is it common for coeliacs to have crohns or colitis as well?

[RJane83]

hi

Coeliac disease runs strongly in my family, my Nan, mom and brother all have it - I had been tested regularly for it over the last 30 years but had severe food poisoning in November 2018 which triggered coeliac disease and a lactose intolerance. Tests always came back negative but never had any stomach issues until I was food poisoned - my results were from endoscopy.

I follow my gluten free diet strictly but have bouts of cramp in my stomach and loose bowels - currently I’ve been in pain on and off for 9ms Gp thought it was gastritis but I get flare ups of runny tummy now can’t even hold down plain rice - I feel exhausted all the time my joints hurt, there are times I can’t eat just so I can get my children school and get into work ( I feel anxious if there’s not a toilet around)

I got tested for colitis just after covid lockdowns as blood was in a sample but my symptoms had eased considerably before I was sent for colonoscopy and results came back negative and other testing got put on hold as I ended up having unprovoked pulmonary embolisms ( not covid related as had them previously before covid was around )

I’ve had to give up my job and start working for my husband so I can go home if needed - luckily he is understanding- just wondering if anyone else is going through similar?

my Gp requested some samples to be sent off this week so hopefully some answers 🤞🏻

[SabaAK]

Hi. Have you had your vitamins level checked? Most of the celiac patients are extremely deficient in vitamins especially B12,B1,D and Magnesium. I was struggling a lot with back pain,feet pain,bones and also gastro issues. I’m getting B12 injections once a month and taking bunch of vitamins on daily basis and it helps a lot. You can also visit celiac.com website,it’s a very huge platform for celiac disease people with lots of help and education in regards of celiac disease.

Saba

[RJane83 in reply to SabaAK]

hi

Sorry you are suffering with gastric issues and aches and pains 😞 it’s horrible isn’t it.

Yes I’m taking vitamin D prescribed by GP and supplements daily. I’ve always really been into fitness and health although with my issues at the moment I haven’t been able to exercise or feel very healthy the past 9 months.

My brother also a coeliac has been diagnosed with ulcerative colitis recently- consultant said it’s rare to have both - im wondering if it’s actually that rare.

[Researchfan in reply to RJane83]

Hi,

Have you read the late Elaine Gottschall book “Breaking the Vicious cycle intestinal health through diet”?

It’s a life saver. A godsend in my opinion. The author and researcher was ahead of her time.

I recommend anyone with IBD, Coeliac, IBS and all gut related issues learn the knowledge provided in the book. She detailed simply the SCD diet or specific carbohydrate diet approach.

It goes beyond a gluten free diet because that doesn’t get to the root cause. You got to ask what sets off the inflammatory cascade that switch’s on IBD crohns, ulcerative colitis, Coeliac Disease, and or other gut diseases in genetically susceptible people in the first place?

If you’re interested in the science all the scientific references are provided in the book to research yourself. Hundreds of research articles and studies back it up.

New research is coming out that backs it up - the gut microbiome research. But the book explained it all simply and provides a practical path to recovery.

X

[RJane83 in reply to Researchfan]

thank you so much, I’ll definitely be looking into this- my brother is coeliac and recently diagnosed with ulcerative colitis too 😞 - he is really struggling so I’ll pass information over to him as well.

[Researchfan in reply to RJane83]

Here’s a link to the Breaking the Vicious cycle website/video of Elaine describing the diet. X

breakingtheviciouscycle.inf...

[CATRYNA49]

Yes, I have had Celiac for almost 60 years and its skin disorder Dermatitis Herpetiformis or DH, for over 50 years and, went undiagnosed until 12 years ago. I have also suffered from bouts of IBS for those 50 years. It's a mess for sure. When the bouts of uncontrolled diarrhea occur, I resort to taking a product produced by an Herbalist, Dr Schultz, (THE HERBDOC) called Formula 2. It is the only thing I have found that helps and it is all natural. Also, you may find, like me, that going completely grain and soy free will help a lot. Stick with meat, veges, and fruit.

[RJane83 in reply to CATRYNA49]

hi Catryna

Thank you for messaging, I’ll definitely look into this thank you x

[CATRYNA49 in reply to RJane83]

You're very welcome, Happy I could be of help.

[blowinginthewind]

Hi Jane,

I was diagnosed at 50 and I am now 65. I had bouts of dodgy tummy most of my adult life, but given the dysfunctionality of my family, I hadn't known that loads of my second cousins were coeliac. I have stuck to gluten free and am mostly fine. Until about 3 months ago. I had intermittent bouts of diarrhea, which I dealt with by taking loperamide (Immodium but less expensive). It would clear after a couple of doses, and then come back at day or so later. After a few weeks I went to GP, who offered me a 2 week referral which I refused, and had me do stool samples, in case I had a infection. No infection in sample, and no blood or anything to indicate cancer in the FIT sample (which looks for cancer). The symptoms continues and eventually I agreed to the 2 week referral. My dad had ulcerative colitis, and my mum had diverticular disease badly. I had seen this consultant before over something unrelated, and he is sensible. I had a CT colonoscopy last week, and I am having a flexible sigmoidoscopy this week. Myself, GP and Consultant all think it is IBS, but because of family history - there is a LOT of bowel cancer in one of my dad's direct lines, they are are doing the tests. He says there is a slight chance of people who are coeliac getting colitis, diverticular disease etc, but it isn't very common.

I hope that this can be sorted for you - I am scared of going out just in case, don't want to be away from a toilet, and live in fear of an unexpected, sudden, visible bout of diarrhea.

I would ask the GP to refer you to the hospital, they can do more in depth tests, and get you a proper diagnosis - once dad was diagnosed with colitis, he was on medication and didnt have problems.

Good luck

Liz in Manchester

[RJane83 in reply to blowinginthewind]

hi Liz

Thank you for messaging.

I hope you get some answers from your procedures and it’s positive 🤞🏻must be so worrying for you to go through this.

My samples results came back today and there’s blood in all of them so my GP sending an urgent referral across- 🤞🏻I can get some answers soon.

RJane x

[blowinginthewind in reply to RJane83]

I hope you get a quite appointment and good results from your tests - if you are in UK an urgent appointment must happen within 2 weeks; I had appointment and CT colonoscopy within 2 weeks, but not have the flexible sigmoidoscopy yet - that is this Friday. I could have have it after my colonoscopy but didnt want to do that.

Good luck

Liz in UK

[RJane83 in reply to blowinginthewind]

thank you and good luck for Friday x

[Galaxy2]

Hi there, sorry I can’t answer your question as such but I do relate and sympathise.

I have celiac and have been convinced for years I also have colitis or crohns too but all my tests come back negative. I’m told it’s ibs when I get flares but at times my inflammatory markers are so high I’m sure it’s something else. I do get diverticulitis though and I know that if ever I’ve eaten gluten by accident (which is rare) that will trigger an inflammatory response and lead to diverticulitis, however the inflammation stays long after the infection goes.

I hope you get some answers soon, its so incredibly restricting to live with I know and can be such an embarrassing problem