How long before my son starts to feel better?

Hello, my son (aged 20 ) has finally had a diagnosis of Coeliac disease confirmed.

He has been ill with severe symptoms ( mainly stomach cramps and diarrhoea ) for almost 21/2 years. He saw a consultant and his own doctor many times but it was attributed to IBS and anxiety and he was prescribed antidepressants. He had to defer university during his first year, last year, but has managed to complete his first year, this year , despite hardly attending any lectures due to the debilitating symptoms he has suffered.

He has been gluten free since his biopsy 4 weeks ago but says he is not feeling much better, I had hoped he might have started to feel better but I have tried to reassure him that because he has been unwell for so long it might take some time before he starts to feel ok again.

I really need some reassurance myself that he will start to feel better, are there any coeliacs out there who can give me some idea of when he will start to feel ok.

We are waiting to find out when he can see a dietician and have any further tests with regards to thyroid problems as his thyroid function is not optimal, and to check for any vitamin deficiencies.

His uni GP seems to be on the ball as it was him who insisted on the various test that have revealed what is wrong finally.

He has just returned to uni for his end of year exams, I just wish I could give him some hope as he has had a horrible time prior to his diagnosis and it doesn't help that he's 200 miles away.

Thanks in advance

15 Replies

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  • Sorry to hear your sons story . Mine was of a similar vain. Although I'm a quite a bit older and my symptoms were cramps , bloating , joint pain , brain fog, feeling sick, blood in stool, chronic fatigue, just generally feeling desperately ill. I didn't have diareah . Despite being aware of CD as my mom had it her symptoms were different she had diareah and weight loss. Something Ive never had. After diagnosis after having blood tests then biopsy I was told I had total atrophy of the villi my intestines had probably had years of abuse from gluten. I had a TTG level over 3000 normal is below 10 I'm told although 7,8,9 is considered high. It took me months before I started to feel better I returned to my GP after 6 months saying despite following the GF diet I'm feeling generally no better. I had loads of tests scans and further biopsy because of the bleeding. My GP discovered a dificiency im now on a high dose folic acid tablet. Now almost at my 12 month anniversary of diagnosis I still have symptoms I can't understand as I follow a GF diet religiously . I'm a lot better but no way 100% my TTG levels are coming down but still in the 100s . My daughter is 23 and a Newley qualified teacher out of uni . She has been suffering symptoms and is going to be tested in May. You need to keep on top of his doctors as for some progress is slow. Everyone's symptoms are different and I've heard people on here saying they've felt better in weeks on the GF diet. Unfortunately that doesn't happen for all. Depends how long you've been suffering and your symptoms. And how much damage has been done. Also there could be other underlying problems . For me personally it's been a long. Hard road and still not at the end. For your son I would make sure they checking for dificiency b12 iron folic acid etc as one small tablet has helped me this wasn't picked up by the hospital despite loads of bloods been taken. Good luck to your son I feel for him being far away from home and at such a crucial time of his education. It must be very hard for you. CD is sometimes a very under estimated disease and affects people differently. Good luck with your son . I hope this helps .

  • Thank you so much for replying, his current doctor seems to be much more helpful than the one he had when living at home so I am hopeful that he will cover all the bases as far as further testing goes.

    I hope your health continues to improve and that your daughter gets a swift diagnosis as I'm sure not knowing what is wrong put tremendous mental strain on our children, I know that has been the case for my son.

    Many thanks again.

  • Hi, is your son using gluten free products or just eating clean simple ingredients? I found I reacted still to some GF substitutes and am better avoiding them too..... they say it can take 6 months+ and I would really recommend going CoeliacUK and using their app to check processed foods but basically its trial and error with the other grains or, read Wheat belly total health and see why also eliminating the others might help..... oh and take a good probiotic to help the gut heal!

  • Thanks ver much for replying.

    My son had his biopsy 4 weeks ago but only got the results via his GP yesterday, he has not eaten anything containing gluten since his biopsy, he doesn't go out much as he has been fearful of needing to use the bathroom urgently so has been making his own food. He came home over Easter and I cooked all gluten free meals whilst he was here.

    I think the fact that he hadn't been diagnosed has contributed to his feelings of being ill because for 2 years + he had been told that his anxiety and stomach issues were all in his head which was why he had been given anti depressants.

    I have all the forms filled in for Coeliac UK we were just waiting for a diagnosis confirmation prior to sending them away.

    I have tried to reassure him that it may take some time to feel better as he has had such severe symptoms for such along time, I just feel so sad that his first forays into an independent life have been so awful.

    I hope you continue on your road to recovery.

    Many thanks for taking the time to reply.

  • Hi, from my recent experience it takes time to heal the gut. My brain fog started to clear within a few days but my guts were dodgy for months.

    I was convinced that everything set me off bloating etc but things are more settled.

    I followed a low fodmop diet for a few months and took probiotics. This helped and probably six to eight months of fruit, veg, meat, fish and minimal dairy and baked goods really helped.

    a year after going gf and i feel much better. It gets easier to manage.

    good luck to your son and keep up the encouragement as he's doing the right thing and it can't be easy.

    But the cleaner he can get his diet the better his gut can heal.

  • Thank you for replying, he has mentioned the FODMAP diet I think he is going to give that a go when he has spoken to his dietician.

    He has been cooking his own meals since his biopsy 4 weeks ago and he makes a good stew in his slow cooker, so I think he is eating quite healthily.

