Aphthous ulcers

[Starjump]

Hi. I was diagnosed with coeliac about 18 months ago, told to give up gluten, then oats and soya too, but have continued to have diarrhoea and bloating but no pain ever since. I’ve had lots of scans recently to get to the bottom of it and an endoscopy showed my villi had grown back so that was good. Then. yesterday I had a colonoscopy where they found ulcers in my small bowel and ileitis. Has anyone else had his? I was so woozy from sedation that I can’t remember what the doctor said and my follow up isn’t for a week or so. Thanks in advance

[pvanderaa]

Have you given up dairy as well? The casein protein in whey is very similar to gluten. Celiacs have to give up both gluten and dairy.

Have they checked your vitamin B12 levels? Illium issues can affect this. Don’t let them say 1 point above the lower limit is “normal”, you want to be above the midpoint (i.e. >500 pg/ ml). They should test your folate levels as well.

I can also get diarrhea from too much UV light exposure (i.e. sunlight). So I take Vitamin D daily as well as wear sunscreen when i have to work in the garden.

[Starjump in reply to pvanderaa]

Thank you for replying. I have given up lactose on the dietician’s recommendation. I think it may have helped a little bit. It’s always so hard to know! And I’m so loath to give up more food as I feel like I’m already so hampered by what I can eat! Tho lockdown helps of course... Im on a strong vit D sup. But I will go back and check my b12 levels. Thank you so much

[pvanderaa in reply to Starjump]

Lactose is the sugar, casein is the protein. It’s in everything: butter, ghee, curds, cheese, yogurt, protein bars, energy bars, whey powder supplements, in addition to milk.

[Starjump in reply to pvanderaa]

Oh no! Love my yoghurt!

[Penel in reply to Starjump]

Perhaps try some lactose free yoghurt? I make my own with a small electric. yoghurt maker. Lactose is very low in butter and some cheeses. You may find that the problem resolves itself once your villi are really well recovered and able to produce the lactase you need to digest lactose.

[Starjump in reply to Penel]

Thank you. I hope so

[pvanderaa in reply to Starjump]

Lactose is the sugar and you can take lactase for issues with it.

There is nothing but eliminating dairy from your diet if you are having an issue with the casein protein in dairy.

Try going without for one month. Then try your yogurt once and see if your symptoms show up in a sequence over the next 48 hours. Keep your own log book as you experiment with your diet as the symptom is always delayed from its cause.

[jox1 in reply to pvanderaa]

Hi pvanderaa - diarrhoea from sunlight sounds odd. High calcium levels from large vit D dose could cause it - and sunlight adds more vit D? Or very light coloured skin?........

[pvanderaa in reply to jox1]

Odd or not, it is my symptom for the past 12 years. It started at the same time my injections started. Also, I take 1 normal Vit D daily to make up for the lack of sunlight in my life.

If I don’t wear SPF50 or greater sunscreen before going out in the sun, the diarrhea shows up about 6 hours later. The softness of the poo is pretty much proportional to the duration of sun exposure. Also urine color is much darker (golden) that evening and I can get brain fog the next day.

Outdoor swimming, without protection, I can also break out in hives which then turns to eczema and getting that to heal takes weeks as any further exposure flares it back up again. This was my first indication that something was different after I started B12 injections for my B12 deficiency which has resulted from stomach surgery 17 years earlier.

[jox1 in reply to pvanderaa]

Thanks for your detailed reply pvanderaa . The only thought I have is that your response to sunlight sounds a bit like the response to excessive sun e.g. dehydration and dark urine. So I wonder if your vit D levels are actually good. Vit D problems can also trigger dehydration type symptoms. Or perhaps because of stomach issues some kind of vit D absorption issue? Just my thoughts really and not definitive....

[Hidden in reply to pvanderaa]

" Celiacs have to give up both gluten and dairy." - incorrect. If you are fine with dairy, and cause no issues or symptoms, absolutely no reason to give it up as a coeliac. Some may struggle with dairy whilst their villi are damaged (will not produce enough of the necessary enzyme for digesting milk), but do recover down the line and may be able to re-introduce dairy. As to the sunlight issue - that sounds more like a separate immune issue, rather than coeliac.

[Hidden in reply to pvanderaa]

Your sunlight issues sound like mast cell activation. Nothing to do with coeliac, but coeliac can mess up your immune system for MCAS.

[nellie237]

Helo Starjump, I'm so sorry that you are having this dreadful time of it. I can't be of any use I'm afraid, but please let us know how you get on next week.

[Starjump in reply to nellie237]

Thank you! That’s very kind of you. I’ll let you know

[Waulahn5]

Hi starjump, I have had coeliac disease for over 12 years and am seen by the coeliacs clinic approx 3 or 4 times a year. In fact I have a video call tomorrow. Never have I heard a doctor or gastro nurse say people with coeliac disease must give up dairy

That’s not to say that maybe some people with coeliacs are allergic to dairy too

So I have to disagree with with a reply that was given to you earlier.

Hope you feel better soon

[Penel in reply to Waulahn5]

The problem can happen because of gut damage. In newly diagnosed celiac disease patients, secondary lactose intolerance is common due to the loss of lactase, an enzyme that digests milk sugar along the lining of the small intestine

[Starjump in reply to Penel]

Can the lactose intolerance be temporary, do you know? It was suggested that I just trying cutting out lactose and seeing if it helped. But I’d hoped that wouldn’t be forever. Over optimism?!

[Penel in reply to Starjump]

There’s no way to know if lactose intolerance is going to be temporary or not, I’m afraid. It’s all a question of trial and error. I have not regained the ability to digest lactose.

