Struggling

[Shanksy89]

Hi 👋 I spoke to my doctor today as I’ve been struggling for a while with anxiety about not getting to a toilet in time. I was diagnosed coeliac in March and have been gluten free since. Symptoms have definately gotten better but I still have some bad bowel days and I never truly know when the pain and urgency is going to strike. My doctor sign posted me here to see if talking to others in similar situations might help with my anxiety? If I go anywhere I have to know where the toilets are and even if I do I still get panicky thinking ‘what if’ if I feel like I’m going to need to rush off to the loo 🤷‍♀️ I hardly socialise anymore because of the embarrassment of having to rush off. I feel panicky in work meetings in case I need to rush off. How can I get over this 😢

[cathie]

I've found that avoiding stress and living quietly with meals at regular times has helped. I tried gluten free but found I didnt need it. Stress does bring it on though so if I have to be away from toilet facilities for long - on a long journey I minimise what I eat.

[Singinglouder]

I can’t help with the anxiety (hope someone else can advise on that), but it is possible there’s still something you consume causing your symptoms. Do you keep a food diary? There may be something other than gluten causing problems, or it could be tiny amounts of gluten taking a while to kick in - both have happened to me. Years before diagnosis I realised instant coffee, especially Nescafé, was causing dreadful stomach cramps (but real coffee’s fine); after diagnosis I realised I was in trouble if I ate a salad garnish - I now only eat organic or homegrown lettuce and I’m fine. In both cases I assume it’s the chemicals involved. The gluten was harder to work out, because I discovered that if I get just a little cross contamination it’s 24 hours before it kicks in - so when someone used soy sauce cooking my lunch it was the following day before I felt the consequences. That’s where the food diary can come in useful - when I was newly diagnosed I (eventually!) realised I was missing the same meeting every Monday, because I wasn’t being strict enough about communion at church on Sunday, before I understood just how strict I had to be. The further the trigger is from the consequences, the harder it is to spot cause and effect, especially if you’re not keeping records. Hope things improve for you soon

[Shanksy89 in reply to Singinglouder]

I switched to Lacto-free milk a while back although I rarely have milk anyways. Had zero milk this week and my bowels have been bad. The only thing I can think is the fruit in some scones I’ve had 🤷‍♀️ But I’m sure I’ve had them before and been fine. I will try keeping a good diary as you’ve suggested and see if that shows anything.

[liver-bird]

Hello Shanksy, I can be caught out too and it is a worry. Something which helps is a little card that I carry with me now which says "the holder of this card has a medical condition and needs to use a toilet quickly". This was sent to me by the Bladder and Bowel Community. It is plastic and the size of a credit card and it has got me quickly into staff toilets in shops. You can get one by phoning 0800 031 5406. Hope this helps. Diane

[Shanksy89 in reply to liver-bird]

Thank you. I got one of those a couple of weeks ago. Not used it yet but hearing that it’s helped you I think I’ll be more confident to use it when I need to. I tend to rush to a supermarket or somewhere I know I don’t need the card; I guess to save any embarrassment of pulling the card out but I need to forget about that. Would be far more embarrassing to have an accident 🙈

[liver-bird]

Yes, people tend to take the card seriously because it looks official and they have never asked what condition I have. Good luck. 😊

[cranberryt]

Have you had a colonoscopy? I ended up having both celiac and colitis. Until the colitis was treated, I continued to have symptoms despite being off gluten for months. If you are still having symptoms, it’s worth exploring other reasons.

[Shanksy89 in reply to cranberryt]

No, I was diagnosed from 3 positive blood tests. I will speak to my dr again. Thank you.

[Hidden]

Two things going on here:

a) are you actually needing to rush to the loo a lot?

b) has your doctor ordered any other investigation if you are having to rush to the loo a lot?

I'm not liking the off-setting by your doctor on this one as it is not the job of complete strangers on the internet with no medical qualification to fill the gap your doctor is not. That's not a criticism to you, but one for your doctor.

I think if you are still struggling with needing the loo a lot and fast, then further investigation is required. There can be bacterial imbalances causing additional issue for coeliac, or perhaps additional foods that are causing you issue, e.g. dairy.

If there is just an anxiety that you might need the loo, then again, I'm not sure the help for that can be found via a coeliac forum as everyone experiencing coeliac differently, and some have no digestive symptoms. I think it's a case of the anxiety will lessen as your health improves, and that can take a few months once you start your gluten free diet. If the anxiety is dominating your life, then your doctor should be considering professional help for your anxiety.

Are you UK or US-based? You may have local coeliac groups that are beneficial to join also.

[Shanksy89 in reply to Hidden]

Thank you. I think it’s a bit of both to be honest. I have occasions where I need to rush to the loo so will certainly be going back to my doctor to see if they need to investigate it further. Because of this, I have anxiety when going anywhere or socialising in case I have a ‘rush to the loo’ moment. I guess the latter will improve once other investigations are done and further treatment if necessary is carried out as the ‘moments’ will reduce.

