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
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knitwitty
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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.
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!
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.
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.
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.
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.
Check your local bookstores they sometimes have an actual book that is like a diary and gives a step by step guide to tracking your food. I believe its called The Elimination Workbook or The Elimination Diet. It helped my daughter to pinpoint foods to avoid until her intestinal health improved. She has been able to slowly integrate some of these foods back into her diet over time. She is now able to eat a little bit of dairy where she could not touch it before, so time is a great healer!
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.
Thanks very much for replying , I didn't realise there might be a problem with cooking oils, we tend to use extra virgin olive oil and hope that is ok.
Also I wasn't aware that ALDI had a good range of gluten free foods as I thought they only ran a promotion for 1 week each year. I shall look into there products more closely now.
I think when he has seen a dietician he might follow a FODMAP diet to try and find out more about what he is sensitive to.
Thanks for taking the time to point out some of the pitfalls of believing that GF actually means GF.
Hi knitwitty I was diagnosed a couple of years ago. It does take a few months before you feel better. The pressure of his exams won't help. I wish him well, he is fortunate to have such a good mum.😊
Thanks for you reply and kind words, I think he will be ok with his exams as he has been told he can sit them a separate room due to his needing the bathroom frequently.
I am glad you are feeling much better it gives me some hope that he will start to improve soon, I think his biggest fear that it wasn't CD because he had been told for the last couple of years his symptoms were down to anxiety and IBS, and he couldn't see how things were going to get better.
I hope you continue to be healthy into the future, thanks again for replying.
I know I am repeating what others have posted, but really push to look at your son's vitamin B12 and folate levels, being deficient in these could really affect him, such as memory problems and tiredness. I am deficient in these and am looking at a diagnosis for celiac disease or other digestive problems. You can post his results on the pernicious anaemia/vitaminB12 deficiency site on here ( health unlocked) as a lot of docs will say all is okay when in reality he could be 'bumping along the bottom' of the range, which while studying won't help! Good luck and I hope he feels better soon.
Hi Greenbexy, Thanks for replying he has had his Bit B12 , ferritin and folate checked and they were low in range which is why I bought a good multivitamin/multimineral for him to take, he has not started as he wants to get them all re-checked via his doctor along with Vit D , which I suspect will also be low.
I have armed him with all the reasons why these need to be at least mid range or higher for someone in his condition so I am hoping his doctor ( who does seem to be on the ball) will be able to check these out for him.
When he gets his results I shall post them on the PA forum.
I have also asked him to request a full thyroid screen because again his results are in the normal range but not , in my opinion "normal", so it won't surprise me if he has high thyroid antibodies (another auto-immune condition).
I hope you are able to get a diagnosis and a clear pathway to getting well in the near future.
Firstly I'd ask - is he being referred to a specialist coeliac clinic?
If he's in shared campus accommodation he needs to ensure he doesn't use shared toasters, pans etc. Coeliac UK will send you info about keeping uncontaminated and keeping under 20 ppm. Would it help to stay in digs where the owner is a coeliac?
It does take a while to feel better and he may need more than a multivitamin to boost levels, they're really for maintenance levels. He could ask his doctor for a prescription for iron supplementation at a rate to improve ferritin and Hb. Ferrous fumerate or ferrous gluconate might be better tolerated than ferrous sulphate, so maybe ask for one of those. There are also fortified prescription cereals - particularly Juvela flakes. Maybe avoid the fibre option until his gut heals. In fact watch the amount of Psyllium husk in commercial foods which can mimic symptoms of coeliac disease.
Vitamin D is also low in coeliac disease - there are many discussions and references about it on this forum. Personally I prefer the oral spray which is more easily absorbed (by Better you). They also do a B12 spray.
A good pre and probiotic will help his digestion enormously, either via tablet form (health stores, Boots or Holland and Barratt) or by eating fermented foods.
Dairy foods are very nutritious, so avoiding dairy might not be such a good idea unless he feels he has an allergy. If he's struggling with lactose (belching and smelly 'wind'?) there are good substitutes by the Lactofree brand.
Sorry to say this but he has to keep away from beer now - it's moe of a struggle from the social aspect, it was/is for me. There are some gluten free options out there but they're not quite what they seem, with low levels of gluten. So as not to miss out on a social scene he'll have to research some of the cider brands.
Finally, some antidepressants can affect gut health and cause brain fog. Hopefully now he knows it's coeliac disease his overall health can start to improve.
It's already been said but a diagnosis at his age means he can avoid all that continued inflammation that caused many of us to suffer for decades.
He is living in a student flat and has opted for something similar next year, the main appeal has been having his own bathroom.
He does know about shared toasters etc and we have talked about not sharing tea towels and making sure everything is scrupulously clean before use.
