coeliac disease

[Doryyy]

Hi I am 22, I was diagnosed with coeliac disease when i was 19. Since this I have followed a very strict gluten free diet. I have noticed an improvement in pain as before following this diet I would be feel sore a lot around my stomach area. However I had a small improvement in my tiredness I still feel as tired from before being GF. I have contacted my doctor in april 2021 about this, and they have requested full blood counts, everything came back as normal apart from my white cells they are low. they requested more blood tests and they have been low 4 times in a row, when they told me they casually dropped in that they have been boarder line low since I was 13. I am wondering if anyone else with coeliac disease is experiencing this. I also experience regularly nose bleeds maybe on average about 5 times a month. Some cases 3 times a week at times I will wake up with a small nose bleed, they usually last 5 mins max. However in May 2021 I experienced a nose bleed that lasted 40mins and I did not realise i should of went to A&E. I contacted my doctor a few hours after and they booked me in for bloods I requested for platelets to be checked and they came back fine. I personally feel as if I have another underlying health condition. Since September 2021 I have been experiencing bladder issues with dark urine first thing in the morning and having to pee a lot throughout the day, its as I need pee and all of sudden I am running to the toilet as I can hardly hold it in. I have been increasing my water intake as darker pee is a sign of dehydration but it does not seem to make a difference. I do feel very thirsty a lot and I constantly wake up with a white tongue. On Monday I got another full blood count test and diabetes test, I rang today and the GPs receptionist said they all came back clear, however the doctor would like another full blood count test in 2 weeks I then asked if my white cells were low and they said yes. As well I left a urine sample up with my GP on Monday and today they said that was clear too so I do not know what is going on with my health. If any other coeliac experiences the same let me know please.

[Penel]

Hi Doryyy

You seems to be having a really rough time! It must be a worry to you.

Sorry I can’t help much. I’ve not experienced any of your problems except for the white tongue, which was a symptom of thrush.

Perhaps your doctor should be referring you to a specialist? ENT for persistent nose bleeds?

Good luck with sorting this out.

[Doryyy in reply to Penel]

Thanks for responding

[Cooper27]

I'd find out what your actual result numbers are - most pundits say that the doctor testing ranges are a little too generous. Plus if a vitamin D deficiency is defined as <25nmol, you won't experience a sudden light switch of symptoms if your result drops from 25.1 to 24.9, you'll probably feel the same amount of rubbish.

You should probably look into taking some supplements at home to top up. Most say you'll feel best with Vitamin D around 100, B12, Ferritin and Folate in the upper half of the range. Hopefully that will make a some difference at least.

[Doryyy in reply to Cooper27]

Thanks for responding I will keep that in mind about the numbers when I next ring

[nellie237]

Hi Doryyy,

I'm sorry I can't be very helpful as I haven't had any problems like yours. I have found Labtestsonline a good place to start for indicators on where to think about looking.

A decreased WBC count is called leucopenia. It can result from many different situations, such as

medication, especially chemotherapy, or radiotherapy

bone marrow disorder

vitamin deficiency, such as B12 or folic acid

liver disease

an enlarged spleen

occasionally in inflammatory conditions such as rheumatoid arthritis or SLE

some infections (particularly viral infections)

diseases of the immune system

A count of 3.0–4.0x109/L cells would be considered mild leucopenia.

I'm guessing that your GP has already tested B12 & folic acid. Enlarged spleen has a well known link with coeliac, but if you're not picking up infections all the time...........

I wish you all the best in finding the answer, and please let us know how you get on.

🤗

I agree with Cooper 27 that it is very important to get results with ranges.

[HowNowWhatNow]

Agree, sounds likely it is not connected to being coeliac. Having said which, these could be symptoms of another AI condition, which you being coeliac shows you have a disposition to.

Or of something else. I’m on my way to the final test for something called Sjögren’s - which also causes extreme thirst and mouth issues. But what you have could be any number of things and it’s up to the GP to be in charge of your care and tell you who you need to see now, guided by your low white blood cells.

[Eileen_K]

I'm sorry Doryyy I can't be very helpful as I haven't had any problems like yours