I was emailed this study today, which I thought might be interesting for some of the coeliac's on here.
pubmed.ncbi.nlm.nih.gov/333...
They basically identified that there is a higher prevalence of SIBO (small intestinal bacterial overgrowth) in patients whose health didn't improved on a gluten free diet (prevalence of 31% compared to the control group, which had a prevalence of 15%).
Agreed, it is interesting. Also, this BMJ Gut Jnl- 18.6% of coeliacs possible SEBO at diagnosis. I will be taking both of these articles with me when I go for my 1st Gastro appointment in March.
Thanks for looking out for those of us who don't get better after giving up all the gluten. I have been on that path for awhile and it is extremely frustrating. It has been helpful reading all of the comments here and helping when I can.
Hi. Have you and your gastro considered other Non gluten grains and dairy as triggers?
This research explains why corn/maize that’s a common substitute in gluten free food can be treated like gluten by the body.
“Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients”
Juan P. Ortiz-Sánchez,1 Francisco Cabrera-Chávez,2 and Ana M. Calderón de la Barca1,*
Pubmed ncbi.nlm.nih.gov/pmc/articl...
There’s loads other research. It’s possible 50% of coeliacs react to casein in milk too.
Possibly oats too and not just cross contamination but the prolamins (oat gluten), and possibly saponins in them can cause inflammation and leaky gut.
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Hi. Thanks for the heads up on the problem with corn etc. Actually I basically try to stay away from most grains since I have read that a lot of them contain ingredients similar to gluten. When you try to eat but need to avoid all gluten containing foods, and many dairy foods, and foods that have too much insoluble fiber like fruits and veggies, and all the high fodmap foods, the choices of what to eat are few, and even the things that are available might cause me a problem as an individual, like eggs or nuts etc. I am starting again to go to a GI and getting all the tests which were all okay last time, but hopefully I may get some new information that I can use. Thanks.
Thanks for your reply to my reply. Hope you can get on track with healing your gut and figuring the right foods for you. I understand completely just goes to show we’re not alone. I’ve followed low fodmaps, low histamine, dairy free for 12 weeks (lost too much weight), scd (helped some with ibs though I lean more to constipation than diarrhoea), recently low fiber (great for getting rid of bloating and helped constipation), and paleo autoimmune ( recently took eggs out of my diet too), consistently gluten free. It’s funny but I indulged over Xmas and new year (I’m allowed a treat lol) and eaten gluten free baked goods including schaer biscuits, which tend to be maize based, but my tummy doesn’t like them, terrible bloating, that’s what got me reading up on corn again etc. Anyway sorry for going on. Well wishes
As per my previous posts, I've recently been tested for SIBO and now sorting out antibiotics. Just to make everyone aware - your GP will never have heard of SIBO, nor your NHS dietician. Literally, had never heard of it. The NHS gastro was repeatedly prompted by me for referal for SIBO test - she never mentioned it as a possible issue, until I raised a formal complaint and requested referral. Then it was lockdown and all tests cancelled, so eventually got a private test at cost of £250. Thanks for posting this Cooper27. More awareness we have of this the better. My joints are wrecked from the ongoing reactions I've been having. Suspect this has been an issue for years.
This is interesting. Good post. I wonder if there are any/many who can report on the successful treatment of SIBO, and if their ceoliac improved?
I think SIBO is quite a recent area of research in the grand scheme of things, many still haven't really heard of it outside alternative medicine spheres and YouTube/instagram influencers.
It would be an interesting question to ask though 
I think I have noted one other person on here (can't remember the thread) who believed they had a lot of cross contamination, and then was tested and treated for SIBO which solved the issue. One positive story at least.
I don't think that there is any excuse for not testing people for SIBO when symptoms have not improved. It is in the NICE Guidelines Sept 2015 :-
1.5.1Consider the following actions in people with coeliac disease who have persistent symptoms despite advice to exclude gluten from their diet:
review the certainty of the original diagnosis
refer the person to a specialist dietitian to investigate continued exposure to gluten
investigate potential complications or coexisting conditions that may be causing persistent symptoms, such as irritable bowel syndrome, lactose intolerance, bacterial overgrowth, microscopic colitis or inflammatory colitis.
My limited understanding is that approx 30% of coeliac patients do not improve on a GF diet, and 31% of those in the study that you link above tested positive for SIBO, which according to my math makes roughly 10% of all Coeliacs could be diagnosed by breath test alone.
Guidelines from the British Society of Gastroenterology on SIBO Oct 2020 do not mention Coeliac which is an omission that should be corrected. The conclusion of this article is-
"SIBO is clearly a common and often ignored clinical problem, but the evidence base for how best to diagnose and treat this condition, leaves a great deal up to clinical judgement. Evidently, this situation is most unsatisfactory."
bsg.org.uk/clinical-article...
A month into my diagnosis I am getting the distinct impression that Gastroenterologists are not all interested in Coeliac. I looked up all 9 NHS Consultants at my local hospital and all have an 'interest' in IBS etc., but not one with an interest in Coeliac.
That’s interesting. It’s unfortunate in the least that the NHS and a lot of gut specialists seem not to be up to date with the latest research and care for their patients.
‘Refractory Coeliac Disease’ or CeD that doesn’t respond to a gluten free diet can be treated with the strictest gluten free elimination diet such as the one Alessio Fasano ( Coeliac expert on pubmed journals and YouTube videos ) suggests.
The body might be treating other so-called gluten free grains like corn/maize, oats, and other similar proteins to gluten particularly in milk (casein), even possibly potatoes for instance like gluten and so reacting in the same way.
When all possible trigger foods which is very individual are taken out the gut heals. So the basic very strict elimination diet for 1-2 weeks to see if symptoms improve is fruit, veg, meats etc. No grains no processed foods no dairy. It might then be possible to reintroduce the gluten free foods and or dairy one at a time once the gut has healed.
Or maybe the person is highly sensitive so needs to be even more strict and not eat any grains, dairy etc. if that’s what it takes.
It’s a complex system. Recent research on the gut microbiome is really interesting like the SIBO research.
Another thing related to this is that one coeliac compared to the next might have other allergies/intolerances going on. Annals of allergy lists Coeliac Disease as a non igE mediated food hypersensitivity/allergy.
Eggs and dairy foods are also typical non-igE allergy causing foods primarily affecting the gut, in genetically predisposed individuals. Especially people with atopy family history (Eczema, asthma, dermatitis ) (I include myself in this category).
This other study showed 50% of Coeliac they tested reacted the same way to casein in milk as gluten.
ncbi.nlm.nih.gov/pmc/articl...
So 50% of Coeliacs should also be dairy free to get gut healing taking place!?
The success people have with the paleo autoimmune protocol diet and even Dr Steven Gundry’s The Plant Paradox book/work explains a lot when the research is delved into.
The NHS Drs need to catchup with the research. Gut health is complex and goes beyond Coeliac Disease and the standard gluten free diet.
I’m new to the forum. Sorry if this went on a bit...
I was about to bring up the autoimmune protocol before I reached the end of your post I took it on for thyroid issues, but iI think it can be helpful for a lot of different people
We tried whole 30 for a month after my partner was diagnosed too - it was partially a challenge to find new gluten free recipes but also to give the digestive system space. I think it was quite helpful for anyone scared of the full AIP restrictions.
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