type one fractory coeliac disease

[Dona]

hiya been told ive type one refractory coeliac disease (2 years), was put on mercapturprine which is a chemo drug, am trying to loss weight but I cant, because of the drug it makes me feel sick, nausea, chronic fatigue and other symptoms, I only eat 1 meal a day and I keep going off the diet, am suffering from depression, ive been told that i have total villi athropy marsh garde 3b and that the meds have not worked, it would be nice to chat to someone who has the same condtion as i feel very lonely

[callistodevi]

Hi Dona, I don't have RCD myself, but was really sorry to read your post and hear how depressed you are, you must fee rotten. Have had a 'google' and Coeliac UK have an info page here coeliac.org.uk/coeliac-dise..., but I'm sure you've already investigated it. It does say that it is important to remain gluten free though, otherwise the condition will get worse. You say you are trying to lose weight (could be a typo) but I would say this was the least of your problems if so, as you need all the good nourishment you can get, particularly as you are only managing one meal a day.

I would say, Dona, try not to let the illness define you. When you eat, make the food as nutritious as you can (refer to your dietician, there may be other foods you need to be careful with ie dairy or soya). It's hard, I know, but think about what you enjoy doing and make a point of focussing your energy on it, not just your diagnosis. Could be you're interested in nature, art, sewing, music, crafts - whatever, find space for it in your life, something to bring you joy. What about finding a local yoga class, or meditation, or other alternative therapies, if that's you thing. Excuse me if I'm off the mark here, as I truly don't know how difficult things are for you but I really do wish you the best whilst living with with your condition. Hopefully someone will post here with a more first hand experience of RCD.

[poing]

I don't have RCD either... I have had a glimpse of what it is like to be really unwell, to totally loose your appetite when your digestive system just says "no" and it all seems to be going from bad to worse. Luckily, things turned around fairly quickly for me, but I hate to think what could have happened. You really have my sympathies.

I hope you don't mind me asking, are you really trying to lose weight? If you are putting on weight despite not eating very much, then it sounds like your body is in "starvation mode", and has slowed down your metabolism too much. Restricting the amount that you eat even further will just make you more unwell. I've seen this happen to a friend of mine, and although it took a long while to work out how to fix it, she was able to reverse things -- crucially she had to eat more not less. Sometimes it isn't just about calories.

I think you need to some help planning your meals to make sure you are getting enough calories and nutrients -- your body can't heal unless you do. You have to give your body the raw materials (proteins, minerals, vitamins) that it needs to regrow the damaged tissues, and those raw materials come from food.

Have you been checked for nutrient deficiencies? I had a bunch of those developing and I felt so much better when they were sorted out. Some deficiencies cause depression, and that makes everything much harder to cope with.

Have you been checked for thyroid disease? That can cause weight gain in spite of everything else. Thyroid disease is slightly more common in people with coeliac disease.

Maybe your doctors have done all this already, but I thought it was worth asking all the same. Don't give up hope!

[Regalbirdy]

Hi Dona,

I don't have RCD either (I'm a regular coeliac) but I can tell you from personal experience that having a vitamin D deficiency and a B12 deficiency at the same time can make you pretty fatigued.

I would seriously push your GP for blood tests if you haven't had any recently. Vitamin D is not normally a routine blood test, so you would have to ask this specifically. It is common for coeliacs to be Vit D deficient (and btw being deficient just in this vitamin alone is known to cause chronic fatigue!).

A friend told me recently that if necessary a Vit D test can be done privately for about £25, if you feel you want to do this instead.

I would also push your GP for blood tests for Iron and folic acid anaemia, which can be much more common in coeliac's especially those who are newly diagnosed or those who don't keep to the GF diet. They are other causes of fatigue. My understanding is that being folic acid deficient can cause a decrease in appetite as well.

I have also got depression and that does unfortunately also add to my fatigue symptoms. Again speaking from experience, I am guessing you don't have the energy to cook that often. Worth it though if you can! I resort to making things in batches when I feel up to it and freezing them - so on bad days I am more likely to have something half decent easily available.

On really bad days I find a tin of Amy's soup goes down really well. They're not cheap but they are handy and I think they taste pretty good.

You absolutely must stay on the GF diet though (but deep down you know this already!!), because not doing so will also make you feel even worse. It is going to affect what nutrients you can absorb from your diet and screw your system up even more in the long run.

So consider making an appointment to see your GP asap. You may have to negotiate a little with them to get what you need because they are not specialists in CD/RCD, but I promise you that it's worth it in the end.

Good luck and don't give up trying to get well just yet!

R.B

[Lynilou]

Hi Dona,

I have been diagnosed with coeliac ( not RCD) for almost eight years, however I have recently had a bad 'flare up' of coeliac symptoms, resulting in acid reflux, and I have had to take my diet right back to basics. I had my thyroid removed 11 years ago and I was having symptoms back then so I have been coeliac a long time. Apparently the diet for coeliacs used to be known as the banana diet as that was all that was known to be safe and available, - so a lady told me at a support group meeting-. Hence I am pretty much living on bananas at the moment! I have a yummy smoothie for breakfast, made from bananas, almond milk ( I can't tolerate dairy either) blueberries and a couple of other super foods. That gets me through to lunch, which is Green salad and Beetroot lol lots of water too as I am off tea and coffee entirely. Dinner is chicken and steamed vegetables! Was getting boring but I am feeling so much better, and have much more energy! So I'm sticking with it and am using herbs to enhance the taste.

