Gluten Free Guerrillas
8,671 members3,559 posts

Just diagnosed

After 19 days in hospital we have today been told that Hubby has Coeliac Disease and Lymphcytic colitis. Over the past few years he has had endoscopies, colonoscopies, sigmoidoscopy , CT scans and SeCHAT. It was only because he was admitted to hospital with very low BP and diarrhoea that they looked more closely at him. Anyway the recent biopsies taken found the problems. Apparently they can only be seen under a microscope. Now to start his recovery, his body isn’t absorbing minerals etc so that needs to be corrected before he is allowed home. Only one down side is that he is in an isolation room and hardly sees anybody apart from my daily visits. I have an appointment with the consultant tomorrow and hope to get a physio to see him as he has hardly moved since being admitted. We have joined the Coeliac UK website as well as joining this forum.

15 Replies
oldestnewest

Good luck to the both of you. Thank goodness you finally have a diagnosis. Unfortunately it can still take years to get one.

Hope he can come home soon.

It does take time for the body to recover and it seems to be a good idea for most people to avoid the ready-made gluten free foods to start with, especially if they contain additives such as emulsifiers.

Reply

Penel, thank you for your reply. In a way we are quite lucky as when we retired 10 years ago we said no more processed foods. We based our diet around meat, veggie, fish and fruit. However, looking at the website things like soy sauce are out. I suppose it will take time to adjust our menus, but we will get there.

2 likes
Reply

Hi - sorry to read about your Hubby - but also relieved for you both that he does not have something more serious. I had Gut TB when I was 27 - followed by Crohns - and many more surgical interventions over the years. I am now almost 72 and much fitter than when I was younger.

B12 is absorbed in the Terminal Ileum - where the large bowel meets the small. Here the B12 is metabolised and sent back to the liver. I had the Terminal Ileum removed at 27 and was not told about the B12 issue. I had always supplemented a B Complex which gave the impression the B12 result was fine on paper - BUT ! - it was not and I suffer the consequences. Even though I had Gastro appointments every six months it was never mentioned - sadly. A B12 result below 500 can result in neurological symptoms - see link below.

b12deficiency.info/signs-an...

Gluten is everywhere - even in supplements ... but reading labels soon becomes the norm.

Wishing hubby well soon !

Reply

Thank you Marz, I have it on my list to discuss vitamins with consultant. Reading about B12 I am sure hubbies levels were low. He has been to doctors many times about loss of taste and smell and he was just given folic acid for a few months. Nothing changed. Hopefully the consultant will recommend and advise on what he should be taking. I have cleared out my food cupboard but as you say you need to read all labels. Just looking forward to having him back home.

Reply

Sadly docs do not study Diet and Nutrition at Med School - or if they do most of them seem to have missed the lecture :-) I have been on the Thyroid UK Forum here on HU and also the Pernicious Anaemia forum - which causes B12 issues. It is horrifying to read just how little Docs know - and consultants very little too. They may test B12 and declare you 'normal ' if in range - but it is where you are in range that is so key. Ferritin and Folate are good around mid-range - B12 over 500 and VitD over 100. This is information learned from being on Thyroid UK for almost 7 years and learning good things from patient to patient tips. This is really what Fora are all about - sharing experiences and knowledge. Taking Folic Acid when B12 is LOW - only masks B12 issues. Relying on Docs to know about chronic illnesses is a tall order - their hands are tied. Western medicine is a business ...

Always insist on copies of all results with ranges so you are able to monitor progress and to check what has been missed. They are legally yours. All surgeries should now have on-line access to results and records - so worth asking.

Did you manage to look at the link I posted above - about B12 ? Can also post the Guidelines your GP should have read if needed.

Reply

Marz, thank you for your informative reply. Yes, I did look at the link and have some B12 being delivered tomorrow. I am going to take the hospital discharge letter round to doctors tomorrow as they need to do a blood test in a few weeks time.