    When he was at home I cooked and made sure his food was GF.

    I will pass on your point about probiotics, I did think that a large spoonful of natural yoghurt might be helpful with each meal but I'm not sure if that would make things worse if he is avoiding dairy.

    I am glad you are feeling better, as it gives me some hope the he will feel better in the coming months, he has a few weeks left at uni and then he will be home for the summer so a bit of TLC from mum and an exploration into some good GF free meals will hopefully help.

  • Sure you know this already but need to make sure everything IS completely gluten free that he eats. Fairly easy at home so long as it's all fresh food but eating out/student cafes/takeaway is a bit of a nightmare. Some people also react to oats, even GF ones, and some people also react to dairy.

    He will be quite malnourished due to malabsorption so hopefully the dietician will help. It may take a while for him to be able to absorb nutrients properly. Make sure he's also tested for B12/ferritin/folate. B12 deficiency (and folate def as Dawn31019 says) makes you very unwell.

    With all this going on it could take a while to really feel better, but at least getting a diagnosis now, rather than in 20 years time, is very positive.

  • Hi thanks so much for replying, I am pretty sure that everything he has eaten at home is completely gluten free as I had a clean out of all my cupboards and have kept things separate when I have prepared meals he has eaten.

    He is thinking of going dairy free for a while to see if that helps.

    He is going to contact the hospital today to try and arrange an appointment with the dietician as he only found out yesterday via his GP that he has definitely got coeliac disease, the hospital were supposed to send the results of his biopsy to him but the letter never arrived.

    He has had ferritin, folate and B12 tested they were all extremely low in range but nowhere near optimum, and I have sent him back to uni with a good Multi mineral and vitamin supplement, he knows that he needs to ask for his vit D to be tested as well.

    Thanks again for responding, I hope you are well.

  • He will be low in all the key vitamins and iron. What he needs to understand is that being at the bottom of the range isn't good even though the labs and Drs will say they are ok. I feel awful if Ferritin is within range but at the bottom of it. To help improve his iron/ferritin he should take Vit C at the same time as the iron or with orange juice. This improves the absorption of the iron and makes it more gentle on the gut which is what he will need. FYI it takes a while to get ferritin levels up and a bit longer for symptoms to improve so he needs to be patient.

    I am sure he will start to feel better soon as the damage to his gut starts to heal.

    It is good that you are planning on joining Coeliac UK - they are a huge help when you are first starting to learn about this. I have called them a couple of times and they have always been very helpful and kind. The food directory and the app you can get for the phone that lets you scan barcodes for safe foods are fabulous tools.

    I hope he starts to get his energy back soon so that he can enjoy his time at uni. He's very lucky to have such great support from you

  • Thanks for responding and your very helpful reply, he is more of whizz on his phone than I am so he is quite looking forward to using the phone app!

    I hope you to continue to feel well and your response gives me hope that he will start feeling better soon.

    I am so thankful that a community like this exists where kind people like yourself and others who have responded are able to give words of advice and encouragement.

    Many thanks again.

  • If B12 is low he should be having injections. Even if low "normal", under the circumstances he should get them. However not all doctors will understand this or agree to it.

  • Sorry for not replying sooner I have been out, I will double check his B12 levels and make sure he gets the right treatment.Thanks again for your help.

  • My daughter was first diagnosed with Celiacs back in 2015. She also had a food intolerance test which showed she was intolerant to 77 foods. This was helpful in knowing which foods to limit or avoid while her gut improved. The test here in Canada is $325 but well worth it. It took a year of avoiding these foods and gluten for her to show significant improvement in her blood work. We figure she was at least 10 years undiagnosed. It is very heartbreaking to hear that your son or daughter has to deal with this on a daily basis as so much of our lives does revolve around food and the social outings. I want to tell you it does get better with time They learn what they can and cannot eat. Keeping a food diary at first is helpfu. Also remember to check toothpaste , shampoo, medications so they are gluten free. Best of luck to your family. The good news is now you have a plan of action to get your son on the road to recovery!

  • Thank you so much for replying, I am pleased that you daughter is much better now, I too am hoping my son will start to feel better soon.

    He is being referred to a dietician so we will see what they have to offer with regard to testing for food intolerances, I probably won't tell him just yet that he may have to wait 12 to start feeling better because he has had a hard enough time dealing with his symptoms away from home this year.

    He is eating very simple foods and cooking for himself so I am hoping he sees a change soon.

    I shall suggest a food diary, it's a great idea as it's very easy to forget from one day to another what you have eaten, even if it is gluten free, and it might help him to pinpoint any particular sensitivities.

    I hope you daughter continues to stay well.

    Many thanks again.

  • Are you aware GF food can still contain gluten, in very small amounts? Foods on CUK list can contain trace amounts of gluten. Might indicate what to avoid. Might be a waste of money.

    And each person has their own unique diet.

    Finding what you can eat is a life long journey. Online grocery supermarkets list ingredients, very useful. Only TESCO hassle you, and they stop after a month. Bizarrely ALDI are great because many of their foods are GF. They source outside UK, not using common UK thickeners.

    Cooking oil is a questionable foodstuff. It might be a blend of oils. Looking at other foodstuffs for reactions is a good tactic. Working out your own peculiar reaction is what needs to be done.

    Take other people's advice under caution, to help your son work out his own diet.

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