[Hidden in reply to Shanksy89]

I think your anxiety is entirely understandable, and again I'm cross with your doctor for negating that and shunting you off rather than addressing the matter. If you are having times of having to rush to loo, then things are not right yet, and the concern on this is entirely understandable so I don't think you should be hard on yourself if you are feeling anxious, and I think anyone would if they were needing to use the loo quickly. I think there is a rush to box people off as having anxiety as a standalone issue when the anxiety has a root concern/problem, and in this case it definetely does. We live in an age of mental health over-promotion with a complete negation of the things that make people anxious or depressed. It's a victim-blaming shift to offset from the organisations that fail those they are there to serve, so because your doctor doesn't know much about gut health and you are anxious about needin loo sometimes, the logic is the anxiety lies with you rather than your doctors laziness to investigate further or admit their own knowledge is limited.

It's gaslighting to suggest your anxiety is somehow irrational and independent of the fact that you actually have a physical health problem that is causing the anxiety!

As stated before, and others have stated, the healing process from coeliac takes time. You may also find it useful to check back posts on the codex level of 20mg per 1kg food weight - this is the amount of gluten that commercial gluten free foods are allowed to contain, so even though a food is labelled 'gluten free' it is allowed to contain a tiny bit of gluten which may be causing you issues. If you can, if not already, just eat foods that you have prepared yourself and avoid the commercial gluten free products to see if that makes any difference.

Also, in terms of the bacteria, H-Pylori can cause digestive issues, and that is a simple blood test. SIBO (small intestinal bacterial overgrowth) is quite common for many with coeliac, and that is a breath-test and antibiotic treatment if you have that. Many with coeliac find dairy is an issue, and also fructose/glucose, and worth looking at FodMaps also. Others end up with general inflammation that takes time to settle, or microscopic colitis or similar.

Coeliac is very confusing. I was great for years, and then it fell over the edge again and gets very confusing at times, and I think it's just other foods not agreeing, so it is a learning curve that you are on.

I'm not a big fan of Coeliac UK, but they do run local groups so it might be worth checking those out also if there is one in your area.

[Shanksy89 in reply to Hidden]

Thank you. You have been extremely helpful. I will do some homework and then revert back to my GP making sure I ask for specifics rather than relying on them to know what to do.

[Shanksy89 in reply to Hidden]

I am UK

[Narwhal10]

Hi

Welcome here. I am so sorry to read. I totally agree with Benjamin123 with the lack of knowledge, skills and attitude by your particular doctor and you being signposted here.

As others have said please do keep a food diary, symptoms and if you so wish photos. It is much easier for a health professional to assess with a visual picture.

Unfortunately, we are more likely to suffer other intolerances as the intestinal wall has been compromised.

I had intolerance testing of my hair from U.K. intolerance group (an extensive report including E numbers, grasses and metals. £20.00). Even my GP’s receptionist was very grateful when I gave her the details.

The gut wall can take up to 2 years to heal from coeliac disease - dieticians and nutritionists know this. The medical profession use the term ‘leaky gut’. Things like bone broth and collagen help repair the ‘gaps’ caused by gluten in the gut wall.

Diet wise it’s a case of reducing ‘inflammatory food’, sugars ☹️. I do make my own turmeric, ginger and cinnamon tea.

Yes, you definitely need other testing to rule out colitis and other conditions. Coeliac disease puts us more at risk of having gut dysbiosis (our gut bacteria can be out of whack). Benjamin123 has mentioned small intestinal bacterial overgrowth.

Also ask for your blood results to be printed out of your vitamin B12, ferritin, calcium and vitamin D need to have been checked.

On a practical note, I too carry a Just Can’t Wait Card (I’ve no problem flashing it and when I can I go for the really upmarket places). I also have a RADAR key. I was undiagnosed for 29 years (avoided food until the evening). Then Small Intestinal Bacterial Overgrowth and the valve between my small and large intestine (ileocaecal valve dysfunction) doesn’t work properly. My GP has no idea what to do with me, so when I ring, I’m asked what do you need.

We become experts on our own bodies and research for our own health.

Wishing you the best.

[Beautifullybroken38]

I can totally relate to this. I take Imodium sometimes if needed and prophylactically if I know I’m going to be out for a long time. I also try to minimize my food and be careful what I eat. I’m still in the learning phase with foods. It’s a struggle. It’s embarrassing to have these issues. I have had accidents several times, one of which was coming home from a trip 🤦🏼‍♀️ Sorry you are struggling but you are definitely not alone!

[Pippers]

Welcome to my world, Shanksy; I'm becoming a bit of a recluse due to being caught out too many times. I have to allow a couple of hours after eating before going out, wear a pad or pullups, plot loo locations and carry an emrgency pack of flannel, pants and plastic bag 'just in case'. Water available from loo pan. I even gave up a job due to the distance between checkout and loo.

Imagine then my anxiety level yesterday at my dear husband's funeral...