Testing

[Chubbers]

I have been told to go gluten free however is there testing to determine whether it is necessary? I do notice more gut issues with gluten. When I avoid gluten my gut feels better. My reflux goes away as well. Any insight would be appreciated.

[Activity2004]

If you have "gut" issues, I say going gluten free would be a good idea. How long did the "gut" issue start?

[Chubbers in reply to Activity2004]

Well I've actually had issues for some time. Found out in my 20s I am lactose intolerant. As I got older started having acid reflux. Within the past year I have had bloating. When I avoid gluten the symptoms all subside so I guess it can't hurt to keep avoiding it.

[Tea1234]

Mine was the same, however my blood test come back negative due to me cutting out gluten,wheat and dairy. I feel much better as I have no longer got the horrible rash all over body. Good luck to you. Hope all goes well.

Tea123 😀

[lb003]

Same here. No bloating, reflux or cramps since going gluten free. I can stay awake all day too since stopping gluten.

[Regalbirdy]

Hi Chubbers,

My first question would be, told by whom?

My advice is not go gluten-free at all - until you've had a Coeliac blood test done by your Doctor (and potentially any follow-up tests).

I can't emphasise enough how important that is. Please rule out the most obvious cause before you go messing around with your diet!

Going to gluten free and then asking the GP for a blood test is a waste of time - because it often leads to a false result.

In hindsight I wish that someone had encouraged to me to go to my GP a lot sooner than I actually did. I was diagnosed with Coeliac Disease in 2013.

You can be gluten intolerant without being a Coeliac, but you won't know any more unless you make that appointment...!

[Chubbers in reply to Regalbirdy]

I was told by the whole health practitioner. I'm very confused and not sure I can get anyone to do testing😥 they always tell me it's anxiety or all in my head

[Jacks in reply to Chubbers]

I think we've all been there. It gets rid of you and it's insulting. Listen to the good advice on here and follow the right procedure.

[Chubbers in reply to Jacks]

I have an appt with a gastroenterologist next week! Praying they can help me!!!

[Activity2004 in reply to Chubbers]

Please let us know what the Gastroenterologist says either way. I hope they can help.

[Chubbers in reply to Activity2004]

Saw the Gastroenterologist! I go a week from tomorrow for gastric emptying test. A bit anxious. Supposed to try this diet called FODMAP.

[Penel in reply to Chubbers]

There's a lot of info on here about FODMAPS.

healthunlocked.com/search/f...

[Chubbers in reply to Penel]

Thank you😊

[Regalbirdy in reply to Chubbers]

It may very well be anxiety causing for you. Somehow however, you must pluck up the courage and make the effort to ask this question of your doctor: Can I have a Coeliac blood test please? - Because I have some symptoms that fit the profile.

They might as you fear, say that it's all in your head. If they do, agree with them! Anxiety and depression are symptomatic of having Coeliac Disease! (And I know all about this from personal experience).

Explain that you ALSO have a lactose intolerance (that's very significant); tiredness (also relevant); Vitamin D deficiency and several gastric issues (feel free to add in any previously unmentioned symptoms here).

They may very well refuse; although with the above list it would be unreasonable them to do so (in my opinion) and could possibly give you grounds for making a formal complaint - or asking for a second opinion. Coeliac disease is a multisystem disorder and doesn't just affect the guts. One of my symptoms was something known as 'brain fog.'

Once done, the blood test may well come back as negative. If so, go celebrate! Then play with your diet to your hearts content, knowing that you've been properly checked out.

The Coeliac UK website is worth a look; or Celiac.org is also very good if you would like more info.

Do pick up the phone to make that appointment (and today if possible...!). It could very well turn out to be the best thing you've done for your health in a long time.

[Activity2004 in reply to Regalbirdy]

What if the doctor won't test for celiac? My doctor refused, but let me go on a gluten free diet anyway because I was having severe cramps that wouldn't let me move if I ate anything made with Wheat. As long as I stay away from wheat products, I feel great!

