New to gluten free

[blackqueen65]

Hi I've just started a gluten free diet as a trial, not diagnosed celiac, and wondered how long it takes to notice a difference and also how long I would need to be on it to do a gluten challenge.

I have hypothyroidism and was diagnosed with CFS last year and my occupational health doctor suggested I try a gluten free diet. I did have the antibody test and the result was 3.74 range (0 - 4) so my GP said it was negative. I don't really have a lot of stomach problems but I get almost daily headaches and in the last 15 months have been getting severe migraines along with the chronic fatigue.

Any advice would be appreciated.

Regards Shaz

[Hidden]

I think that you probably need to give it a couple of months. If you don't notice any huge improvements then it's probably not worth carrying on. Do be aware though, that cutting out gluten often means you eat very different foods and that anyone who cuts out bread/cakes/biscuits/pasta would notice some differences.....perhaps do a trial and then reintroduce some and see what happens.

Just picked up on something else in your question. I also have a thyroid problem. Until my thyroxine was at the correct levels i suffered with extreme fatigue and headaches/migraines. My bloods were coming back in the 'normal' range but until they got my T4 up above 19, I didn't feel well. Since it has been kept at that level, I have loads of energy and no longer have any headaches or migraines.

[blackqueen65 in reply to Hidden]

Thanks jillp I'll give it a bit longer, can't say I've noticed any difference as yet. I agree about the thyroid and really think that's most of the problem as My FT4 is only at 15 at the moment but doctor won't up my dose as my TSH is 0.02, in fact she reduced my dose and I felt really ill so have persuaded her to put it back to the original dose just whilst I wait to see an Endo. I have an appointment with an Endo at the end of May so hopefully might get some answers then.

[Hidden]

Fingers crossed for you. My T3 is always slightly raised but this does seem to suit me. I've now been reasonably stable for the last 8years even though I'm going through the menopause which does have a knock on effect. I hope you get sorted soon.

[FionaGFG Administrator]

When you say occupational health doctor is that a work doctor or a new age doctor? I ask as a any GF diet should be supervised by a real doctor. Most people who are sensitive to gluten or coeliac would notice an improvement in 2 weeks or so. However, bear in mind that cutting gluten out completely will make reintroducing it for any gluten challenge very hard as if you are sensitive you'll really feel ill eating a lot in one go.

Another option would be to ask your Doctor to run:

- B12

- VitD

- Folate

- Iron

- Ferrtin

tests

and

- repeat the tissue transglutaminase antibody (shortened to 'tTGA') test (labs can make mistakes)

plus

- Endomysial antibody (shortened to 'EMA')

And

- test you for IgA deficiency

Then at least if these are all fine you will know you're going into the GF diet with your eyes wide open.

As Jillp says Thyroid problems can cause a myriad of issues and in our experience here most Doctors don't seem to understand how to adjust the meds to get your levels correct. Make the most of your forthcoming Endochrinologist appointment. Do ask them about your B12, intrinsic factor and Pernicious Anaemia. Often thyroid problems and PA can go hand in hand. Your Endo will know a lot about PA and can help rule that out.

Personally if I were you I'd just lower my gluten intake (no bread, pasta once every two weeks) and have a full chat with your Endo about it all instead of diving in without much support onto the diet.

Your headaches and chronic fatigue can be caused by deficiencies in many things inc iron, VitD plus high blood presure or eye problems etc. Also track your foods and see if wine, cheese or chocolate are causing your headaches or they are link to your hormonal monthly changes.

[blackqueen65 in reply to FionaGFG]

Hi Fiona thanks for all the info, yes it was the work occupational health doctor (I worked in a hospital) that thought I may be gluten intolerant. It was around 15 months ago and I've since had to give work up. My GP tested me for Celiac and lots of other auto-immune diseases and they all came back negative but I've since read that the blood test for celiac isn't always definitive. I was diagnosed with Vit D deficiency at the same time and was given the 20,000iu D3 once a week to get my levels up. They also tested B12 and my level at the time was 693 but I haven't had it redone recently. I was going to get my GP to test folate and all the other ones but now I'll be seeing an Endo I'll wait and let them do all the tests at once. My GP did test my ferritin recently as I was getting restless legs and it came back at 36 which she said was fine but after reading about thyroid on here most people think it should be a lot higher so I intend to start taking some iron as well.

All through the last year I've been taking a good Multi B supplement plus sublingual methylcobalamin, I carried on with Vit D3 @ 5000iu per day after the prescription ones ran out and I was also taking Magnesium malate, Vit C and EFA's but I was just feeling worse every week especially the migraines so about 2 months ago I stopped them all to see if it made any difference. I have started the Vit D back and intend to add the others one at a time but I might wait till I've seen the Endo and get all the actual levels.

I just thought as a last resort I'd try the gluten free for a short trial and then try eating a slice of bread or some Weetabix and see how I reacted but wasn't sure how long to leave it. I have tried tracking foods and I sometimes notice a headache after certain foods then when I leave them out for a week and re-try I don't get the headache. They definitely get worse before a period so I'm hoping the Endo can test my hormone levels as well.

Thanks for your help it's frustrating that doctors don't seem to accept how nutritional deficiencies can impact on other illnesses.