Hi everybody

It's me sid with a quite a few problems..

Arthritis..psoriasis..epilepsy..diabetes and latest one is celiac disease.

The last one is the what I'd love to get help and advice or just general chat..

[Lisahelen]

What sort of help do you need? Is your diabetes type 1 or 2? The more you ask Sid the more we know how to answer you.

[Hidden in reply to Lisahelen]

My problem is the coeliac...the consultant has told me to go off the gluten free diet they told me I needed to go on...they're doing this to check if I have some lactose problem she said - endoscopy etc need to be done only after I start eating gluten for about 6 weeks.

Has anybody had this done? And had to change diet etc?

[Lisahelen in reply to Hidden]

Not me personally but loads on here have experience of having to reintroduce gluten to their diet and are more able to relay their stories.

[Jacks in reply to Hidden]

Yes. It's called a 'Gluten Challenge' and lots of folk on here have been through it, me included. I had to go back on gluten prior to endoscopy - otherwise itchy have been be a waste of time. (And who wants a tube down their throat to be a waste of time!) So do what they've asked and try to enjoy what you have been missing

[judburke in reply to Hidden]

Yes you have to stay on the gluten until you have all your tests completed and your Dr is sure you have good results. If you are Coeliac and you go gluten free your body starts to heal and the extent of the damage won't be visible on the endoscopy and biopsy. In your gut you have hair like structures called vili. In healthy people these absorb all the nutrients we need to keep our bodies healthy. In coeliacs the vili get damaged (caused by the gluten) and it stunts them so they are tiny and cannot absorb all the goodness we need. When you go gluten free the vili start to recover.

If you are trying to understand more about Coeliac I recommend looking at the Coeliac UK website. There is a lot of great information on there and they are very helpful if you need to call them. If you join the group they give you a Food Directory which you can get as an app on your phone - you can also scan food labels to see if they are safe for you. These tools are very helpful for when you are first diagnosed as there is quite a lot learn about hidden gluten.

Coeliac UK also have local support groups or they can offer you a support person. Some groups meet once a month for an informal coffee.

There is some learning to be done when you are diagnosed Coeliac and its so important that you go 100% Gluten free if you are CD. But its worth it - I feel so much better now than I did 2 years ago before I found out I had it.

[corby39]

I have been diagnosed for about 7 years and still suffer from stomach pain and loose bowels.i adhere toa strict diet .although I eat out once a week and would say a lot of resteraunts don't understand cross contamination.dont see a improvement in the near future.

[Penel in reply to corby39]

Cross contamination can be a problem, but perhaps there are other foods that are giving you a problem?

Dairy can often cause digestive problems for coeliacs. Also some ready-made gluten free foods contain additives which can cause unpleasant symptoms (emulsifiers, stabilisers, cellulose, gum).

Have a look at probiotic and prebiotic foods or supplements to help improve your gut health and perhaps talk to your doctor about your continuing stomach and bowel problems.

[Hidden]

Thanks everyone for your replies...they've definitely made me feel like there's people out there who understand!!

[Patcy2468]

Hi sid ceiiac disease is a mine field of do.s & donts & the most important thing I would advise you is to stay on a strict gluten free diet because you can get so much damage in yur intestines with eaten gluten now you have celiac disease& its vital you get your own toaster becouse even a little mi nute of a crumb can make you feel like hell & also make sure you cook your food separately from your familys so you dont get contaminated with gluten in you I learned the hard way cos for yrs thry said I had ibs untill I lost so much weight & needed a blood transfusion right away becouse I had severe anemia brought on by not getten the right nutrients & eaten gluten unknown to me I had coeliac disease becouse ibs has the same symptoms as celiac disease so dont suffer like I did for yrs thinking I could get away with eaten gluten so you carnt eat wheat rye oates & barley & only buy products that say gluten free or what I buy free from gluten free from wheat on the labelling keep safe & good health patricia

[Winger65]

Hi Sid. Me too as it’s the thing to say! Type 1 for 43 years, epilepsy for the same, thyroid disease, Dupytrens and now low bone profile. Oh and Sagittarius which makes me clumsy! I’ve been fed up but still waiting for an endoscopy. It’s a steep learning curve alright and I’ve found when I’ve tried some gf food it’s either loaded with sugar of absorbs differently to what I’m used to. Hypo’s all over the place. I’m worried my epilepsy meds aren’t absorbing and that’s adding to it all. I thought I had peripheral neuropathy but maybe it’s CD now? Questions questions. Please keep me updated, I also need friends who get it 😊