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Avatar universal

Does this sound like celiac disease? Desperate for help!

I've been suffering with unexplained weight loss this year, first noticed in May but never weighed myself before then so might have been losing weight for some time.
The past few weeks I have had stomach aches and discomfort, mainly after eating, also feeling sick as though I'm starving and haven't eaten all day - even if I have been eating properly. I get this sick feeling both after eating and any other time in the day. When I inhale it hurts my chest/stomach (left sided pain). Burping relieves it for a bit, like for a few minutes, then it comes back and eventually it goes. Also when I get this straight after eating, I often feel short of breath/like I cant get enough air and need to take a deep breath, and it eventually goes. Sitting up straight makes it worse and makes my stomach/abdomen hurt/feel uncomfortable (only when I get this sick feeling etc straight after eating).
Lower left abdominal pain which is related to the bowel etc I believe, as it's the pain you get occassionally when you need to go/haven't gone in a while. I seem to have it most of the time, just a general discomfort, and often it hurts, it's a sharp stabby pain. More gas down there than usual! Again, "releasing" the gas shall we say seems to relieve the discomfort/bloating for a bit then eventually it dies down.
My appetite is fluctuating like mad. The other day I was so hungry and I just couldn't stop eating. Then the next day (yesterday) I was hardly hungry at all, felt hungriest at night time. Felt very hungry actually, but the moment I started eating it just went!
I keep getting mouth ulcers which is very unlike me. I got one in mid October and it went then straight away another one appeared...then went, then straight away got another...then it stopped. About a week ago I got one again...and it went and then a new one developed and I have it right now. They always seem to be on my gum/inside of my lip. They only last a few days but are painful and like I said, when one goes another appears straight away. As far as I'm aware my dental hygiene, etc is fine so it's not that.
I can hardly sleep. I never feel tired until the early hours of the morning. Quite often I stay awake all night and then just get up!
I sometimes get headaches that only hurt when I shake/move my head. When I'm not shaking or moving it, it still feels uncomfortable. I keep myself well hydrated, usually drink plain water or squash. I do drink tea everyday and I know caffeine dehydrates you but I only have about 2-3 a day. And other drinks too so I don't think it's dehydration.
Sometimes I get an extremely dry mouth and feel fatigued but this isn't as often as the other symtpoms.
I often get this lump in my neck where my adams apple is, but usually it does not stick out or I cannot feel it if i rub my hands up and down my neck. When it appears, it lasts for a day and hurts to touch and I feel it when I talk or swallow food. The last few times it's appeared it has lasted longer (a few days to a week) and I've felt it more when eating talking etc. I got it again recently and it has lasted a week or 2, but the pain went within a few days. It's about 1-2cm diameter.
My spots/acne has come back over the past few weeks and its quite itchy. On my back and shoulders and chest. I'm on the mini Pill and it can cause acne, but I started vitamin supplements a few months ago and the acne cleared up. I still take the supplements and not changed my pill etc so they seem to have come back for no reason.
The other day (the day I felt starving) I had pasta for dinner and snacks later on that contained gluten. The next day (yesterday) I didn't feel that hungry and thats also when a new ulcer appeared. I felt strange when I was out (although it was stressful and busy cos of xmas) and just "funny" later on when we got home. Had a very dry mouth. In the morning I had a lot of nasty smelling gas down below! Had a bowel movement which was looser than usual but nothing abnormal, it was solid, bum was very sore (like when you've had diarrhoea). Went again in the afternoon (and I usually only go once a day) and it was normal. Felt odd in the evening, almost down/depressed feelings for no reason.
Similar things happened last week: had pasta for dinner, within a few hours I had a pain in my inside lip/gum area and it soon came out as an ulcer. The next day I had cereal and felt sick and nasty afterwards. For the rest of the day I had no appetite and ate nothing.
There was also one time recently where I had some chicken soup and French bread, got about halfway through and suddenly came over extremely tired and very sick, I fell asleep and had to leave the rest of it!

I've also had rapid heart rate since January, not palpitations, just my heart rate going faster than usual and it often speeds up like i've been exercising even if I haven't done anything!

I've been to the doctor about the heart rate and weight loss, got thyoid checked, full blood count, ESR, electrolytes, creatinine and urea, liver and kidney function all checked and the results were perfectly fine. Potassium is slightly low but by a fraction so nothing to worry about.
I take vitamin/mineral supplements daily too so I'm getting the nutrients etc I need. I could do better with fruit and veg 5 a day but in general I eat healthily and balanced diet, probably better than most people my age!

I went back to docs about stomach pains etc and she said it might be acid problems, gave me some tablets. I haven't tried them yet as the pains seemed to disappear - typical! Also, because I never feel tired at night until the early hours of the morning, if I fall asleep I won't wake up until the afternoon and you have to take these acid tablets 30 mins before food. But the first thing I try to do if I get up late is eat (because I'm trying to put weight back on because I've gotten so underweight). So I can't wait around half an hour. I know that sounds bad and I will try them because I want to see if they help, and if it's not acid-related they won't do any harm (so the doctor said). I keep forgetting too!
10 Responses
Avatar universal
Just to add - I'm female and 19 years old.
Avatar universal
Did your Dr test your thyroid?

It could be celiac, but your sleeplessness and sore neck make me think hyperthyroid should be ruled out.
967320 tn?1333199708
What were your exact results of the thyroid tests? It sounds like a thyroid issue to me too.
Avatar universal
Thank you for your replies.

