One year on, living with Crohns disease

A year ago I was preparing for my evening procedures at Ashtead hospital . Finally I had a Gastro specialist who had sent me for a endoscopy and a colonoscopy after over 30 years of various symptoms including bloating, weight loss, anaemia, joint pain, tiredness, brain fog, sickness, extreme stomach pain. Until now I had never been taken seriously by any doctor ( and I had seen plenty over the years ) About 6 years ago I started to suspect I had a wheat intolerance, after reading more it appeared I could have Coeliac disease I was extremely intolerant to gluten even the tiniest crumb which could set my symptoms off and I could continue to be unwell for days and weeks after a glutening episode. My Gastro specialist agreed that it sounded like I had classic Coeliac history and arranged for me to have the tests as a blood test could now not be used due to the lack of gluten in my diet for so long.

The preparation itself was not a nice experience but I was eager to finally get a diagnoses. All went well and I was home by late evening. I was told that Crohns disease was suspected but a follow up visit to Gatwick hospital was needed for an MRI scan. I used the weeks that followed to read everything I could on healing a leaky gut and inflamed bowels. I started by cutting all grains from my diet and removing cows milk. This wasn’t always possible but I made every effort to keep to this diet.

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I looked at FODMAP and Specific carbohydrate diet and saw from fellow bloggers how their health had improved by following these.

I have now been following as much as possible the Specific carbohydrate diet particularly focusing on no grains, no cows milk and very low sugar , no refined sugar. I am thrilled to say that I have had a dramatic improvement in my health especially the lack of bloating and my only problems have come if I have eaten out and been glutened. Even these symptoms are far less than they used to be. My stomach has never been so flat . The only area where there has been little or no improvement is with anaemia. I still suffer badly and have to take very strong iron tablets from time to time. I imagine this is because it takes many years for our bodies to heal after so many years of eating the wrong food causing a leaky gut. Due to my autoimmune diseases and leaky gut I am also intolerant to yeast, onion, garlic and more recently I haven’t been able to tolerate paprika.

I was finally sent for an MRI scan and this confirmed Crohns disease an autoimmune disease. I have had no final confirmation on whether I have Coeliac disease as my endoscopy didn’t show up any damage. After eating gluten free for many years now I was thrilled that I had no noticeable damage hopefully due to my new diet . But because of the violent symptoms I display after having gluten/ cross contamination with gluten, I won’t be adding it back to my diet anytime soon.

I have had to take this SCD in stages as its really tough. I am now trying to remove white potatoes and sweet potato from my diet, not easy ! Rice was also incredibly difficult to live without. I am not a huge fan of cauliflower which is the go to alternative. I’m just taking it a week at a time. I am so thankful for ground almonds  and coconut flour and for unsweetend almond milk. I have also stopped drinking any alcohol except the very odd special occasion. It all sounds like a very depressing way to live but when the only other option is medication, to me its a no brainer. I hate taking anything even paracetomol, Every time I visit my Gastro specialist he offers me medication. Which seems strange to me as I have no symptoms! He is definitely struggling to believe that my diet is helping me but I am determined to show him that for someone like me with low level symptoms of Crohns disease It is possible to control and possibly heal myself using healthy fresh food. Our home is completely gluten free and since we made this change I have not been ill eating at home. Even the Dog eats grain free, and she has never looked healthier!

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I have also found that eating high healthy fat ( coconut oil, avocado,  butter, cheese, etc ) and low carbohydrates keeps me feeling full for longer. Breakfast every day always consists of 2 free range eggs with either bacon , salmon or I make a veggie omelette using spinach etc. Grain free pancakes make a nice alternative too, or just nuts granola.

Lunch tends to be homemade soup, salads with cheese, ham, chicken etc or a grain free wrap with delicious fillings, and a piece of whole fruit.

Evening meal is good quality local meat or fish/seafood  with lots of different veggies and I tend to now use butternut squash instead of potato.

I have the odd cube of very dark gluten free chocolate or some cubes of cheese, fruit or nuts to snack on.

I tend to drink still or sparkling water and the occasional cup of tea with unsweetend almond milk or camomile tea.

If you are interested in helping your symptoms check out @anaussiewithcrohns and @deliciouslyella both have used a healthy diet to improve their health.

My hope is that one day in the future I may be able to reintroduce some foods back into my diet , I am being realistic and know after over 30 years of symptoms this probably won’t be any time soon.

My family have been my biggest supporters. Living gluten free at home and eating out only at places where Mum can eat safely is a big ask. I am very fortunate that my family are grown up as I can see how difficult this could be with young children. My faith has also kept me strong and knowing that I am not dealing with this disease alone is a great comfort to me.

 

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This is still very much a learning journey. Baking is now far more challenging, every time I successfully make a grain free alternative to a favourite bake I am thrilled. I hope to continue to share these recipes with you. More recipe books are appearing on the shelves of book shops with grain free, low sugar recipes and I will continue to seek out the best to share with you.

Fellow tweeter @gfcuppatea recently said to me ” nothing tastes as good as Good Health”  and this is so very true I’m going to try and remember this when I’m craving something yummy I know will affect my health adversely.

If you are travelling on the same autoimmune disease journey as me  I would love to hear from you. Have you improved your health by changing your diet?

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7 thoughts on “One year on, living with Crohns disease

  1. Hi! Im so glad that diet seems to be working well for you, its a much better option than medication I think. I have coeliac disease and every couple of months I get bad stomach pain back pain nausea mouth ulcers fatigue bloating, starts really bad and over a couple of weeks gets gradually better. I often put it down to being glutened but im sure when I do get glutened that my symptoms are slightly different usually a really bad headache. I’ve started looking at Crohns disease and I think I have some of the symptoms but I wouldn’t say its extreme. I have been to the doctors before multiple times with this and ive been tested for kidney problems thyroid and other things and it always comes back fine and they say its IBS. I just wondered if you had any tips or info about what to ask the doctor for?? I don’t know what to do! Xxx

    • I think my Crohns is very mild ( not that I have done too much research it’s all to scary ) I have symptoms more common to Coeliavs disease and wonder if Coeliacs has caused the Crohns after being left such a long time. It’s always worth mentioning your worries to a dr I searched for ages to find a GP who would listen . Have you had a colonoscopy ?

      • No I haven’t, I think that would be the next step. I should probably go to the doctor, I just seem to be there so often I hate it!! I will also look into my diet, I eat gluten free but I think there must be other things affecting me.

  2. Congrats on one year! That’s a big milestone 🙂 Changing your diet is harder… But so many less side effects. They still don’t know what’s wrong with me, but I feel so much better when I stick to very low carb/sugar or none at all…

  3. Thank you for sharing your inspiring story. Our son has been following SCD/GAPS for a year now, And we are so proud of him. Our home is free of all non compliant foods, but my partner and I do have a few treats when out! It is wise to exclude things slowly. We crave pumpkin now and don’t even miss the White or sweet potatoe. Also, I have become more capable shopping and cooking all round. After all, we are changing a lifetime of habits! It no longer seems a burden to make broth, etc. Thanks for the opportunity to share and warm wishes.

  4. What a great post! Reading it made me wonder whether I should go back to the GP and discuss my problems but I am so used to the reaction that I have given up years ago. As you know I am about to embark on the GAPS or SCD diet and have already given up grains, sugar (all including fruit) and carbs…so hopefully the next step won’t be too bad. Don’t know how long I can keep it up though!!! Thanks for your great recipes…they have inspired me. Especially the fish fingers!

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