One of his flatmates this year is also coeliac, but as he has only just been diagnosed he has not had many discussions with her about her diet it is exam season at the moment but I have suggested that he picks her brains before they finish for the summer.
He had his diagnosis via a biopsy, and his doctor said that he needed to contact the hospital to organise a follow up appointment but despite ringing and leaving messages on Mon, Tue and yesterday no one has yet got back to him so he is going back to see his GP again next week. His GP seems very good and my son knows what to ask for with regards to vitamin testing and he knows the importance of being at least mid range if not higher with his condition.
I also feel that his Thyroid function tests suggest a problem there too so he is going to request a thyroid antibody screen, if the NHS won't do that I will pay for those when he comes home in 4 weeks.
I smiled when I saw your comment about the beer because he hasn't drunk any for about 2 years, in fact he doesn't drink at all, it's really sad because he hasn't had any social life at all since he first started Uni which is why both him and myself are glad he has finally got a diagnosis as at least he can now start to rebuild his life and hopefully start to get better, and start socialising again.
He was put on an SSRI antidepressant which contributed to his stomach problems but for almost 2 years he was told that all his problems were down to anxiety and IBS, thankfully the doctor he has now was prepared to investigate further. He was relieved discover that he wasn't imagining everything, he is still on a low dose anti depressant but it's a different type, I take your point about brain fog in fact I can hardly believe he has managed to get through the year and pass his exams so far and complete his coursework and essays. I don't think I could have managed it.
On your final point I too am optimistic that, as his CD has been picked up whilst he is still fairly young he will hopefully be fully restored to good health and he is sensible and intelligent enough to realise that not eating gluten is not the end of the world just another way of living a healthy life.
I hope you are well and that my long reply has not bored the pants off you!
My daughter also suffered from anxiety and depression along with panic attacks. I have read that 90% of our seratonin, which is the 'feel good' in our bodies comes from our gut and not the head. When the gut is damaged and the villi are flattened from ingesting gluten this can cause the anxiety and depression a lot of undiagnosed Celiac people experience. Once the villi have recovered from a gluten free diet, the seratonin once again can return to normal levels. Your son will soon be feeling so much better, both physically and mentally! Take heart!
Thanks very much for both of your responses, I think keeping a food diary is a great idea, I shall pass that on to him.
I hadn't realised that having git problems could lead to reduced serotonin levels, he too has suffered with anxiety for the last couple of years and was prescribed anti depressants, the first sort actually aggravated his gut symptoms but we kept getting told that his problem was a mental one and nothing physical. Hopefully we are now on the road to recovery.
I hope that your daughter continues to be well, thanks for your help.
Glad you've had such a good response from our group.
My twopennys worth is about your son's hopefully long and enjoyable life. My diagnosis started me on a path of understanding that concluded in me realising what a dreadful diet we humans consume. Mainly the fault of profit seeking companies exploiting us and our lack of knowledge.
Your son's journey has just started and he will, I believe, look back on the last 2/3 years as a blessing, as he now has the opportunity (and importantly the motivation) to create his own bespoke diet. This should help enormously re his current symptoms, but also his overall long term health. Paradoxically many coeliacs live much healthier lives than the norm.
It is a bright future that awaits him and with such a supportive mum I'm sure he will blossom and reach his full potential.
Best of luck to you both.
Peter
PS: One small point that I don't think has been mentioned. Where to get his Vit D. You mention he doesn't go out much in case he needs the loo. I'm a believer in natural sunlight as the best source of Vit D. It's the body's normal way of absorbing it. So my advice is encourage him to get a suntan (yes I know about the advice re skin cancer. But on balance sunlight on our skin has so many benefits to our general health that I think it outweighs the cancer risk)
Thanks for your response, I can't reiterate too many times just how thankful I am that this community exists, books and online information are great but having responses from people who have experienced the same thing are invaluable in providing support for others sharing the same problem.
My son is in the far northern parts of the Uk so I am aware that he is not getting much exposure to strong enough sunlight to allow his body to produce its own VitD. When he went off to uni I supplied him with Vit D tablets and some B complex vitamins, but as he became iller I don't think he continued to take them.
I have tried to encourage him to go out of a walk each day to get some "fresh air" which he has tried to do but some days he is just too exhausted. I am hoping that as he boosts his vitamin levels and his symptoms abate that he will feel more like doing that.
Fortunately he is coming home soon for the summer and I shall be able to chivvy him along and help him to get well.
I completely agree with you regarding the food we are encouraged to eat, I think much of what is produced is largely toxic and in the rush to provide all things at all times the food industry has been guilty of growing/ producing food which is of little nutritional value and as a consequence we humans are suffering in a myriad of different ways.
Thanks again for all your support, I hope you too are continuing to be well.
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2 year old been recommended a gluten free diet
Banging my head off a brick wall.
How long before you noticed an improvement ?
4 years of suffering, possible gluten intolerance
