Hello I’m posting on behalf of my dad and hoping for some advice for him. He was diagnosed with coeliac disease around ten years ago in his early 60s after his whole life suffering symptoms which were always written off as IBS until his eventual diagnosis. He has been on a GF diet since then but he is still in huge amounts of pain, and has just had his second bout in hospital with severe bladder and colon spasms needing catheter and pain management.
He is totally fed up at this point and doesn’t seem to be getting any help other than medical practitioners saying the GF diet should be stopping all his symptoms.
Has anyone else here been diagnosed that late in life and is now dealing with the effects of the wrong diet for so long on their nervous system and digestive system?
Any advice or suggestions on what to do or who to see would be much appreciated
Written by
kikimouse17
To view profiles and participate in discussions please or .
Read up on Refractory Celiac and raise with his GP/Gastro. Treatment can be a small dose of certain type of steroid. Also not sure where you live but might be worth asking for a referral to Celiac expert. My Consultant told me if you have Refractory Celiac you will still have evidence of damage via Endoscopy so that might need to be repeated.
Thank you Dottie. He was always suffering from his symptoms but just told IBS or was ‘all in his head’. He was relieved to finally get a diagnosis but struggling now with all the damage done over the previous 60 years. Thank you again we really appreciate it. Xxx
I know how you both feel. It is great that so much more focus is put on this condition now. BUT I do think about all of us that were told "in your head, IBS etc" We have gone on to suffer far too much. Just take heart that he is not alone in that journey. Sheffield is a Centre of Excellence. xx
I know exactly how your dad feels being told it's all in your head when you know it's not. I spent from mid-teens to early 80's hearing that, before I was properly diagnosed. Wish I could go back and bitch slap every doctor that blew me off with that "mental issue" garbage.😜
I have been diagnosed recently and i am in my late 60's. Had digestive symptoms and bowel problems for many years. It was IBS, or later just constipation, loopy bowel etc. many diagnoses until this latest. I have had 2 positive blood tests, but the biospy was clear. Been following the diet for only 4/5wks, and not really any better. It does seem to affect my bladder also. I suppose i will have to give it longer, but really the gluten free foods dont suit me as i used to keep to low fibre, and thats difficult with gluten free
My bloods were negative because I have a condition called Hypogammaglobulinemia which blocked the response. What is more interesting is that prolonged undiagnosed Celiac can cause Hypogammaglobulinemia very occasionally in patients which sometimes will reverse once on a Gluten free diet. For decades I was told I had Interstitial Cystitis. Fast forward to 2014 and seen by a Uro/Gyne who repeated testing but this time she followed Nice guidelines. She also took a biopsy of my bladder as red raw. The results came back with Mast cells in my bladder wall. The IC diagnosis did not fulfil the Nice creteria. She told me you do not have that condition but you do have an Autoimmune condition I'm just not sure what. Fast forward several years and went Gluten free and all those symptoms went. Of course Celiac is autoimmune. My Fibromyalgia and weakness of muscles turned out to be Gluten Ataxia. All the perils of a later diagnosis. Hope some of this is useful and also to those who were missed initially. Never just rely on the bloods being enough to rule this out.
I'm 68 shortly, and all my adult life had symptoms of celiac/IBS/ulcerative colitis/lactose intolerance/Pernicious anemia/MS. Many many visits to the GP over 50 years, and got nowhere, except for being told it's in my head! I eventually stopped gluten and after research found gluten in celiacs damages the villi in the ileum which prevents the villi making lactase which allows you to digest lactose, and the villi should reabsorb vitamin B12. Without the villi one can get symptoms of all the above, which I did. Stopping gluten in my diet, resulted in most of my villi repairing after nearly a year and I'm able to function more or less normally, so long as I keep away from gluten and inject B12 every few days. The GPs know I inject B12 and avoid gluten, but say nothing. I wish I knew I was celiac 50 years ago. Wishing your dad all the best, but always take what a GP says with suspicion, they just want you out of their surgery really.
