Adult son has been told by NHS endocrinologist, his many symptoms are not endocrine but 70% chance coeliac. GP couldn't explain why. He has years of ill health, low weight gain, poor energy extreme back and muscle pain. HIs weight has improved greatly whilst taking adrenal glandulars as recommended by metabolic specialist.
Family history of autoimmune, thyroid and myself kidney removed due to obstruction.
Vit D currently 25 ( no reference range given) and told ferritin "fine".
Next step to take 100iu Vit daily and specialist advises coeliac endoscopy.
Any thoughts explanation would be really helpful.
THANKYOU !
Written by
sarahstevenson
To view profiles and participate in discussions please or .
I can offer you a thought on the vitamin D. Please bear in mind it is only a half educated guess and based only on personal experience!
When I had my vitamin D tested last year, I was told that 30 and above was normal. Mine came back as 10.2 which meant I fell into the severely deficient category. I was given very large doses of Vit D under hospital supervision to correct this. The guidelines I referred to are for my local area: dudleyformulary.nhs.uk/down.... It's quite technical but it may give you some ideas (to start you off the symbol < is shorthand for less than - I always get these ones mixed up!).
I believe most areas have their own similar guidelines.
Sorry I can't help you with the IgA part of your question. Hopefully someone else will know more than I do.
I will add that unfortunately it often takes many years to get to a Coeliac diagnosis. Looking back I think I should've been diagnosed with it as a child over 30 years ago. I never questioned my concentration and tiredness issues etc because I had never known the difference.
I'm very glad awareness of Coeliac Disease and Gluten Sensitivity is improving. Whilst I wouldn't wish it upon your son; if he has it, it is better for him to know that he has it.
I would recommend that between now and the endoscopy, he starts making his peace (and eating) all his favourite gluten containing foods. In some ways this might seem counterintuitive. However it might make it easier for him to stay on the gluten-free wagon in the future if he goes through a process of mentally saying 'goodbye' to these foods (if your suspicions turn out to be correct that is). The way I like to see it, is that he's got nothing to lose - because he has to keep eating gluten containing foods to enable him to have the endoscopy. If the diagnosis is negative then all he does is carry on as before.
Also be aware that you can be Gluten sensitive without being a Coeliac. However don't worry too much about this side of things yet/for now.
Thank you , Regal birdy mmm does sound like his experience too - CAKE sounds good especially as he loves baking! Can it make it flare up as he trying to manage a new job too?
Your son may wish to conduct some of the Cyrex tests which are much more sensitive than GP tests (which often are negative despite obvious symtoms) and he can check for antibodies throughout his body as well. These are the lab tests recommended by Tom OByran in the latest Gluten Summit. Edited to remove link. Bear in mind many autoimmmune conditions are linked to gluten
Vitamin D level far too low - optimal is at least 50-80nnmol and he will need a higher supplement dose to bring his levels back up. Re test vitamin D after 3 months supplementation - this can be done through GP or home spot blood test kit for £30
Some of the Cyrex tests will look at gluten / wheat (array 3) / cross reactive foods (array 4) and array 5 will look at antibodies including those to the thyroid and adrenals
Mmmm all through his life now 29, he has had brain fog , "spaced out time" and has problems coping with excessive stimuli eg lighting , noise etc etc. Through childhood he had food sensitivties especially colourings including natural orange and nightshade family. Back and neck pain have been throughout his life and he has "managed" (barely) with chiropractic , physio and acupuncture.. He cannot establish a social life as the energy required for work totally exhausts him. He is just embarking on living away from home again. Fingers crossed he can cope physically this time. NOne of which last forf very long He was diagnosed dyslexic in his late teens but came out with a first class holns in science from uni.
Stupidly I missed a zero on the Vit D dose- should have read 1,000iu but it looked low to me too. I currently am on endo prescribed fultium 1600iu.
He has been told he is fine re thyroid and adrenal but adrenal saliva test shows LOW cortisol throughout the day.
Next step for him to book GP appt to follow through Endocrinologist recommendation of coeliac endoscopy and Vit D supplement levels.
If he does turn out to have an issue with gluten, then I'm sure you won't mind hearing that he doesn't have to give up baking. He will have to learn to use other types of flour though, and quite a lot of trial and error! Many of the GF cakes are crumblier but taste equally as good.
Managing a new job and juggling with health issues I suspect is likely to be difficult for him (again I can relate to this one!).
The main thing I can suggest is to get him to push for the endoscopy to happen asap. In my case, that meant asking to go to a hospital that was a bit further afield than I would normally go. But by doing so, I shortened my waiting time by at least eight weeks. I found that you get to a point where you just want answers and it becomes worth the extra travelling.
I also found that mentally that waiting for the appointment got really tough. After all, you are being asked to eat something that you now know is potentially making you very ill. You have to fight the temptation to take gluten out of your diet to see if it makes you feel better - because if you do, it skews the endoscopy results. Very frustrating, I can tell you!
Has he had any other blood tests like the Ttg test?
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 DISEASE WITH IBS
Are you a coeliac? Or are you 'living with coeliac disease'?
Coeliac and osteopenia
Anyone had Vit B12 deficiency before being diagnosed with coeliac disease? 
