I’m just so tired (coeliac)

[Spedder]

I was 25 when I was diagnosed with coeliac disease. I was suffering from exhaustion, anaemia and fainting. In the 10 years since starting a gluten free diet the anaemia has resolved but I’m still so tired.

Before I became ill I worked full time, but around the time of diagnosis I struggled to cope with my job and fell asleep or fainted at work numerous times, resulting in me getting sacked. Then I lived on my (house deposit) savings for a year and basically slept all day. When the money ran out I took a part time job and depending on my hours would have a lie-in before work or a nap afterwards. I was on the poverty line earning 10k per year and barely eating because I couldn’t afford food, but I was just too tired to cope with a full time job.

I got married and when I had DS I struggled to cope. I had virtually no support and I was constantly angry and hysterical due to exhaustion. I once attacked a doorstep salesman because I was finally asleep and he woke me up. At one point I tried to give DS to social services because I was too tired to cope but my husband wouldn’t let me. As DS got older (2-3) I would often doze off on his bed while he played with toys or watched tv beside me.

DS is 4 now and at school. I get 8hrs sleep and get up at 7 to drop him off but I regularly go home and sleep for another 2-3 hours. I have no energy and struggle to concentrate. I find it hard to do housework because my body feels too tired to move. If I’m asleep and someone wakes me up I get angry and sometimes violent.

The doctor says a gluten free diet resolves coeliac related tiredness, and I’m strict with my diet. All my bloods are normal. Basically the doctor has said there’s nothing wrong with you, go away. My condition isn’t defined as a disability so I can’t get any support. But I’m so tired and it’s ruining my life.

What bloods did they check?
I know a few coeliac people who have B12 injections, despite being careful with their diet. Are you vegan/vegetarian? That can contribute to low B12.
Vitamin D -not often tested as it’s an expensive test, can also cause exhaustion.
Many people don’t feel well unless their B12, Vitamin D & Ferritin levels are in the upper range of normal. Women are frequently having to drag themselves around at low levels of normal because Drs see ‘normal’ on the lab report and dismiss how we are feeling. Have they checked thyroid? Again, you can be symptomatic at the lower end of normal.
Can you get a print out of your blood test results from the surgery which also shows the lab reference ranges? There are lots of knowledgeable people on MN who may be able to interpret them for you and offer advice.

Is there another GP you could speak to?
It sounds difficult, I hope you get some answers soon

I’d look around on coeliac groups for specialist advice.

Could you be suffering from cross contamination? Do you use the same pans, wooden spoons? Do you share butter, or the toaster? Etc.

The house is gluten free apart from pre-wrapped biscuits and snacks that other family members eat. I don’t cook anything containing gluten.

Honestly I don’t know what bloods they check. They just do “a checkup” and then tell me my results are normal. Sometimes they give me iron tablets. My checkup is due shortly so I’ll ask for a copy of the results.

Good advice above about B12, ferritin and vitamin D levels. I'd do some research as to what normal ranges are and then check your exact results against those.

I'd also be asking for a full thyroid check as once you have one autoimmune disorder you're much more likely to be diagnosed with another. Do research thyroid levels and check your results as there are lots of tales of people being fobbed off with 'your results are fine' when they're very low end of normal. I think there are two levels to be looked at with thyroid but can't remember off the top of my head.

Hi @Spedder, just wanted to echo the vitamin d suggestion - I’ve had gastric issues this year and did a private blood test. It showed my vit d as rock bottom and everything else fine. Because summer was around the corner I didn’t take a supplement thinking sunshine would sort me out. I became weaker & weaker….eventually, I started taking vit d - I felt significantly stronger in 10 days. 5 weeks later I’m still not fully better but I am really improving. Get yourself a vit d & k multivit- it’s worth a try!!

Ask for a referral to a rheumatologist. Dd is coeliac and as it’s an auto immune illness it means you’re more likely to have others. Dd has since being diagnosed with 3 other autoimmune illnesses.

My sister is coeliac and also had some serious autoimmune thyroid stuff.

Get your folic acid tested as well xx

Look at refractory coeliac disease Dc has this with similar symptoms.
Also was referred to immunology for ruling out of other disorders.
You don't need a diagnosis to claim personal independence payments and its also not means tested.

I'd echo pps, get ferritin, folate, B12 and D checked and don't just accept it if they say it's normal. Come back here and let us know your results so we can help more.

All of my levels are low and I feel like shit. Unfortunately I'm having to go private to get it sorted.

Yes, previous posters are right, low levels of vitamins don't get flagged out, only something excessive, a Dr told me that when I queried my DS's borderline low results in the past.

U need to work through the details one by one and see what needs supplementing.

I'm coeliac, and have previously had folate anaemia. But if they sometimes give you iron tablets, then obviously everything isn't normal and you are repeatedly getting anaemic enough for them to action it - and thats enough to make you feel awful even being at the low end of normal.

B@Spedder how are you now ? Xx