Also the longer it is missed the more complex it becomes going way beyond a gut issue. I still have to take Lactose tablets two years on. Good luck and thank you for the information.
I can indeed relate to your dad. I can now look back and determine that my Celiac and Hashimotos began after a reaction to the OPV and Tetanus shot at age 14 in 1963. As time went on I developed other problems; seizure disorders, IBS, allergies, Dermatitis Herpetiformis (Celiac skin disorder), eventually Chronic Fatigue and Fibromyalgia. Although seeking help for decades and getting none, I was finally diagnosed in my early 60's after 45 years of suffering by a Homeopath/Chiropractor. I recommend that your dad not only remain GF, but remove all grains from his diet, along with anything that contains soy. He may eventually have to pay attention to any food he eats that he may react adversely to and discontinue it. If he doesn't already read labels, that is a must for hidden ingredients such as MSG, Maltodextrin, anything corn based, so called natural flavors, artificial sweeteners, Polysorbates and PEG, etc. Research is key. I think most of us Celiacs finally come to the conclusion that GF foods are nothing more than junk foods and don't bother with them.
I have such a similar story to you. Starting younger, missed and then a snowball into many symptoms and struggles. The Dermatitis Herpetiformis only hit me in my thirties but has caused no end of pain and anguish. . I am now in my sixties. One bad seizure in a restaurant, eating gluten, drinking gluten and run down tipped me into overload, thirties. Wishing you well.
Yeh, I know right? What a circus. The DH will catch up with you if the Celiac isn't caught in time. Mine developed around 5 years or so after I believe to have developed Celiac or in my early 20's, along with the IBS and environmental allergies. And, then CFS in my mid-30's after my fourth baby was born and then no sooner did I have that under control when the Fibro showed up. That took 8 years to control. But, it has a way of showing up from time to time. What a s-show it has been, you know?
I have never used any anti inflammatory for my DH. I control it with diet and topicals that have no grains or anything unnatural in them. My shampoos, conditioners, and lotions are beef or bison tallow based and only have two or three ingredients. If I have an outbreak, I use Aloe, baking soda rinse, and Arnica. I have never done well with OTC drugs or Pharmaceuticals.
Oh no sorry I meant that when I have had to take anti inflammatory such as Ibuprofen it flares my DH up. Aspirin the same. I have yet to find pain relief of anti inflam that does not.
I'm glad your Dad has at last received some diagnosis. I was in my late 40's when finally diagnosed (had to go privately in the end as GPs stuck to IBS and stress and anxiety as being the cause of my digestive problems). I also found within 18 months that I had Pernicious Anaemia condition - the two often go hand in hand and have all manner of symptoms, so bear this in mind too. Refractory Celiac is another possibility to consider. Have you joined Coeliac UK? They have a wealth of information and can be contacted too for additional help.
It may be that your Dad's digestive system has been so battered (*sorry, that was an unintentional pun, knowing we can't eat traditional batter!), that he may be sensitive to other foods too. FODMAP foods might be worth looking at, and also I found I was severely reactive to the oat protein *avenine, I think it is called. Even in gluten-free oats this protein is present and I found it to be as bad as having ingested gluten. A food diary is valuable to keep. Has your Dad been referred to a dietitian? That might help.
Really hope some of this information is useful to you and your Dad.
It may likely be a later diagnosis and older age will take some time for healing coeliac related inflammation and damage. Similar scenario to undiagnosed diabetes and nerve damage, gluten can also damage nerves and other organ systems outside the gut, sometimes irreversible and partial healing takes place. The average for total gut healing is three years. The body will do its best to repair what it can given time and supply of nutrition.
