EP.300/ REPLAY: Endo Belly? A Plea to Get Tested for Coeliac Disease - and Six Surprising Symptoms
Today on the show I am talking about one of the possible root causes of your endo belly – coeliac disease. Now, before you turn this podcast off because you think you don’t react to gluten, I am literally begging you to listen.
I have noticed a trend in my clients to dismiss coeliac disease as a possibility, because they don’t have immediate reactions after gluten. But – here’s the thing, the reactions from gluten are not always obvious and they don’t always happen straight away.
So, if you’re bloated all the time, tired all the time, maybe you have diarrhoea regularly or gas, or constipation, or maybe you don’t have any gut symptoms at all – but you have brain fog, fatigue and achy joints, then it may be down to coeliac disease.
And these symptoms don’t just have to occur after straight after gluten. In fact, according to the Food Allergy Research and Resource Program at the University of Nebraska-Lincoln, coeliac disease is a “delayed hypersensitivity reaction where symptoms develop 48-72 hours after ingestion” of gluten.(1) Now yes, some people with coeliac disease will experience symptoms soon after eating gluten, but for others, it’s a couple of hours or even longer, as demonstrated here. So just because your symptoms do not show up straight after gluten, that doesn’t mean you do not have coeliac disease and in fact, if you tend to eat gluten daily, and you tend to feel unwell daily – maybe you have chronic fatigue, for example - then this could be the result of that delayed reaction, just blurring into the next, because there’s little time between each serving.
Additionally, the NHS states that symptoms can actually be mild and can come and go, so the signs of coeliac disease may be inconsistent(2). Your reactions to gluten do not have to be severe for you to have coeliac disease, for example, my brother was hospitalised with severe abdominal cramping and vomiting when he was diagnosed, whereas my sister literally said she was just “fed up of feeling nauseas”.
And here’s why it’s important to get checked.
In the UK, only 30% of people with coeliac disease have been diagnosed(3), and it is estimated that 500,000 people are walking around with undiagnosed coeliac disease.(4)
In America, 83% of people with coeliac disease are undiagnosed.(5)
And it’s not rare either. In the UK, 1 in 100 people have coeliac disease (3) and in the USA, 1 in 133 people have coeliac disease.(5) And as you can see from these stats, the majority of them don’t know they have it.
And if you have endometriosis, the chances of having coeliac disease is higher.
Research has identified a strong association between endometriosis and coeliac disease. Coeliac disease patients were found to be almost twice as likely to develop endo in research(6) and studies have found that people with endometriosis are significantly more likely to develop coeliac disease.(7)
To add to that, coeliac disease is a co-condition of small intestine bacterial overgrowth(8), which is a condition where normal bacteria which should be found in the large intestine, are growing in the small intestine. And SIBO is at present, estimated to affect up to 80% of people with endometriosis(9) and is a root cause of the endo belly, because the signature SIBO symptom is bloating. So, if you have endometriosis and SIBO, this is a really strong indicator that you should get tested.
Additionally, in a study of over 200 women with endo, 75% experienced a reduction in symptoms after eliminating gluten for 12 months.(10) That doesn’t mean you have to be as strict as someone with coeliac disease if you don’t have it, as people with coeliac disease have to avoid cross-contamination, so literally they have to have separate food prep areas, chopping boards, etc. But not eating gluten containing foods may make a significant difference to life with endo.
Now, clearly, this isn’t for everyone. For some people in this study, it didn’t help, and we have to be careful when we talk about eliminating foods, as it can be triggering and cause issues with disordered eating, so I am not saying to just go and cut out gluten today. In fact, I actually advise against that – at least until you’ve been tested for coeliac disease! Then if you don’t have it, I advise you work with someone to identify if gluten is a problem for your endo personally or take one of my courses where I teach you how to do that yourself, and as you guys know, The Endo Belly Course is currently open for enrolment now.