I can adapt pretty much any normal recipe for fresh meat and veg and make it gluten free and love using my slow cooker so I have cooked lots of recipes for all of my family who say they like my food more than normal!

Thinking back though to my first year I guess I was quite depressed, I remember crying over a jacket potato at lunch when everyone else had gluten choices. It gets better, you heal slowly and learn what you can eat, I now love my food again, shame I'm off so much too at the moment!

[nickyr]

Hi Dona

You are not alone....I also have RCD (type 1 I 'hope', currently having some very expensive tests to check). I'm so sorry to hear you are having such a horrible time, its difficult enough with CD let alone RCD. I have done loads of research into CD and RCD so if it helps I'll share some of that and my experience as I am 'challenging' my diagnosis and what RCD is and maybe there is something here for you....and maybe not but I hope it's useful.

I was diagnosed with CD 3.5 years ago after a bout of gastroenteritis from overseas travel. I got worse not better on the GFD (obsessively strict) kept getting sent to the dieticians as they didn't believe I wasn't eating gluten. After about 9 months of this and me continuing to get worse, at one point I was on the loo for 2-3 hours every night and had lost over a stone...my consultant said I had RCD. I wasn't convinced and did my research and came across FODMAPS, long story short I realised that my super healthy GF diet was full of FODMAP veg, fruit and legumes and when I put myself on a strict no FODMAP diet my symptoms reduced immediately and were pretty much gone within 3 months and I put on weight. I was delighted, thought I'd cracked it and then had my 2nd biospy, still villous atrophy Bizarely in my case I also had....and have a high tTg, in fact in Jan this year it was twice the level of my diagnosis at 280! Assuming I must be hypersensitive I cut out everything I didn't make myself from scratch but still nothing improved.....more biospises, still no improvement and so RDC reconfirmed. last year i was offered the steriod/immunosuppressant treatment which I declined because I am not symptomatic.

There are a number of research papers out there now and the lastest review of RCD says that there is no conclusive evidence that any of the treatment options work AND that while the drug therapy is often effective in alleviating symptoms it is not always/often effective at improving histology. In my case my big question is why the tTg, I believe that as that is so high it explains the villous atrophy...question is how so high. Some of my reading suggested that the protein fraction in other non gluten grains, especially corn could cause an immune response in some very sensitive coeliacs so I cut that out along with all grains for a year but that didn't help. Over the last 6 months I have come across another very interesting theory emerging from the US that if it is right would be the closest I've come to finding an explantion - cross reactivity - there is some research now that suggests that a small number of diverse foods can mimic gluten (it's all about amino acid sequences being the same) and so the body thinks it is eating guten. Look up Chris Kresser on this and the blog by Paleo Mom if this sounds worth looking at for you too. Regenerus Labs in the UK are about to start testing for reaction to these foods - supposedly this month though they keep delaying. Dietwise check out the Specific Carbohydrate Diet (SCD), designed for coeliacs and those with IBD....I tried to do that + FODMAPs, quite tricky and restrictive....author claims most non-responder CDs are healed within a year on the diet....maybe it will work for you.

The other interesting area I have looked into is parasites, especially giardia, they cause villous atrophy and after my overseas travel I believe there might be some involvement, doesn't explain tTg but I did take a herbal treatment course for giardia and I felt so much better and my tTg went down to the lowest it's ever been - 300 - 20 in 3 months! Haven't found an explanation for that but it happened...this is all not as 'simple' as it seems, the body is not simple! The more I dig the more complex it is....I'm sure become a bit of a pain for my consultant as I keep challenging things and asking difficult questions.

So my questions for you - who are you seeing (Prof Sanders or Ciciltira?) how is your tTG? are you getting regular bloods done - as others have mentioned B12, D, ferratin in particular. Ask for CRP and ESR to see how your inflammation is doing. For the first 6 months I had critically low levels but have managed to get and keep them all in the reference range now despite extensive villous atrophy - i can't tell you how much better I feel now for that. Hope you are taking a good multi vit/mineral and look into L glutamine for gut healing support (research on this being helpful). I would also suggest trying transdermal magnesium supplement - likely to be low and better absorbed through skin. Better You do an excellent product - magnesium essential for energy amongst many other things.

Better leave it there but happy to 'talk' more if any of this is helpful. Keep your chin up and don't give up - while I respect the NHS / consultants etc its your body, listen to what you think is happening and research things for yourself if you can - RCD is very under-researched, no one really knows very much yet and many cases are misdiagnosed.

Take care

Nicky

[FionaGFG Administrator]

Hi Dona,

It's understandable that you are feeling low. Coeliac can be hard to deal with and RCD is harder still.

Have you spoken to your Dr about how you feel and whether there are alternative drugs with less side effects?

Some general tips that help you during this lifestyle change are:

- meditation, it can really help the mind & body try the Headspace app on an app or their website getsomeheadspace.com/

- pilates can help strengthen your body and still your mind so you benefit two ways. Sounds odd but it can help relax a stressed stomach as well. Always worth trying to find a class or 1:1 teacher that is well qualified

- although you don't feel hungry do make sure you are eating well try healthy smoothies, Quinoa for protein, Pinterest for inspirational recipes. Without the right fuel you will feel bad. And of course with RCD you'll be absorbing less than others so you should consider a good GF multi vitamin and regular checks at the doctors

Doctor:

- have you also asked your Dr to exclude Pernicious Anemia & Thyroid problems as any of these can cause depression through the disease.

Do keep in touch and let us know how you are getting on.

Fiona