Celiac disease. What were your symptoms?

[Chocolatteandbiscuits]

I've been to the docs a few times recently. Firstly to check for low iron which i have. First time I was given tablets this time I wasn't. I also went about my ulcers in my mouth. I had a severe one and a big dent in my cheek, it was so painful. I now have another on my tongue. I've felt tired so such a long time and I've had a few issues over some years with my bowel movements. Another thing I noticed is I've been getting heartburn which I never used to get. He did mention today has anyone in my family got this disease, they haven't. But I have this niggle that I need to be checked. What do you think? Did you have any symptoms?

[Chocolatteandbiscuits]

Anyone?

[Schroedingerscatagain]

The symptoms you describe are some of the ones I had, developed much worse overtime and ended up in a wheelchair as a result of misdiagnosis

Ulcers classically are a sign of low folate levels, have you had b12 checked? Take a look at b12d.org which can help you look if you're suffering from pernicious anaemia

Coeliac symptoms truly vary from person to person, both my dc are affected but we all display different symptoms as well as common ones

See your dr and insist on being tested, coeliac U.K. Have good advice and Schar are running a campaign at the moment too to help people recognise the symptoms

[Monkeyinshoes]

Ever since I was a teenager I've been prone to mouth ulcers. Then I started getting swollen, inflamed gums. Dentist couldn't find anything wrong, kept everything clean, no infections etc but I realised they'd be fine at the beginning of the day but would be throbbing by the end, like I was reacting to something I was eating throughout the day.

A few months after that started happening, I had trouble with bowel movements. Tummy cramps, urgency, wind and pain/bleeding when I went. Saw the doctor many times over the next six months. Was prescribed laxatives and creams and told to eat lots of fruit and veg. I felt they were treating the symptoms and not looking for a cause as my diet was fine and I wasn't constipated at all.

I consulted Doctor Google and stumbled across a randomised controlled trial that found a link between bum problems like mine and undiagnosed food intolerances. So I tried cutting out dairy for a few weeks, no effect. Then I cut out gluten and all my symptoms went away. The tummy troubles, pain and bleeding, all gone but also the ulcers and gum inflammation which I hadn't realised might be linked.

I was gluten free for five months before I thought I should try reintroducing it, see if it was just a coincidence. It wasn't. All the symptoms came back worse so I went to the GP again and told them all the above. I was sent for blood tests including the coeliac blood test. I ate gluten for 6 weeks, then went for the test. All my results came back fine. The doctor said I could be intolerant but not coeliac, said I should cut it out again and, if my symptoms go away, I've got my answer.

Well that was almost two years ago, I've been gluten free ever since with no problems except two occasions when I think I was glutened by a supposedly gluten free takeaway.

Though, whilst my coeliac blood test came back "normal" I think it's wrong. There's a large number of false negatives with the blood test as many coeliacs also have IgA deficiency which means they don't make much of the antibody the blood test is looking for. I've since found out the actual number of my test result and it was such a low result they should have suspected IgA deficiency and ran further tests. That didn't happen and now I really don't fancy eating gluten again for 6+ weeks to have further testing.

So that's my symptoms (though symptoms do vary, everyone's different). Go and get tested but, if the blood test result comes back normal, do ask about IgA deficiency and push for a bit more testing. Just to get it properly ruled out so you don't end up with a big-fat-most-likely-false-negative like me.

[WiseDad]

OP. Tired is an understatement I bet. I am not coeliac but have a gluten sensitivity that is extreme and very unpleasant which triggered after a viral illness which gave me CFS as well.

Symptoms include - fatigue so bad you have to lie down anywhere and can't get up - eyesight worsening so you can't see - inability to concentrate on something esp reading as it just won't go in - falling asleep at random times - loss of balance so you can't stand up without leaning on something - some bowel issues as well with diarrhoea and mucus and other such unpleasantness

Gluten free diet is my savour. Went on a restriction diet whilst attempting recovery from CFS and cut out loads and loads. Search online for an allergen restricted diet and stick to it. After a short while I felt better and reintroduced stuff that there was a low probability of allergy as I ate it infrequently. Soy and gluten were out all the time though, even to the point of not having vinegar on chips on Friday as I was tired all weekend.

