non responsive or refactory coeliac’s disease

[RJane83]

hi

Was wondering if anyone else has had similar issues ? Sorry it’s a long one

My Nan, Mother and Brother all have coeliacs and have been diagnosed for many years my brother also has colitis.

I’ve only been diagnosed for 4years now, but had been tested regularly due to hereditary link.

A gluten free diet has not helped me and also cut out lactose 6 months after initial diagnosis as was still having such bad stomach symptoms- I’ve had to give up my dental nursing job which I loved 2 years ago as had urgency issues and blood present . Had a colonoscopy which came back inconclusive and was due to have other tests start but suffered multiple unprovoked pulmonary embolisms in both lungs- it’s taken about 18 months to recover from that and have tests start back up again as symptoms have gotten much worse - I get cramp pains in my stomach and back passage that can last minutes to days, runny tummy sometimes so bad I can’t even hold in plain rice, hair loss, ulcers in mouth, extreme exhaustion, rashes on my neck and torso, sore running eyes, achy hands and joints, blood or mucus present with stools and gone into perimenopause early due to autoimmune.

I saw a colorectal consultant this week that said I will be referred to coeliac specialist as no signs of colitis or anything sinister on colonoscopy or ct scan - she said I will refer you back to your specialist- then said oh you should of seen him 4-3 years ago “ oh I’m sorry apparently you have been lost in the system 🙈 “ Also been referred to gynaecologist as had a large ovarian cyst which was picked up on ct scan but could due to endometriosis.

So I understand being lost in the system that’s fine I’ll see someone who can hopefully help me soon, my query is I’m on a strict gf diet and obviously still having issues - I’m guessing I’ll have to have another endoscopy to rule anything out but has anyone had these symptoms and had refactory coeliacs or non responsive coeliacs I’ve heard it’s rare ? Or could it be something else?

[bookish]

Hi, it could of course be something else so I'm glad that you will finally be seen, but I don't think it is so rare that wheat gluten is not the only problem. I am totally grain free and have been for 5 years, as well as dairy free. If you are eating bought GF it may simply be too much gliaden for you, or you may be reacting to the ingredients that replace the wheat, such as corn, rice, potato starches (as I did). It is a pity with that history that they didn't do full genetic testing on you so that you didn't wait to stop eating the stuff.

You mention dental nursing and I wonder about nitrous oxide exposure adding to your problems, but either way you will not be absorbing nutrients properly and many of those symptoms could be vit B12 deficiency related. Are you receiving injections?

Best wishes

[RJane83 in reply to bookish]

Hi

Thanks for replying,

Ive just had blood test to check if I’m deficient in anything- I’m guessing vitamin D as it’s been mentioned before , i do try to supplement but when I have a bad flare up I don’t think it’s being absorbed or staying in long enough for me to get any benefits from it -I’ve only in the last few months started to eat gf bread as it’s not my favourite- but I haven’t had the energy to cook rice dishes like I used too, I have cut dairy as well a dietitian called me about 6 months after being diagnosed asking how I was getting on with GF diet - I explained at the time my symptoms were not getting better and she suggested cutting dairy and I haven’t heard from anyone since - my Gp aren’t great either just kept fobbing me off with different gastro resistance medicine- it was only when I had a positive fit test I was started to be taken seriously- I’ve started to keep a diary and take photos as I just feel I’m not being listened to 🤞🏻 I can get some answers soon

[bookish in reply to RJane83]

I hope you will get some improvement and answers soon. Going dairy free should help as you would not have lactase due to villi damage. I use everything I can on the skin by way of supplements - all the fat solubles (ADEK) plus magnesium as a spray and even iron and Bs in patches. Cheers

[cranberryt]

Did they do biopsies with your colonoscopy? I was diagnosed with celiac but still had symptoms so they did colonoscopy. Everything looked normal but they went ahead and took biopsies which revealed microscopic colitis It’s also possible you have other intolerances like dairy for example. You may need to do a food elimination test. And your gut could also be completely out of whack needing some good bacteria put back. I hope you get answers.

[RJane83 in reply to cranberryt]

Hi

Thank you for replying, I hope you are now feeling better after diagnosis of microscopic colitis

yes they did biopsy’s at colonoscopy and it’s come back clear ? I did think colitis or microscopic colitis at the time as my brother is a coeliac with colitis- there is a lot of coeliac and IBD in my family both sides unfortunately, but I still keep having blood present when I have a bad flare up - it’s gross but I’ve started to take photos so I can show consultant.

I have cut out dairy - was about 6ms after coeliacs diagnosis as wasn’t feeling any better from GF diet and dietitian suggested it.

🤞🏻I get some answers soon

[JanCymru]

Hi RJane83,

So sorry to hear you are really being put through the mill health wise. I was diagnosed Coeliac 22+ years ago, and although I followed a strict g/f diet I did find there were episodes of stomach cramp, upset bowel, extreme tiredness and other niggling symptoms. About 18 months after I was finally diagnosed with Pernicious Anaemia so unfortunately auto-immune conditions rarely come alone. (The Pernicious Anaemia Society in the Uk is a godsend and they have a group here on HealthUnlocked, should you need this in the future).

I found that I am also unable to tolerate dairy, certain veg - sweetcorn, and am very reactive to oat protein - Avanine (I think that's the spelling, but forgive me if not). I believe about 10% of Coeliacs are also reactive to the oat protein (even in guaranteed g/f oats), and given the amount of bread, biscuits and breakfast cereals for Coeliacs that also contain g/f oats the choices are limited. So do check every blinking label! I found that g/f oats gave me the same reaction and symptoms as being glutened.