So now you know the prevalence rates of coeliac disease, I thought I’d take you through some of the signs. Now, gut symptoms are often common symptoms, but some people don’t have these at all and in fact, they have other symptoms that may be seemingly random or connected to endometriosis, so they dismiss the possibility of it being coeliac disease. So today, I want to take you through some surprising signs of coeliac disease to look out for:
1) Rashes. Number one is rashes and specifically, a rash called dermatitis herpetiformis. My brother developed this, but my sister didn’t, and the rash turned up probably a year or more before his gut issues arrived and it’s actually common for people who have the rash, to not have the gut symptoms (though this isn’t always the case). The rash looks like blisters on the skin, and is itchy, red, and tends to occur on the elbows (which is where my brother had it), knees and glutes. It is only a rash that appears in coeliac disease patients and is caused by gluten, it is not a rash anyone could get and is not caused by herpes, however, it does look like the herpes virus! Of course, if you have a rash like this and you have some of the other symptoms of coeliac disease, it’s worth testing for it, but you can also get a biopsy to confirm whether this is dermatitis herpetiformis.(11)
2) Number two is dental problems. Now this tends to occur if the coeliac disease developed as a child (and just be mindful that coeliac disease can develop at any age!) due to the body being unable to absorb enough nutrients due to the damage in the intestines and from my understand, also as a result of the immune reactions. Dental problems can occur as issues with the enamel and can look like discolouration, patches on the teeth, translucent areas, grooves on the teeth and potentially increased cavities. Additionally, the growth of adult teeth can be delayed too.(12)
3) Number three is mouth ulcers(13), and these would be on the side of the mouth, on the cheeks and tongue, not on the lips – so we’re not talking about cold sores. These won’t occur in everyone, but if they do, they’ll usually be recurring and you may have a few at one time. Again, this is thought to be a result of the nutrient deficiencies and immune response to the gluten.
4) Number four is anaemia, either b12 or iron deficiency induced anaemia or both(14). And this is tricky, because this is also a sign of SIBO!(15) So again, it’s easy to dismiss coeliac disease here.
B12 and iron deficiency anaemia will cause symptoms like tiredness, dizziness, shortness of breath, heart palpitations, numbness in the hands and feet, mouth ulcers, brain fog and irritability to name a few.(16,17) I’ve linked to the NHS page for symptoms in the show notes.
You can fairly easily get tested for these through your GP or online testing sites like Thriva in the UK, and I’ve linked to a few of them(18). If your levels are low but not deficient, it’s still worth ruling out coeliac disease, because they have to get low to get deficient and if you’ve only just recently developed coeliac disease, it may take some time for your levels to drop. And on top of that, if you have the presence of gut problems, endo belly or any of the other symptoms I’ve listed, and you have low levels of iron and B12, it’s safer just to rule it out.
5) Number five is infertility or reoccurring miscarriages, and I think this is an important one to raise because we often dismiss fertility problems as a symptom of endometriosis.
Now if coeliac disease is diagnosed and treated (as in, a person sticks to a strictly gluten free diet, which is the only form of treatment there is) then fertility rates return to normal and are equal to someone without coeliac disease.
The problem is when it’s left undiagnosed, and in fact, the guidance in the UK is that people who have recurring miscarriages or fertility struggles should be tested. I mean I think they should be tested as soon as the difficulty begins, to save people all that heartache, but I guess it costs the NHS less this way.
There are numerous reasons why coeliac disease will affect fertility, from disrupting hormones, causing inflammation in the body, nutrient deficiencies and so on. But the bottom line is, the only way to treat it would be with a diagnosis and an adherence to a gluten free diet.(19)
6) Number six is brain fog(20). Coeliac disease patients often report brain fog and fatigue and research confirming these reports, with MRI scans showing brain changes and damage in people with coeliac disease. This brain fog may be accompanied by memory loss, headaches, and even balance or speech problems.