After six months recovery from CFS was near complete when someone gave me gluten free bread when we went to visit them. Thirty minutes later I was hit by fatigue and dizziness. Turns out it was ordinary bread - I don't eat bread at all but had done so to be polite. Had to sleep on their sofa for nearly three hours then had to take nearly three weeks off work just to recover. Also I used to be sick constantly but have been fit and healthy since I stopped eating gluten.

Warning - if you go gluten free and feel better you won't want to stop but to get a valid diagnosis you have to have been on a gluten continuing diet for at least three months iirc. Monkeyinshoes writes about this above. This is clearly impossible for me so my [private] blood tests come back negative as I have no allergen in my diet.

Just because there is no history doesn't mean you can't have it. Malabsorption of nutrients is a result and you are having the symptoms treated but without any understanding of the cause.

I can't recall the exact tests but anti TTG is one of them and needs to be done before you go gluten free. Ask the doctor for alternative diagnoses that might cause your symptoms and for structured testing to eliminate them, not just allow them to settle on the most common one.

Good luck.

[WiseDad]

Oh and OP - as monkeyinshoes says - if you go GF you can't easily go back as the symptoms and sensitivity get worse. I am hypersensitive now which makes eating out rather worrying and travelling in Asia a nightmare as they don't understand the issue very easily.

[earlyrisingmum]

Thank you, reading your stories has been very helpful. I still have doubts as to weather i do have it or not. As my symptoms don't seem too severe.

Schroedinger wow what a horrible time that must have been! So glad you have a diagnoses now. I'm not sure if i have been checked for B12. I knew i was being checked for iron and haemoglobin levels.

monkey yes i'm the same, oral hygiene is good. No fillings or infections. I couldnt even tell you the last time i had an ulcer before these 2. Thank you for letting me know about the false negative.

wise Yes i feel i had no oomph in me anymore. I used to be very active. I also feel a bit down in the dumps which is probably because i have no energy! Vicious circle! Doesnt sound half as bad as you're fatigue. That must have been horrible! A few years back i went away and had awful stomach cramps/mucus when i went to the loo and felt horrible. I did cut out gluten for a few weeks but then ate it again. However i don't think i gave my body long enough to get it all out of my system. My stomach problems come and go. Has been like this for the past 8 or so years.

[GrumpyOldBag]

My understanding is that coeliac disease can present with a very wide range of symptoms. DS was recently diagnosed. He is 18. No obvious day-to-day symptoms, but episodes of unexplained stomach ache followed by severe vomiting every 2 - 3 months.

However gastroscopy & blood tests confirmed coeliac diagnosis.

He did feel tired a lot too, but that could have bene due to any number of things ...

[MamaBjorn]

Monkey - your symptoms etc are very similar to what I experienced many years ago. After years of painful misdiagnosis and being dismissed by the medical profession it turned out I've got Crohn's Disease. I've found ways of managing the symptoms like you have with elimination diet etc and I'm generally ok now.
It would be worth trying to see a specialist gastroenterologist and get some further testing done.
As said in order to be diagnosed celiac there have to be red flags on your IgE or IgA parameters but you may have severe intollerances that are not IgE mediated ie not flagged and are creating as much problems
Good luck x

[Fixmylife]

Also check for other autoimmune diseases in the family e.g. My sister is type 1 diabetic but I'm coeliac and hypothyroid.

[OvariesForgotHerPassword]

Tiredness, constant anaemia, b12 and foliate deficiencies, IBS symptoms almost constantly, catching every infection going, awful headaches.

Diagnosed coeliac, cut out gluten, symptoms improved immediately. I'm hypersensitive to it now though, the last time I got accidentally glutened I woke up at 1am and didn't get back to sleep until 5am; the entire time was spent on the toilet with horrific burning pain across my entire abdomen (worse than childbirth at times), vomiting and diarrhoea, hellish headache and my immune system went haywire; I picked up the first cold I'd had for almost a year since going gluten free and I'm still not fully recovered six weeks later.

It's definitely worth getting checked out.