It is probably a good idea to start by cutting out dairy completely for a while and monitor what happens. Just check other options to make sure you are getting some calcium in your diet.

[Penel in reply to Starjump]

I should have added that if you are going lactose free, make sure that if you are eating yoghurt it is labelled as lactose free. Ordinary yoghurts have a low lactose content, but may not be low enough. You can get lactose free milk etc in most large supermarkets.

Google is your friend: you check lactose levels in different dairy products and decide which ones you might be able to try over time.

[nellie237 in reply to Waulahn5]

I was dx coeliac in Nov 2020 - I am absolutely lactose intolerant and expect to be for some time yet, although hopefully this should improve at some time. Coeliac UK endorse this view. Probably, it was not widely known 12 years ago.

[Starjump in reply to nellie237]

Sorry to hear that. Are you well now?

[nellie237 in reply to Starjump]

Thank you for asking - if you've read my profile - the answer to that is, no not really, but time will tell. I guess this is the same for you (only very different issues), and I wish you well. As far as lactose intolerance goes, from the reading that I have done it can last 18mnths - 2 years, then re-introduce slowly. 😊

[erdfreak]

I have to add my voice to the lactose intolerant group. Made the mistake of trying to move to richer milk just after being diagnosed, I think I was just about coping with milk before that, but not any more. I remember reading advice around that time that certain coeliac support groups recommend avoiding dairy, at least to begin with while the villi is recovering. I too use an electric yogurt maker, which when setup for 24 hours produces SCD yogurt. People on the SCD diet have to be dairy free. This 24 hour yogurt, and extra mature cheddar with close to 0% carbohydrate sugar causes me no problems, I eat both daily.

[Hidden]

Hi Starjump. Ceoliac can mess up the gut bacteria, so you would probably benefit from a SIBO test (small intestinal bacterial overgrowth) - it's a breath test that checks for methane and hydrogen producing bacteria that cause the gastric upset. It's treated with a course of antibiotics. Diet alone will not address it, but SIBO loves sugar (including lactose) and refined carbs. You may also wish to explore candida overgrowth - NHS does not test for this (if your in UK) but you can order your own private test online. The other element (which I'm exploring at moment) is mast cell activation/histamine intolerance. I find Amy Myers website helpful for covering all these issues (amymyersmd.com). Also, if you eat a lot of process gluten free foods, they contain a lot of additives which also upset the gastric tract. I'm not familiar with the ulcers your refer to, but looking into the various additional issues for coeliacs could maybe bring you some answers.

[Starjump in reply to Hidden]

Sounds worth discussing with the doctor when I see him next week. Thank you so much for that

[Hidden in reply to Starjump]

No worries. Your GP will be invariably clueless on all this, but do speak to Coeliac UK about SIBO, as seems to be issue for some with coeliac. GP won't be aware of MCAS, so speak about that in terms of 'histamine intolerance', if you plan to explore that also. In terms of candida - NHS don't even mention that in terms of gut issues. You are in the zone of having to figure many things out for yourself here. Lots end up in the 'still ill but gluten free' - the gut is damaged from coeliac in a way that gluten free won't resolve on its own. I would suggest, if you can afford, to find a good functional medicine dietician.

[Georgielouise]

I agree with Benjamin 123 - I have been coeliac since the age of two - now 44 - and have never been told to give up dairy .....

[Starjump in reply to Georgielouise]

Excellent!

[Researchfan]

Hi Starjump.

I read your post and wish you well on getting on the right track to fully healing your gut.

I’m not a DR but Ive researched the scientific journals a lot over the years and my first thoughts reading your ongoing diarrhoea and ulcers is possible Crohn’s Disease or gastrointestinal infection. But could be something else an not necessarily from coeliac disease. Your follow up with your Doctor will diagnose correctly hopefully figure it out and get you well.

Regarding dairy and coeliac disease everyone is individual and some may have ongoing symptoms and inflammation because they are also sensitive to dairy proteins casein and/ or lactose in milk. It’s in addition to coeliac not necessarily because of coeliac disease.

Dairy is one of the top allergens and can be an issue regardless of Celiac diagnoses. Unfortunately a damaged gut (from Celiac disease or any gut issue including irritable bowel disease Crohns or Ulcerative Colitis) is going to be sensitive until it heals fully. But with Coeliac, also at higher risk for other autoimmune disease.

Treatment in addition to a strict life long gluten free diet is individual.

Research clearly shows upto 50% of Coeliacs also react to dairy protein similar to gluten. If you had to give up oats and soy you may benefit from giving up milk. Sensitivity to soy goes hand in hand with sensitivity to milk proteins. A minority of Celiacs react to other non-gluten grains such as oats and corn/maize and casein in milk and yogurt like gluten. If going lactose free hasn’t made a difference trial 1 - 2 weeks with no dairy. You can get coconut yogurt if need to substitute yogurt though it’s expensive.

The Specific Carbohydrate Diet SCD might help you if you look into it, look up Elaine Gottschall “Breaking the vicious cycle”. Or the Autoimmune Protocol of the Paleo Diet.

Yogurt might be ok to reintroduce (especially if you follow SCD guidelines) so don’t look at it as forever. It’s just a trial to figure out if dairy an issue for you. Have a holiday from dairy and see if your symptoms improve! If they don’t it’s unlikely dairy and at least you know

Take care and all the best

[Starjump in reply to Researchfan]

Thank you so much for all of that. That’s incredibly helpful. I’m going to try giving up lactose totally this week and just see how it goes. I’m seeing the gastroenterologist at the end of the week, so it will be a very helpful experiment. Fingers crossed it’s not Crohns on top of coeliac!