes things worse. I just bloat out more and more.it's miserable. I eat strict gluten free and fresh fruit meat and vegetables. absolutely no pulses omg disaster ! chrissy .brighton
Hi Chrissy, I feel your pain on the bloating front! As regards the laxatives I can only tell you what works/doesn't work for me. Fybogel isn't bad, but is very slow to take effect and never really takes off, if you get my meaning. Plus, it definitely does bloat, sometimes quite badly. While on a course of it I tend to look nine months pregnant the whole time. There are a couple of other sachet ones, whose names I can't remember now, and they were all same-o, same-o: bloating and very slow to do anything (I remember Movicol was one - did nothing for me).
The only one I've found effective is Lactulose. This is VERY good. It's a sugar, can't remember what type now, but I suspect fruit or milk? Anyway, you take it twice a day and it is very effective. Quick-acting, and, more importantly, doesn't bloat up the gut. What's more, I read in a completely unrelated book recently, that it is very good for repopulating the gut with 'better' bacteria. This was in a legitimate scientific work, not an alternative health article, and I remember thinking 'Ah, that's why I got quite good long-lasting effects from it'. Unfortunately my gut has been doing a dance recently, and for the first time in my life I had an 'episode' of tummy runs for about a month, but now I am back to constipation again.
I know you are supposed to report changes in bowel habits to the doctor, but really I've reached the stage of 'why the hell bother?'. There really is no point in telling my doc anything: it's all either irrelevant or a product of your diseased imagination.
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