Coeliac disease

[debby98]

I have recently been diagnosed (a probability was stated) as a coeliac after a endoscopy and colonoscopy . I have been gluten free for 6 weeks now and still have most of the symptoms still . How long should it be before all symptons disappear ? ( like going to toilet umpteen times a day ) , I also have a underactive thyroid and osteoarthritis so am confused with what symptoms are due to each disease !

[Regalbirdy]

Hi Debby98

Sorry to hear you're still having problems. The various symptoms of Coeliac Disease can take a while to get to grips with.

What advice have you already had? Eg: has anybody told you to watch out for cross contamination of foods? Or have you been told to change your toaster, breadmaker, wooden spoons, colander sieves etc.? Have you been told to exercise extreme caution when in restaurants?

If you're certain that you are 100% gluten-free, I would have thought that you would have seen some improvement in gut symptoms by now.

However, you might be one of the many unlucky Coeliac's that have secondary food intolerances. The big one that springs to mind first is dairy. Something like 20% of all coeliac's can't cope with their having it in their diet on diagnosis. Some (like me) can never successfully reintroduce it; but others who only react to the lactose, can put it back into their diet once their gut heals.

If tiredness is one of your issues, then you should go back to your GP to have a review of your B12, folate, iron, vitamin D and thyroid levels etc. - to see if any of them are too low.

In the meantime, I would suggest considering the use of a good quality multivitamin, that includes magnesium and zinc (do this as well as a visit to the GP, not instead of!!).

It might take many months for all of your symptoms to disappear - although you will probably see gradual improvements along the way.

[Penel]

Hi Debby

Along with the advice from Regalbirdy, it can be a good idea to avoid any supermarket ready made foods, at least until your insides have recovered. Many of the additives can cause problems, as can those products containing Codex wheat.

I am now able to tolerate lactose free dairy products after having to give up dairy for a few years.

Fingers crossed that you will continue to see improvements.

[Hidden]

Hi debby98, I agree with all the advice above and would just like to add that it takes time and time for not only your villi to recover but time for your body to replenish it's iron, vitamin and mineral levels. So you have to be patient and tell yourself that you have been diagnosed and that's the first step. One of the things that seem to upset people when they have just been diagnosed is milk/dairy and this is because the enzyme that breaks down the lactose is made at the tips of our villi... which has been battered for years by gluten, which I think makes our guts more sensitive, well mine are!

You have a lot going on health wise so the more nutrients you have from your diet the better in my opinion and hopefully you will start to feel better soon.

[Polaris]

I've just popped over from the PA site and I would agree with RB that it would be as well to have your B12 tested. Reading your previous posts outlining symptoms, and being in the high risk groups of coeliac and thyroid disease (autoimmune diseases are often interlinked), it seems highly likely you may have a B12 absorption problem, which could become more serious if left undiagnosed.

Here are two links which give information and advice if you have not already seen them:

b12deficiency.info/b12-...

(there are excellent films on this site)

This latest BMJ research document also gives up to date guidance on tests and treatment.

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

[debby98]

Thank you all for your advice , you have been more helpful than my doctors 😐.I have seen a dietician at the hospital and have just had umpteen blood tests for iron ,b12 vitamin d , and various others and now have to wait 3 weeks for results and appointment with dietician again . I suppose I was expecting quick results (living in hope ) but I must be more patient ! As I said to my son I just need a head transplant and my body will be fine ! Thanks again all and hope to see improvement in the near future ,

[Jacks]

Still going to the toilet several times a day - I'd say lactose. Once I cut that out of my GF diet the toilet trips were less, as was the 'wind'. You'll soon know.

[Lickylicky]

Has anyone suggested eliminating dairy as well? I watched a video that explained that the gluten molecule and the dairy molecules ares so similar that the body may be reacting (attacking) both and not just one you could try this and see if you get immediate results I had joint pain in my hands for five months within 48 hours of eliminating gluten and dairy my pain went away completely! That was one year and six months ago! I understand that your symptoms are different than mine but it is logical that if those two are perceived as the same in your own body then possibly eliminating dairy would help you