I take a capsule every day which is Lamberts Healthcare Biome Balance 25 and find this has really helped stabilise my gut with good bacteria. Well worth a try.

Hope my small contribution helps, and that you find answers soon, best wishes to you.

[RJane83 in reply to JanCymru]

Thank you for replying

I’m so glad you got some answers x

yes I’ve been reading a lot lately and your right many people seem to have more than one or develop other autoimmune disorders

I’ll have a look at those capsules thank you for the advice x

[JanCymru in reply to RJane83]

Its a pleasure to try and help, especially when you are feeling unwell and everything is an effort and even reading labels and instructions tires you out and you simply feel as if you aren't taking information in! Always here to help, if I can - don't hesitate to message me. Wishing you well xx

[bookish in reply to JanCymru]

Thanks for the Lamberts suggestion. And I absolutely agree about the brilliant PAS. I too react to oats and corn and rice and millet........I just stopped eating all grains! And dairy, because the villi damage means little or no lactase to deal with the lactose, even if you aren't genetically deficient in lactase. Best wishes

[erdfreak]

I sympathise with your situation, and can say that I too was experiencing seriously deteriorating health over a 2 year period while being certain that I was completely gluten free (blood tests showed negative for gluten anti-bodies). Excessive diarrhoea (up to 12 times a day), lots of joint pain, frozen shoulder, constant gut discomfort / pain, and giving up another 'food item' about every week. I honestly thought that I was slowly dying. Didn't think I had much longer to go, and from what I have since read about Refractory Coeliac Disease, I think that is what I had/have. I was worse than before my CD diagnosis. After a hospital Nutritionist put me on the FODMAP diet, and my symptoms just got much worse, I was getting pretty desperate. It was at that point I tried the SCD Diet. Within days I noticed a significant improvement, within 3 months all joint pain had gone, and my health steadily improved from that point. That was 2015. Eight years later I still live the SCD diet about 90%, the rest being Paleo/Keto. At the risk of sounding melodramatic, I don't think I would still be here without the SCD diet. From my reading, doctors have little clue about Coeliac Disease, and even less about Refractory CD. The treatment options I have read about for Refractory CD usually just involve immunosuppressants to make the patient 'more comfortable' in the time they have left, as Refractory CD patients have an average life expectancy of 5 years post diagnosis. I seriously recommend trying the SCD Diet, or the Paleo AIP at least. I wish you well and hope your health improves soon.

[Narwhal10]

Hi RJane83,

I am so very sorry to learn. Bless you and having to give up your job as a dental nurse which you loved. I do hope you are able to advance your career in healthcare but in a different way. Maybe consider on-line teaching or something.

I have refractory coeliac disease. Eleven years ago, I had to stop working as a clinician. Last night, I went to a meeting and an older lady asked whether I was still on my CRAZY diet. My horns grew, steam out of ears and my tongue lashed her. Later knowing I was a Midwife, she asked which hospital I worked in. My answer was I do not, I work from home. Confused she asked another question. I simply stated, I am an Auditor. So, Patient Safety is part of that.

I noted this, oh I am sorry apparently you have been lost in the system.

Please contact the Patient Advice and Liaison Service, the Trust’s Data Protection Officer and you can report the Trust/Health Board to the Information Commissioner’s Office.

ico.org.uk

Data was not transferred properly, therefore it is a Data Breach.

I do hope you feel better soon.

🐳

[Researchfan]

Hi. Hope you get in to see specialists asap. Well wishes and take care.

Just a thought regarding the tummy and back passage cramps and IBS/IBD symptoms you described could be related to gynaecological issues and endometriosis. Bowel symptoms can be from there and hormonal in experience and inflammation from there. With the cyst possibly. Ovulation pains if you’re ovulating also mimic. Can be horrendous and last days.

It could certainly be something else yes. From what I have researched refractory coeliac disease would be diagnosed providing other conditions have been ruled out. You may even have a rarer gastrointestinal disease on top of coeliac disease and cd is clouding the diagnosis. Not as widely known and diagnosis delayed sometimes unless the specialist knows and experienced in it. For example it’s Extremely rare but one condition that your symptoms could suggest is FPIES in adults but recently cases documented. Rice is a possible culprit. In infants it’s usually cows milk, wheat, eggs, or rice. In adults mostly eggs, rice or shellfish culprits. This also true and similar for EGID spectrum of disorders. Eosinophilic gastrointestinal diseases (my experience). The main culprits are cows milk protein, wheat, eggs, rice, but any possible allergenic food.

I’m not saying you have any of these conditions but just point out there’s many possibilities for your symptoms yes. Hopefully you get a knowledgeable specialist.

You’re likely malnourished too with the malabsorption symptoms you have and should push to have your B12, iron, folate vitamin d etc tested for if not already. Diet therapy and supplements will be needed if you’re not already? You might do better on an individualised diet initially but would need guidance from a knowledgeable dietitian to make sure youre getting the correct nutrition. I would certainly avoid all grains and do your best to get enough calories from what you can eat that’s naturally gluten free.

[penelope2]

Hi there, you poor thing, I like many sympathise. Not knowing who to turn to and which thing to try next to eliminate.Personally I lost all faith in the NHS years ago, several things happened or didn't happen whichever way you look at it.

The private route, the labs, the therapists is the only way. Dietitians have not enough knowledge, consultants are the same, probably worse as they are not willing to see outside the box.

Speak to BANT find a knowledgeable nutritional therapist, yes it will cost but they can advise you on so much. The tests, both stool and foods and then guide you with healing your gut. You will not get this advice on the NHS.

It will be a lot quicker, you will feel positive for the first time in years and most importantly your health will improve.

Best wishes.