[Regalbirdy in reply to Activity2004]

What if your doctor won't test for Celiac Disease?

Maybe change to a better doctor? - i.e. one who has been educated in the full spectrum of gluten sensitivities?

It's a great shame that you didn't get the support at a time when you needed it most.

I'm glad you feel great now though.

[Activity2004 in reply to Regalbirdy]

Thanks!

[Thurgolady]

It would be best if you can get a diagnosis as then its on your health records but there is no guarantee that you will get a positive result - some research suggests that coeliac disease is end stage disease so you can have it in the earlier stages and it not show up, or you can have non coeliac gluten sensitivity which can cause other damage including gluten ataxia.

Whether you decide to have testing or not (and you could do this privately if you wanted to do that - try Genova Diagnostics) you already know the answer - you feel better when you avoid gluten! Many people do! So far you have only experienced the short term effects of avoiding gluten but if you have coeliac or NCGS then you may well have vitamin and/or mineral deficiencies due to poor absorption of these from food and when these are corrected you could find that your overall health improves. I am so much better for being gluten free - I wouldnt touch the nasty stuff now if you paid me!

And also, it really isnt very difficult being gluten free these days - more and more restaurants are catering for us and more and more products are being produced - including M and S now doing gluten free scotch eggs (these are great) and pork pies (pasty needs work!).

[Chubbers in reply to Thurgolady]

It would be good if I could get someone to test me. I already have low vitamin D. They tested me for that only after I told the dr I tested low when a chiropractor an the test. Well now I'm a bit anxious.

[Thurgolady]

Oh dear, Im sorry you are now anxious but maybe that's a sign that you know you should try to sort it? Its really not something to get anxious about, it could be that its an opportunity for you to improve your health - I presume you are on Health Unlocked as you have some health issues?

Your best option is go to the GP and try to get a referral on so that you will get tested for other vitamin deficiencies but if you have gluten sensitivity then this would likely come right once you get gluten free. Lots of people are low in vitamin D - especially in the north of England and Scotland so this may be due to low sunshine levels rather than gluten.

[Chubbers in reply to Thurgolady]

Yes I have a few health issues mostly hormonal. Also recovering from a car accident. I've had bad anxiety for years! I wonder if the Specialist will test me! And I'm in the middle if the United States so vitamin d deficiency is very common. I don't have health insurance!!!

[Jacks in reply to Chubbers]

Of course the last bit changes everything. So go GF, look at the celiac.com website for food help in the US. It's no help us rattling on about Genius.

Maybe support Obama's health reforms - just my opinion.

[Chubbers in reply to Jacks]

I would love to support Obama's healthcare plan but I cannot afford it at the moment. It's not as affordable to everyone. Thank you for your ideas. Much appreciated 😊

[Thurgolady]

hi Chubbers, it must be difficult if you dont have health insurance. Presumably there is some level of healthcare available to you? As you know you have low vitamin D why dont you take supplements for this - its the vitamin D3 you need. Also take vitamin E in case you're low in this and thats quite cheap and easily available. and maybe a multivitamin/mineral?

I agree that you should go gluten free - it doesnt have to be a difficult or expensive diet as there are many foods that are naturally gluten free and you dont have to replace all the gluten foods - really you get used to not having the cakes and breads and after a couple of weeks you find that you're just not bothered! I think its because there is an opiate like effect with wheat that acts to make us crave it, once the addiction is broken you find the craving is no longer there! This addiction that people are unaware of is the reason lots of people think that they couldnt go gluten free! I cant think of anything really that I miss - there are good versions of most things - I would love a vanilla or cream slice but that's all I can think of!

Put your health first - everything else is secondary to this!

[Chubbers in reply to Thurgolady]

Yes I take D3 supplement. No one has ever mentioned taking vitamin E. I do take a multi. I find dr to see who will take payments or have financial assistance. I am doing the best I can! Thank you 😊

[Thurgolady]

vitamin E is one of the vitamins I was low in and the consultant specifically tested for.

Yes it sounds like you are doing a good job, well done and keep it up!