One small study found a significant improvement in patients with CD and cognitive impairment after a year on a strict gluten free diet(21), so there is definitely hope if this is a symptom you have and you’re diagnosed!
And I thought I’d raise this one because so many of us report brain fog with endometriosis, and whilst there are many root causes behind this (in fact, I have a whole episode on them) often we just dismiss it as something we have to live with.
So those are a few symptoms that you may not suspect would be behind coeliac disease – and these can all occur with or without gut problems and the endo belly.
Some other signs to look out for include the development of autoimmune conditions like hashimoto's thyroiditis, type 1 diabetes (which my brother developed) and osteoporosis(22).
So now let’s move onto testing. To accurately test for coeliac disease, you must be eating gluten daily, at least twice a day, for six weeks(23). This is because the immune system will create antibodies against gluten and that’s what’s being measured. If you’re not eating gluten at all or not regularly, you’ll get a false negative test, even if you have the disease. So, if my brother tested today, he would come up as negative, because he hasn’t eaten gluten for several years.
Once you’ve done the blood test, you’ll then also be sent for a biopsy.
If you’re still not sure whether it’s worth getting tested, I’ve linked to an online assessment in the show notes, which will literally create a letter to take to the doctor, if it advises you to get tested, based on your symptoms.(24)
So that’s it! If you have the endo belly, full stop, I advise you to get tested. And if any of these other symptoms sound familiar, I advise you to get tested too!
Left undiagnosed, coeliac disease can cause serious health problems and increase your risk of multiple conditions and chronic diseases(24), and we’ve never lived in a better time to be gluten free, so even though it might be a hassle to get tested, it’ll be worth it in the long run.
I’ve also linked to some gluten free courses and cookbooks in the show notes.(25)
Show Notes
1. https://farrp.unl.edu/resources/gi-fas/celiac-disease
2. https://www.nhs.uk/conditions/coeliac-disease/symptoms/
3. https://www.coeliac.org.uk/information-and-support/coeliac-disease/coeliac-disease-faqs/
5. https://www.beyondceliac.org/fast-facts-about-celiac-disease-infographic/
6. https://pubmed.ncbi.nlm.nih.gov/21840904/
7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6601386/
8. https://www.siboinfo.com/associated-diseases.html
9. https://pubmed.ncbi.nlm.nih.gov/9660426/
10. https://pubmed.ncbi.nlm.nih.gov/23334113/
11. https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/
12. https://celiac.org/about-celiac-disease/related-conditions/oral-health/, https://jcda.ca/article/b39
13. https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/
15. https://www.siboinfo.com/overview1.html
16. https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/
17. https://www.nhs.uk/conditions/iron-deficiency-anaemia/
18. https://thriva.co, https://valahealth.com, https://www.letsgetchecked.com
21. https://celiac.org/about-the-foundation/featured-news/2014/07/brainfog/
24. https://www.nhs.uk/conditions/coeliac-disease/complications/
25. https://www.penguinrandomhouse.com/books/665647/cannelle-et-vanille-bakes-simple-by-aran-goyoaga/, https://www.arangoyoaga.com/on-demand-videos,https://www.learningwithexperts.com/foodanddrink/courses/river-cottage-gluten-free?ref=naomidevlin, https://gluten-free-baking-school.thinkific.com/courses/gluten-free-sourdough-bread, https://gluten-free-baking-school.thinkific.com/courses/enriched-dough, https://gluten-free-baking-school.thinkific.com/courses/everyday-gluten-free, https://gluten-free-baking-school.thinkific.com/courses/bao-noodles-and-dumplings, https://sweetlaurel.com
Free resources:
This podcast!
Ways to work with me:
This EndoLife, It Starts with Breakfast digital cookbook
Masterclasses in endo nutrition, surgery prep and recovery and pain relief
Live and Thrive with Endo: The Foundations DIY course
One to one coaching info and application
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Produced by Chris Robson