little advice from fellow Coeliac’s

[RJane83]

hi

Was wondering if any other coeliac out there has had similar experience/symptons?

I got diagnosed with Coeliac disease about 4 years ago I follow the diet, have separate toaster, chopping board etc

I’ve been suffering with terrible upper tummy and back passage cramps, blood and yellow mucus present at times when it’s at its worst - terrible diarrhoea - I lost a significant amount of weight last year and was finally taken seriously by the GP and then consult at hospital as I kept a diary of everything including food & photos . This has been going on for a while now and I had to give up job due to accidents - in between I’ve also suffered unprovoked pulmonary embolisms.

I’ve had colonoscopy and some other tests that have come back clear apart from blood in samples , but had gastroscopy done today and was told villi in duodenum are flat - stomach and oesophagus are perfectly fine ( when I was diagnosed with coeliacs I was told I had a very pale poorly stomach ) so it’s good that that’s better I’m just slightly confused as I pretty much live on rice, potatoes meat and vegetables and warburtons gf bread for a sandwich at lunch when I’m at work.

Also my bloods always come back clear of any gluten tests.

My Nan when she was alive had coeliacs and my mom and brother have it also, there is IBD that runs in my family also Crohns & colitis.

Is it just that I haven’t fully healed yet ? Or could it be refectory or something else ?

[Regalbirdy]

Hi,

I’m sorry to hear of all your difficulties.

It sounds like you may have some secondary food intolerances going on, which is something that I experienced following my diagnosis.

I can only speak from personal experience; however, I had to stop eating dairy, soya and all processed gluten-free foods – including GF bread. After a while, I noticed that ingredients in the processed foods were causing me to have diarrhoea and a stomach ache.

These days, I follow a low-carb diet using only naturally gluten-free foods. Whilst I love potatoes and rice, I found eating them in excess was bad for me. If I deviate from being low carb, my health declines again.

If you haven’t already, it might be worth keeping a food diary. Some problems can show up very quickly, other symptoms can take a day or two to pin down to the exact cause.

Good luck on your journey to wellness.

[RJane83 in reply to Regalbirdy]

Hi

Thank you for replying.

I do keep a diary I found it’s useful for showing consultant.

I have got a lactose intolerance and do substitute milk with soya milk- so this might be something I need to look at - thank you.

Fingers crossed 🤞🏻 I get some answers from my biopsies.

Best wishes

Rach x

[Dottie11 in reply to RJane83]

I take lactose tablets and they are really helpful and less gut pain. Lactose in so much even my Asthma sprays which I have to have. Also take Lactose free milk etc.

[Dottie11]

I had a late diagnosis and have been told that Refractory can sometimes be the cause in my case. The meds for now are a low dose type of steroid. But for you bear in mind the gut takes at least two years to heal. So it might be you need more time and then another scope. Have you ben referred to dietician ? Very helpful.

[RJane83 in reply to Dottie11]

Hi

Thank you for replying.

I’ll be honest when I was first diagnosed I was under the dietician and gastro department had one appointment but I fell through the cracks of the NHS and got lost in the system.

I have been apologised to for being missed as I’ve been suffering since diagnosis- but my GP practice wouldn’t take me seriously even with photo proof etc the ball started rolling again then I suffered the blood clots on my lungs and everything got put on hold again and then COVID happened - it’s only really since I lost so much weight last year and the amount of visible blood present in stools I’ve been listened to - I kept being told it was just gastritis by GP and offered gastro resistant meds which didn’t help 😞

My mom has said the same as yourself- it took a long time for her villi to heal but hers where seriously damaged almost non existent.

I will ask about seeing the dietitian again, thank you 🙏🏻 and I hope you are ok

Best wishes

Rach x

[Dottie11]

I know have difficult this can be re diagnosis as went through the same. Periods etc as you say , then IBS and so on. Well done for getting there its tough sometimes. Maybe try Celiac UK for advice from one of their dieticians. It is good that you Mum has so much knowledge to share with you. Take care. xx

[cranberryt]

When they did your colonoscopy did they take samples for testing? Mine was visually normal but the samples showed I had microscopic colotis.

[RJane83 in reply to cranberryt]

Hi

I believe they did , but had a letter today from consultant to say after small bowel MRI there’s thickening inside the walls of my large colon? It’s all really confusing- I feel like I’m a merry go round tbh.

I hope you are on the road to recovery after your diagnosis.

