I had a gastroscopy in march to test for celiac as i had a very high positive blood test, I received a letter this morning saying that it was positive for celiac and that he is happy to discharge me back to my GP for management of my celiac disease,
So my question is what will happen next? Or should happen? As we all know you can’t get to see a doctor, so I really don’t know what to expect , I’ve started to cut out gluten but i wanted to ask them questions about it, e.g about my joints and vitamin levels.
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Mhymer
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Hi,I don't know how you feel about it but it's not the end of the world.
When I was diagnosed I researched as much as I could and found the Coeliac UK website
Have a look at that as there is lots of information, advice and recipes.
You will now need to follow a gluten-free diet. Not as bad as you may think
Easy to do at home especially when cooking from fresh. A bit trickier when eating out but most places are very helpful in identifying GF options. Lots of menus also indicate what is gluten free.
As far as meds are concerned I was put on calcium and vitD tablets along with allendronic acid tablets for bone calcium density after a dexa scan. I also drink lots of milk.
Join Coeliac UK, it's a great organisation with lots of useful advice. They also have local groups where you can meet up with other coeliacs.
You will probably be assigned to a dietician, but i found them to be quite poor, and amazingly, uneducated!! I would read as much as you can about it. Learn to read food labels. I take vitamin d, b12 and a multitude of other supplements to feel human... (some people take coffee in the morning to get the same effect!!). Just try and chuck out any junk, drink loads of water. Get plenty of sleep, maybe even a food diary may help also. I took dairy out also, i would speak about that whilst with your Doc. There are many places now who do gluten free food, the options are quite plentiful both home and abroad.
Just try and be patient with yourself, it takes a little time to adjust, but once you have, you'll be grand!!
Thank you for the advice, it feels a bit overwhelming I must admit, but I know I need to do because of how it affects me, I’m just pleased now that I have an answer instead of the doctors saying it’s IBS
I couldn’t agree more, and pardon the pun, trust your gut. My experience with doctors and dieticians has been terrible. Hopefully yours will be better.
There are many good eggs on here who will be only too glad to help and offer good advice.
I went with the mantra in the end, for a while anyway, whilst I recovered; if I’ve not cooked or baked it, I am not eating it.
I learned to cook a vast array of foods, cakes and such like. So there is positive in this.
I also use Mct coconut oil, 1 teaspoon each morning, it made a massive difference to the quality of my life, once I introduced it later on.
Keep an eye on your Thyroid meds as my dose changed as my body adjusted to Gluten free. Also weight might change which also might alter how much you take. Good luck.
Thank you, ..I will do,… I had them checked a couple of months ago because i felt like they weren’t right, but all the doctor checked was TSH , 😏 and not T3 and T 4 , which as you know they are as important, my results were just under 2, so they won’t do anything because it’s within range,
There are a few things to consider as you go GF especially if others in your household will not be. 1) consider getting some dedicated GF pots/pans/utensils etc. I have one frying pan, two small pots. a spatula, giant spoon, measuring cups and utensils that are mine only. I try to run two separate loads in the dishwasher. 2) If a food is gluten free it can still be contaminated if it is cooked alongside gluten foods. ie. a shared toaster or shared fryer. At home I have my own toaster oven. When I eat out, ask if the fryer is a dedicated fryer (most are not). 3) Always read labels and check restaurants nutrition info. You would be surprised where gluten lurks. And beware of “modified food statch” as it could be gluten based. 4) You cannot cheat with celiac. You can get really sick with even a little gluten contamination once your body adjusts to not having it. It varies by person but for me it will be a miserable night when it happens.
Coeliac UK sell toaster bags to pop bread into. Also GF stickers. I have my own butter spread pot. Anything that might have more than one person dipping in I kept separate . Such as Jam jars etc.
Well you can finally, breath a sigh of relief that ‘You have the official rubber stamped diagnosis.’
Like any disease/illness/condition, it is a learning curve and it can be overwhelming. So, educating yourself about it is at your own PACE. Obviously, you know your individual signs and symptoms which with Graves’ disease can be hard to distinguish which one of the autoimmune diseases are causing the problem.
Like SaabDriver has suggested Coeliac U.K., across the pond, Celiac.com is one I particularly like.
From a clinical perspective but it depends on where in the U.K. you live the standard is you have been referred to a Dietician or Specialist Nurse. You will have blood tests to check iron stores - ferritin, a Full Blood Count, Vitamin D level, folate level, calcium level, vitamin B12. Referral for a DEXA Scan and offered a pneumonia vaccine.
Unfortunately, doctors are not trained in nutrition as it was taken off the syllabus 10 years ago. Generally, your GP will not know that ‘it is a systemic autoimmune disease which causes malabsorption.’
Lots of us check our toiletries too because they may have traces in. One of the most important things is learning when and where to refrain from trying to educate your circle of people. My collection includes :-
i) You are too young to have an illness !!
ii) Can’t the doctors do anything for you ?
iii) A little bit won’t hurt !!
However, the gluten-free biscuit goes to a person who was told by a friend that their uncle’s cousin had it for 3 days. Like SaabDriver has said, eating out can pose problems. Although, Professor Dave Sanders’ top-tip is to simply say to the person serving you, I am wondering, if you can help me please ?
Prof Dave is the Chair of the Health Advisory Council of Coeliac U.K., author of Gluten Attack*, a gastroenterologist and all time legend.
Thank you for the information , I can’t get over how it can affect you, it feels like an uphill battle doesn’t it , and to add to it , I’ve started with peri menopause, which the symptoms are a lot like Graves’ disease,
I was diagnosed Coeliac years ago. Firstly there is a good range of Gluten Free products at most food shops. Bread and Beer are the main the products that contain Gluten. I found that I lost weight a bit, but generally I am much healthier. I do take a general vitamin pill daily. It is quite difficult for me to put weight on, and I eat all the food I want to. I am sure you will benefit and feel happier and healthier.
Hi, I have been gluten intolerant for some time, after my mother had coeliac disease. I have now been referred for further investigation, after a lengthy bout of constant discomfort.
I buy bread, pies, jams and chutneys etc from gluten free only producers , delivered to my address, and had been stable until that event. I cook a lot from fresh and am careful to buy cosmetics, toothpaste, hairspray etc which are gluten free. I am prescribed calcium tablets with extra Vit D.
What I did not think about was other vitamin tablets!! I had bought a different brand of multi vitamins from usual and over a period of three weeks when taking them was in constant pain, bloated and with erratic bowel movements. Once I realised and stopped taking them I have returned to my normal state. I now buy gluten free ones, which inevitably cost more. I continue with my usual diet, seldom eat out but use carveries if I do, and now am careful that any supplements I take or rehydration tablets etc are gluten free. Costly, but well worth it.
Good luck with exploring items suitable for you. Encourage friends and family to learn with you….
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