You likely already are but it cannot be reiterated enough to patients still suffering even on a gluten free diet to Be absolutely strict with the gluten free diet. The standard gf diet, unfortunately, of just swapping regular wheat versions of foods to gluten free versions from the supermarket might not be adequate or enough to supply therapeutic nutrition for healing. Gluten free grain products are not usually nor have to be by law fortified with vitamins and minerals like wheat counterparts neither. Therapeutic nutrition is needed in coeliac disease as it’s a malabsorption condition and this is sometimes overlooked even in medical professionals. Just cut out gluten and all will be well is the tip of the iceberg for many. Without knowing your dads diet specifically , some general rules that might help hasten healing are:
Avoid lactose! Whether have primary lactose intolerance as is normal for alot after weaning or secondary lactose intolerance from villous atrophy and coeliac induced malabsorption. Even if you already avoid dairy, lactose can be hidden in so many foods and a study published in the British Medical Journal highlights it the culprit of not just digestive conditions but also extra intestinal diseases affecting other organ systems. And painful conditions from joints to nerves. Many medications also contain lactose.
Avoid added sugars as it causes leaky gut, feeds bad bacteria in the gut as well as weakens the immune system. You want to do everything possible to help strengthen the immune system in order to heal the gut ultimately. Heal the gut and everything else will fall into place.
Take B complex vitamins especially thiamine for the gut.
Does your dad eat gluten free oats? (Whether porridge or hidden in gluten free biscuits for example?) There’s a study showing some coeliacs suffer the same gluten enteropathy from oat ‘avenin’ protein. Meaning oats are toxic as wheat barley rye to them. Strict avoidance is necessary.
Casein in milk also can be recognised in some coeliacs as if it’s gluten and cause inflammation.
This all depends on genetic susceptibility. Without a repeat endoscopy to assess whether there’s still evidence of Coeliac damage it’s hard to say if milk and oats are potential culprits with ongoing issues. You would need the care of a knowledgeable gastroenterologist. There are papers published by Alessio Fasano on the gluten free diet protocol when refractory celiac disease is suspected.
Hope this info is helpful and all the best for healing to your dad.
I was diagnosed at 60 eleven years ago having suffered since age 15 and had a similar path to diagnosis as your dad. Mostly the all in your head one. I was doing not too bad for a while then symptoms returned with a vengeance and I was losing weight rapidly. I began to think I might have refractory sympyoms and requested to see a GI consultant again. After a light bulb moment when I mentioned the weight loss he arranged to test fecal elastase. It came back with a very low reading and I was diagnosed with Pancreatic enzyme insufficiency. It a not uncommon consequence of late diagnosis of coeliac disease. My bouts of pain were pancreatitis. Basically I am no longer able to make the stuff that digests the food we eat. I was prescribed Pancreatic Enzyme Replacement Therapy which I take while eating and apart from occasional slip ups of eating something that disagrees with me, life is almost normal again. - if you call being coeliac normal that is. Might be worth asking for the test, even if he isn't losing weight as not everyone does. Needs a consultant appt though. Hope you figure it out.
Hi! I know I am late to reply to this - and it may be a stupid question - but has your Dad's vitamin D levels been checked (needs to be 25-OH test) Coeliacs are known to be prone to this as it doesn't get absorbed in the gut properly. The amount of issues it can cause in numerous and varied. I am only saying this as I have just been tested recently and my levels were really low - it can manifest in bowel and urinary issues as well as making your immune systems plummet and low mood and fatigue.
I can certainly relate to your father, I am 75 years old and was finally diagnosed at age 61 for IBS, Celiac, and Hashimotos. I had symptoms from my mid/late teens and it took 45 years to get a proper diagnoses and help. That help came from a homeopathic chiropractor and not any allopathic doctor. I recommend that your father go completely grain free and no soy products, either. As for other foods he should probably keep a food journal as to any other foods that fire up his gut and IBS. I don't know if you are able to order Dr. Richard Schultz's (HERB DOC) online, but he has a product I have used off and on for almost 35 years. It is called Formula 2. It has been a godsend for me.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Coeliac Clinic.
Travelling abroad with coeliac 
How may coeliacs haven't gone GF because the fear of being glutened seems worse than the original symptoms?
Tummy bugs and Coeliac
Coeliac still showing symptoms 