Best wishes

Rach x

[bookish]

Hi, it may be that you need to be completely grain free for a while - even potato can be cross-reactive. Corn can cause as much damage to the villi as wheat gluten, but doesn't get tested for, and is in many GF products. It was corn that I reacted to first when I went GF, then rice, then potato, so I went on an autoimmune anti-inflammatory diet and ditched the whole lot. I no longer eat anything that needs milk so I don't need a replacement, but got a big improvement when I stopped using dairy. It is likely that you nutrient absorption is badly compromised - are you supplementing and getting B12 injections?

[RJane83 in reply to bookish]

Thank you for replying

I do eat a lot of corn tbh so might be worth mentioning.

I don’t get B12 but I have a vitamin D deficiency so supplement for that, I’ll look into that thank you

Many thanks & best wishes

Rach x

[bookish in reply to RJane83]

You are welcome! Bear in mind that they may not know about the corn. Vit D and/or iron often are the first affected, but B12 is hugely important and testing is poor (inadequate and inaccurate). Start with a serum B12 and serum folate but those cannot rule out a deficiency, as if B12 is low, folate may look high (or normal, or low...) and a cellular deficiency of B12 can show as low, normal or high serum. There are other tests that can help to diagnose but nothing can rule it out, so a trial of injections could be the way forward. Oral supplements can fix a low level in the blood but without repairing damage, as it is sometimes a problem getting the B12 from the blood into the cell, or working well within the cell. With low iron, other markers in the blood that might show a B12 or folate problem can be obscured. Best wishes

[JanCymru]

Sorry to hear you are having a really rotten time.

Would suggest contacting Coeliac UK (if you are not a member, do join they are really helpful).

Food diary is a good idea as a back up plan, to see if there are any patterns in the foods you do manage to eat.

Perhaps ask to see a dietitian - FODMAP foods sometimes aggravate the gut (I know it affects me, but not wholesale just certain foods to avoid for me).

I can't tolerate skins on things like tomato and peppers, so skin them etc., Mushrooms too - I can tolerate a few every now and then, but then have to have a gap of several weeks, otherwise they simply give me cramps and pass through undigested (sorry for too much info!), and then I find the whole gut is irritated and every kind of food passes through undigested for a few days.

Some swear by digestive enzymes, I think there are some by Holland & Barrett that are quite good, but I wouldn't go down this route until you've exhausted all possible tests and checks and appointments with whoever you can get to listen to you.

Hope that helps a little bit, come back on here whenever you need. Best wishes to you.🥰

[Researchfan]

Hi.

Sorry to hear.

It might be you’re still healing. It can take years depending on your age and how badly damaged at diagnosis. The gluten tests being clear is excellent. Sometimes the older at diagnosis the gut never recovers 100%. As for refractory your specialist would have to diagnose that once other things been ruled out and then there is special test for it.

It’s very possible to suddenly develop other food intolerances or even food hypersensitivity separate from coeliacs. There are many other GI disorders that can also be put into remission or at least helped with diet therapy. Cows milk is a culprit in practically most gastrointestinal disorders - more so in children but so too in adults. You avoid cows milk but Soy can cross react unfortunately? Soy can also cause villi blunting in susceptible people, as it’s one of the listed “food-protein induced enteropathy” culprit foods similar to gluten. It’s also been implicated in food hypersensitivity as the cause for abdominal pain, rectal bleeding and change in bowel habit in this medical study,

cghjournal.org/article/S154...

Table 1 list of cases and culprit foods may be helpful as a pointer. (It was for me personally.)

wheat, dairy, eggs, soy, legumes, cocoa (chocolate)…orange, tomato…

Also In the “few foods elimination diet”, which is used in another GI condition related to allergy, the top six food, wheat, dairy, eggs, nuts, soy, fish/seafood are strictly eliminated in addition to any suspected sensitivities, then if symptoms resolve reintroduced one at a time over weeks to figure out the culprit (s). Handy to have a knowledgeable Dietitian!

Mentioning all these as they are in common. It might be you need to eliminate the gf bread and all grains for a while. (The bread also contains egg in case that’s an issue? And yeast can be allergenic to people with crohns according to some medical literature?? Not to mention potential cross reactive with gluten (along with corn / maize).