We order our medication on line but have never had access to any other areas. I have already challenged the surgery and had a letter from the practice manager apologising, perhaps I will wait a few weeks before requesting access to our records and results. It should be automatic I know but the fight has been knocked out of me at the moment,

1 like
Reply

Once you start taking B12 - further testing will be skewed & Doc will declare you fine. B12 is needed in the cells and all the B12 in the blood does not reach the cells ! Hope all goes well for you both. 😊

Reply

Meridian do a gluten free tamari soya sauce.😊

1 like
Reply

Really feeling for you and your husband Basmack. It must have been very frightening having him admitted in such a bad way and only now being able to find the cause. It makes one wonder how many chronically ill people cannot tolerate wheat! Take it slow and steady and yes, I agree he does need to move around with a physio as that can really help in recovery by removing toxins and pumping the body back in to good health. Lymphatic drainage may also help in his case.

Reply

WobblyCaroline, I have just googled Lymphatic Drainage and cannot find anywhere close to where we live. I will do more research later. Will update my post once I have seen the consultant.

Reply

Hi Bazmack, welcome to the forum.

I'm so pleased you have finally had a diagnosis as I know how difficult , and unsettling, it can be to know there's something wrong but not know what it is. I don't know about the L. Colitis, but I see there are societies, as there are for coeliac, so hopefully you will be able to move forward on both now you know what you're dealing with.

I was diagnosed coeliac in 1996. It's much easier to find things to eat now than back then, and awareness is growing, so don't worry, you can adjust. If you've already moved away from ready mades to home cooking you're well on your way! In 1996 too you never saw anything gluten free if you ate out, but now even small cafes usually have cake. On the downside, in many places what you are allowed to have on the NHS on prescription for bread, flour etc is being cut back, but to be honest it was getting marginal on cost since you pay for prescriptions, and so many supermarkets offer their own brands of GF stuff and keep a good range of brands. With regard specifically to soy sauce there is a gluten free version widely available called " Tamari " ...so you can still cook Chinese food at home. Tesco also do nice Free From sweet and sour chicken balls and scampi in the freezer section. lol There are also some companies who send things in the post...'Baked to Taste' is one of my favourites as I love their curried vegetable 'cornish' pasties.

Hope your husband responds quickly to treatment and that you get him home soon. Good luck! x

1 like
Reply

Pleased you have results at last. It took me 18 years to finally get an answer. I had all the tests just like hubby. I took pills for IBS for all that time before i was sorted. I have Osteoporosis as a results. I was very ill for years.

1 like
Reply

That's a great diagnosis! Sounds like he was very ill. There are many terrible diseases that can cause these symptoms, but thankfully coeliac disease can be easily managed with a change in diet.

1 like
Reply

I’ve got CD and lymphocytic colitis too. My gastroenterologist says the colitis might burn itself out after a couple of years, though I think I’ve had it for a lot longer than my diagnosis from last year. I’ve lost a lot of weight from it. My dietician thinks I have bile acid malabsorption (if I eat more than 30 grammes of fat per day I get a lot of abdominal pain, indigestion, sulphurous belches, wind and diahorrea), but my gp won’t agree to a SeChat scan. I’ve found that lymphocytic colitis isn’t much heard of or understood either, and the response from medics can be to “just take Imodium” to manage. In my experience (via me contacting them) Coeliac uk only appears to be interested in straightforward coeliac disease, and not the other related diseases that go with it.

I’ve been prescribed budenoside (steroid) to help calm things down, calcium/vitamins A & D, gaviscon.

He has my sympathy but at least a diagnosis has been made, and that’s the start of beginning to manage. I was told for over 10 years that I had a mental health problem/IBS/it was my age, before I got an answer last year

Good luck!

1 like
Reply

Hello again

Have just been reading an article le about kefir, as I have just started to try it. One suggestion is that it can improve conditions such as colitis, as well as improving gut health generally. It might be worth you having a look at it. I have found that it has improved my tolerance of dairy products (lactose) much to my surprise.

1 like
Reply

You may also like...