Extreme fatigue : Hi everybody this... - Gluten Free Guerr...

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Extreme fatigue

Clarescluck profile image

Hi everybody this site is so helpful. Newly diagnosed with coeliac three weeks ago initially switching to gluten free felt much better but extreme fatigue has returned. It's crippling can't think straight feeling very down. Doc says no vitamin shortage in blood test. Have been extremely strict no processed food separate toaster etc. Will it get better I need hope. Had no other symptoms. Thank you in advance.

10 Replies

Hi Clarescluck,

Please ask for a print out or access to you blood results. Did they take iron, folate, vitamin B12, vitamin D and calcium.

When they say ‘normal’ don’t believe them. We all are different, need different levels. So, get access to them. Apart from fatigue anything else ? State of nails, hair ?

Best wishes

Thank you for replying. No other symptons apart from gut and throat burning which has stopped since switching diet. Will ask doc again but said all was normal??? This fatique is deadly though can't seem to find anyone else suffering like this since switching.

Hi Clarescluck,

I have to second what Narwhal10 has recommended re getting hold of your blood test results, either ask receptionist (not GP) to print copies, or get online access. Normal usually means 'in range'. However, you may find some/all of your results borderline low........

I'm approx 18 months post dx, and I am still suffering from some fatigue I'm afraid. It has improved, but I don't feel fully well yet............I'm hopeful though. 😊

Will definitely ring reception Tuesday. Sorry to hear your struggling too. Were you borderline? Do you take any supplements. I asked the doc if I needed any he said no. I shall see what the results are. Didn't expect to feel so awful.

I felt very tired at first going on GF diet too. I also felt dizzy at times and had headaches. All the symptoms got better in time stick with it I also have Coeliac.

Hi Clarescluck, just wondering if your home is completely gluten free. When I went gluten free I saw an initial improvement then keep feeling achy and extreme fatigue. Other people in my house where still eating gluten so I was getting cross contamination which no doctor ever seems to tell you about. Mine didn’t even think it was possible to be that sensitive but I am, the slightest crumb sets me off. Sharing a toaster or the butter was making me sick. Good luck with everything

Yes bought separate toaster utensils/ butter straight away. Use gluten free for family when possible and cook from scratch. I know even inhaling normal flour can be damaging. Checked makeup tooth paste etc. Lol. Lot of label reading. Thanks for replying so helpful..

As Narwhal10 states, and resounding agreeance from others, yes, get a copy of your blood tests. The testing print-out normally shows what the normal range is 'to' and 'from'. I've been told a lot of things over the years were 'ok' in terms of test results, but they were in the low/dodgy range. I think the NHS just simply works to the lowest common denominator of what it means to just be basically alive and staying this side of death, rather than aiming for optimum health and wellbeing! What you may find also is coeliac has led to other food intolerances and they may also be impacting energy, e.g. dairy, non-gluten grains, etc. If I eat bananas I end up feeling very congested, then following day feel like I've a major hangover with tiredness and brain fog. Your body is still readjusting so give it time. Other issues that arise with destabilised gut health is the wrong bacteria (SIBO) or candida overgrowth - NHS seldom refers to SIBO, and never to candida overgrowth in gut, so might be a case of researching and educating yourself, which is sadly the route many end up going.

I agree with all the others saying you must always ask for print outs of all your test results, with their reference ranges. EVERYTHING, including vitamins and minerals. Many/most drs say they're 'normal' or 'in range' when in fact they might be at the bottom of the range, or they just not the optimal level where you function best.

Ask reception for print outs. You're legally entitled to them and they are free.

You should be able to access all of them online from your surgery, but many surgeries are way behind complying with that ruling

As you've been diagnosed coeliac (an auto immune condition), you may have or develop another autoimmune one. Has your dr tested you for thyroid disease? It's common, and can make you feel extremely fatigued. Ask for a full thyroid panel of tests: T4, T3, TSH and thyroid antibodies. When you've got the results, post on Thyroid UK Health Unlocked. The admins and members there are fantastic. See you on there!

healthunlocked.com/thyroiduk

Thank you. Just to add was diagnosed with undersacrive thyroid four years ago and tested since regularly and levels are still good.didn't have symptoms for that so a shock. Did think when I went to doc that this new level of tiredness starting two months ago was caused by thyroid levels and he would up my meds. But no it was coeliac. Too tired to even drive at mo. I know my gut will take a long time to heal. Doc said waiting list for endoscope is very long.

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