I wouldn’t rule out white potatoes as a much rarer culprit in GI issues and food hypersensitivity too! Oh how it took me a long time to figure and accept that one out as potatoes are highly addictive as they are the same plant family as tobacco (nightshades) also implicated in autoimmune conditions along with peppers, chilli and tomato but again it depends on individual susceptibility like allergic disease. Then rice, though it’s supposed to be least allergenic of grains it’s still a problem for some. Rice is implicated in delayed type allergy especially in other GI disorders (some published data though limited mostly to childhood FPIES cases).

Hope this is helpful info. The point is to push your specialist Docs for an acceptable diagnosis and then figure out the food. 9 times out of ten it’s the food!

🤗

[penelope2]

Hi Jane you have lots of good info already but I will tell you my experience. Had ibs most of my adult life, now in my late 60s with ataxia caused by the gluten. Tried FODMAPDIET for years, migraines, brain fog then about 14 years ago the ataxia symptoms started. Fatigue, really aching legs, couldn't walk straight and coordination, sensory problems. No doctor ever suggested the link with migraines and ibs might be caused by gluten. Out of desperation I self diagnosed and went GF. I knew time was not on my side. Things improved dramatically but it took many months. Because I still had the odd gastro symptoms despite being 100% GF and time for me was running out re my age and the ataxia and had spent years keeping food diary's and trying to figure out what foods i was sensitive too. I researched and found a nutritional therapist who was knowledgeable about gluten and the neurological symptoms it can cause. I had a private CYREX test done, lab is in the US. The NT guided me through the results. Dairy, rice, buckwheat, soya, corn, millet all came back positive on top of the gluten. It is a very restrictive diet, involved high dose supplements that I am still on, gut healing too. NHS dietitians this sort of area does not come in their remit. I am now under the care of Professor Hadjivassiliou at Sheffield. Hospital labs do not do these sort of tests and you may not find a NHS specialist who has got the knowledge or even believes in GA. I'm sure you will know that about a third of coeliacs test false negative for CD. And about a third of coeliacs have neurological problems. I believe there is a cross over between CD and GA, experts just don't know enough about this and why some of us go into an autoimmune state which can lead to GA. I don't want to scare you but you need to be aware of these problems. Do research PubMed is good so you are knowledgeable and can ask specialists questions. Dairy problems is common with coeliacs but there can be other foods too. Good luck.

[quanglewangle]

Hello

I wont bore you with my 30 year journey but would like to say a few things.

My story started with an elimination diet triggered by my physical and mental decline linked to my 3 stone (45 pounds) weight loss that brought the eventual coeliac diagniosis. A gluten free diet and greatly limited food range intake enabled me to build back up and ten years later I was running marathons.

BUT diarrhea (Up to 15 toilet visits per day including explosive episodes (out and about in town and country and even in the house) have kept me within reach of toilets wherever I go.

Colonoscopy, sigmoidoscoppy were inconclusive and food intolerances - particularly cow's milk, soya, alliums, brassicas and some legumes - have been catered for with partial success . I was referred to NHS Gastroenterology about a year ago and about six months ago I got an email basically asking me if I was recovered, dead or wanted to stay on the list - so I'm still waiting....

Then a new locum GP doctor posited Pancreatic Insufficiency and prescribed pancreatic enzymes, and use of these plus an intensive course of probiotics has greatly improved matters. Two/three toilet visits per day, no more trouser-filling accidents, poo that is less and less yellow and floaty - almost normal at times.

By the way I also learnt somewhere recently that 30% of Coeliacs have Pancreatic Insufficiency and would clearly benefit from enzyme treatment ......

AND now there is a UK and Europe-wide shortage of the enzymes and I cannot get my Prescriptions fulfilled with delays of up to a year being suggested!!!!!!!!!!! AAAAAAAAAArrrggghhh

[Magicmarker28]

Hi there, have you thought of doing an intolerance test?

I had wild symptoms after following a strict diet, also had to remove dairy.

I literally took all the red and amber flags out of my diet following the intolerance test. This brought me back being almost human, I still struggle with some foods, unknowingly. Fatigue is an issue, some days are better than others. I would eliminate as much processed sugar too

It’s a process of eliminating , it certainly helped me. I’ve since reintroduced certain elements after a significant period to see if I can spot the real culprits.

The Intolerant test I did, meant sending hair samples for testing.

Hope that helps…

Some items that say are gluten free still affect me, so maybe try to eliminate any or as much processed foods as possible too

good luck and hope you get some clarity and recovery asap.