Gluten free diet help!

[mand82]

Just seen the doctor today and his put me on a gluten free diet for 6 weeks then I have a blood test to check for absorption problems he doesn't think my vegan diet has anything to do with the way I've been feeling etc and said if ignored my b12 etc levels could come crashing down again so getting tested but gonna find this 6 weeks gluten free diet hard as all my vegan food has wheat in it and I can't have bread as the gluten free version has egg white in it

[pvanderaa]

Did you get tested for B12 levels?

[mand82 in reply to pvanderaa]

My b12 levels were retested on 1st June and was 689,

My doctor is testing for these

"Pathology Request (Request Sent):

Autoimmune profile (Requested), TG IgA (Requested), FBC (Requested), ESR (Requested), Calcium & Albumin (Requested), 25-OH Vitamin D (Requested), Ferritin (Requested) "

[Catz72 in reply to mand82]

Hi mand82

My child has coeliac disease and is on a gluten free diet. Schar bread does not use eggs.

You should not start a gluten free diet until all the tests for coeliac disease have been done. Please refer to coeliac.org.uk about getting diagnosed for more information.

[Lisahelen]

You need to be tested for coeliac before cutting out wheat/grains as you will only have to reintroduce them again - (not an easy task for many people) to get a true confirmation at a later stage. As catz says take a look on the coeliac uk site for relevant info.

[mand82]

My doctor isn't testing me for coeliac as he said he doesn't think I have that his testing me for a absorption problem as he thinks there's a chance I might not be absorbing the vitamins

[Gambit62 Administrator in reply to mand82]

mand82 - really having problems understanding why your GP is asking you to go gluten free before testing - as are others here.

Coeliacs is a potential absorption problem but you need to be on a diet including gluten for that test. Test for PA as an absorption problem doesn't require going gluten free.

I'm far from being an expert but I'm not aware of a test that would be affected by a gluten diet.

[mand82 in reply to Gambit62]

He said to cut out gluten for 6 weeks then have a blood test and see how the test goes and if it was the gluten that was causing the problem cause if not the blood test will show up the same as before , think he wanted to cut the gluten out first to see if without gluten I'm absorbing vitamins or not , I'm not sure myself what's really happening bit confusing still he did say something about it's like 3 cylinders but only 2 working and he needs to find out what's wrong , I'll just have to wait the 6 weeks out & hope that the blood results in august come back with something that can be sorted with, least I can now get my blood results online now

[Galixie in reply to mand82]

I'm confused by your doctor's reasoning. What I hear you saying is that your doctor isn't going to bother to test you for a gluten intolerance/celiac disease, yet he wants you to give up gluten for six weeks to see if, suddenly, you begin to absorb vitamins normally.

There are a couple of problems with this approach:

1. Most celiac patients don't magically heal overnight, so if it is a problem with gluten, vitamin absorption may not normalize for months.

2. As you pointed out, most of your diet contains wheat. If you don't find adequate substitutes for your regular diet while on this six-week plan, you could easily end up not eating enough, which would put you at a vitamin deficit regardless of an absorption problem.

I think your doctor needs to be more definitive in what he's looking for. If he suspects a gluten problem, then he should test you for that. You need to continue to consume gluten in order to get accurate test results.

How many vitamins are you deficient in? If you are only deficient in B12, did you take supplements of B12 previously? A vegan diet eliminates all natural sources of B12, because B12 is only found in meat and dairy products, but if you were taking a supplement and your level was still low, that would point more to an absorption problem.

Can you ask your doctor to test you for celiac before you commit to trying a gluten free diet? Maybe also ask what other absorption problems he is considering testing you for. Celiac is not the only thing that causes malabsorption. It is worthwhile to check for it, but only if it is tested correctly.

[LorraineQ in reply to mand82]

You need to have gluten in your system to see if your allergic to it, doesn't make sense what your Doctor is asking you to cut gluten out, and a blood test is the quickest and most effective way of getting true reading

[puncturedbicycle]

I think it would be helpful for your doctor to clarify exactly why he believes you need to be gf before this test.

Absorption issues are a problem with coeliac, but you don't necessarily immediately start absorbing nutrients well the moment you go gf. If you do have coeliac you may have intestinal damage which could need to heal before you see a difference.

Unless he is looking for some kind of informal absorption issues that aren't cd but are somehow gluten related - ?

Assuming this is not an nhs doc.

[Lisahelen in reply to puncturedbicycle]

Im a year in now with my coeliac diagnosis and i would say that i still have massive problems absorbing nutrients! So it be interesting to see if you magically heal as your dr thinks you will.

[mand82]

My doctor doesn't think it's anything to do with coeliac ,

I have iron deficiency and vitamin d deficiency but on vitamin d tablets did have b12 deficiency but that has gone up from 117 to 689 now , had loading doses in early march only source of b12/iron is cereal and soya milk which I get my daily amount of b12/iron everyday ,

[Gambit62 Administrator in reply to mand82]

I presume that you are using cereal and soya milk that have been fortified as otherwise there won't be any B12 in either.

The B12 in your blood is likely to be the amount that is still lingering from the injections

[mand82 in reply to Gambit62]

Yeah the cereal has b12/iron and soya milk has b12/b6/iron and vitamin D ,

Another doctor said the injections would of gone out of my system by now as it's been 3 months

[Gambit62 Administrator in reply to mand82]

people vary a lot in how long the B12 stays in their blood ... and how the amount in blood relates to whether they are symptomatic after B12 shots - back to B12 levels not really meaning much after you are have had loading doses unless they come back low.

Doctors are very fond of quoting averages as if they apply to everyone - and with B12 that is far from being the case.

[mand82 in reply to Gambit62]

True, least this doctor seemed more sympathetic and wanted to help unlike the other doctor who didn't seemed to and probably went by the textbook, one good thing about doing this gluten free diet I might end up losing some weight 😂, just about afford vegan food and gluten food is even dearer £1.50 for shops own brand 300g gluten free cereal but normal Frosties is £2 for 750g 😒