My thyroid results were fine, bang in the middle. All my blood tests I had done came back fine. I also had an ECG and it didn't show anything (apart from my heart rate being fast which we already knew about).

Also the doctor felt my neck in order to check my thyroid and they couldn't feel anything. The lump is higher up than where the thyroid is as well but like I said, they checked my thyroid and it was fine and the blood tests were bang in the middle of the range.
It really did seem like a thyroid problem and I was so sure that's what it would be, but if the blood tests came back normal then it can't be a thyroid problem (I asked the doctor and they said it would be very unlikely for the result to be false).

Thinking about it - my potassium levels being low is possibly another celiac symptom - because it causes malnutrition.
I don't think the vitamin supplements are being absorbed, because my spots have come back - and it was the vitamins that cleared them up and did my skin good!

Something else I thought I'd mention - my urine has been odd as well. It's very clear as though I have drunk lots of water. But there have been days where I have drunk little and still had clear-ish urine. I know this is healthy but if my body is peeing out water that I haven't even taken in...surely that's not right? I did a sample for the doc, nohing showed up. I'm not peeing more than usual and not feeling thirstier than usual (although as I already mentioned I somtimes get an extremely dry mouth for no reason). So don't think it's blood sugar or anything.
Also it often has bits floating in it or what looks like an oily substance floating on top (another reason I did a sample).

1156949 tn?1262444544
Celiac disease is very difficult to be diagnosed,just 3 months keep gluten free diet to see what is happening.  
Avatar universal
A lot of your symptoms could very well be Celiac Disease.  Everyone has different symptoms which makes it difficult for doctor's to diagnose in addition to many doctors not knowing very much about Celiac Disease or how to even diagnose it.  The only way for a doctor to diagnose you for Celiac is through a biopsy since the blood tests can be a false negative or a false positive.  I was diagnosed March 09.  Once I went gluten free my daily headaches and sometimes migraines went away.  I was on medication for anxiety (racing heartbeat etc...had even been to ER and they thought I was having a heart attack - another thing for me caused by celiac) I am now now longer on anxiety medication which is from my gluten free lifestyle now....I also would have different aches and pains all over my body...felt like crap....once I went gluten free all were gone in about a week.  Everyone is different but the key is getting the correct diagnosis and educating yourself as much as possible about Celiac and how to make sure that they are running the right tests to ensure a correct diagnosis.  Also, another indicator is if your "poop" floats then your body is not getting the nutrients it needs because they are not being ingested.
Hope this helps!  
Avatar universal
Thanks for your reply!

I've read lots about it and so much of it makes sense - mainly the fact that everyone experiences it differently so the symptoms could be any combination.
I'm concerned that my GP may not agree so I will note down all my symptoms and make it clear that they are not caused by anything else that I know of.
I will also say I've done a lot of research and know that it can be difficult to diagnose and be recognised...but I don't want to come across as rude, or make her think that I don't think she'll understand.

Also, because I've "suffered" so many symptoms for nearly a year now, I obviously mention it to family etc but it's got to the point where they just get fed up with me =( tell me I'm paranoid and I just need to eat more etc.
The only thing that has improved is my heart rate, and it's since me and my boyfriend split up! So that suggests it was probably caused by stress and anxiety.
But I seem to get anxious etc over little things - which again, I've read could be a celiac symptom.

So I'm kind of stuck - with support from family things will be easier for me. I often feel nervous/anxious at the doctors, especially as I'm always going and complaining about more symptoms! But if ever my mum has gone with me and helped me explain things, it's been so much better.
Not that she or any family don't care at all/any more. It's just they've got tired of me talking about my health and what I've read on the internet etc.
I just need to find the right moment, when my mum isn't busy or stressed (which she often is as she suffers from depression).
That's another thing - she's suffered with depression and insomnia for years, and IBS too. She wasn't tested for celiac so her IBS could actually be celiac, which could explain the insomnia and depression and tiredness she gets. So I don't just want to tell her about myself - I want to tell her that I think she should be tested. Cos also, it's scary when you read about people who don't get tested and sometimes, when it's been going on for a long time, they get cancer etc =(

I'm hopefully going to the doctors this week and hopefully it'll go well and people will understand.

BTW I've also started getting clammy and icey cold hands and feet (one time the soles of my feet turned blue-black, like they were covered in dirt!), and a lump in my upper left abdomen (under my rib cage). It's under my skin as though it's inside me.

I've had a "funny" head which started two days ago. I call it funny because it doesn't "properly" hurt; not until I shake my head, then it really hurts! But when I'm not shaking my head, I can still sort of feel the pain.
Anyway, two days ago was also when I ate pasta for dinner. And I had it again last night too. I partly did it on purpose to see what happened. Now I wish I hadn't =(

Thanks again to everyone for their replies =) Keep them coming, as I'm still curious to hear what others experienced!
Avatar universal
hi definately. get tested for celiac, get a blood test done, i have had it for a year now, and like you had all your syptoms, and lost 2 stone in weight, have been gluten free, and feeling alot better, you will feel anxious because you are worrying about your health all the time, you will have to have the camera down to confirm it also, but it will put your mind at rest, xx
Avatar universal
I think people react to pasta the worst because it's made from the most difficult wheat to digest. I know it made my stomach ache all night and gas and IBS..yuk!  Also gluten if I accidentally eat it, will give me insomnia and keep me up ALL NIGHT! ugh!
Avatar universal
Oh yeah, forgot to mention, when i get "glutened" it will peel my lips and the inside of my mouth! i know right away that I accidentally ate it!
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