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HyperGirl

Newbie Here! Does This Sound Like A Gluten Intolerance?

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Hey all!

I'm hoping you guys can help me out.

I'm 19, female, in the UK. I've not had the best year due to being unemployed, but also due to some health issues. Sometimes I think maybe I'm being paranoid and family members get annoyed with me everytime I mention a health issue.

But then sometimes I think "This is not like me and it is affecting me!"

The past few weeks I have developed:

Feeling sick after eating sometimes. Along with tiredness. Or feeling full very quickly.

Left-sided upper abdominal pain after eating but also at other times.

Gas/bloating after eating. At both ends :P

Lower left pain which I call" the poo pain" as the only time I have had it before is when I've not gone for a while and needed to go. But I seem to have the pain everyday, sharp, stabbing pain. It seems to be relieved with "going" but I still always have a minor pain/general discomfort there.

Appetite fluctuations.

Spots/acne have returned =( on my face, shoulders, chest and back.

I also have the following, which developed a few months ago:

Sleep disturbances (never feeling tired at night, or waking up numerous times throughout the night). This is unlike me, I always used to be able to fall asleep within minutes, even seconds! And sleep deeply and soundly throughout the night.

Mouth ulcers, again this is unlike me. In October I got one, then it went but another one came along in a dfferent spot...etc etc then they stopped. Had one appear again a few days ago and it's now gone...but whether more continue to appear will remain to be seen.

Urine changes - cloudy urine but no other infection symptoms. Then it went after a week or two...and instead I have very diluted urine with bits in it/looked like something was floating on top, like when oil floats on water. Had urine test had docs and it was fine. =\ It seems to be nornal again now though.

My sweat seems to smell different, it's a really awful smell! I can't explain it but it's horrid!

I'm also underweight, it was first noticed by my mum in May this year. Weighed myself and I had lost 5 pounds, continued to lose weight. It was unintentional weight loss.

Had rapid heart rate since January this year, not palpitations though. It is just faster than usual and every day I would have moments where it would speed up as though I had been exercising but I hadn't! Although I have also had palpitations, but only occassionally and only lasting a few seconds.

Also developed feelings of not being able to get enough air and like I have to take a deep breath. But taking a deep breath doesn't "satisfy" it, I have to wait until the feeling goes.

I also get this after I eat sometimes, when I feel sick/full after eating. And it feels uncomfortable to sit up straight, makes my abdomen hurt and harder to breathe.

I went to my doctor in September about the weight loss and heart rate, had blood tests for:

Thyroid

Kidney and liver fucntion

Urea, creatinine and electrlytes.

ESR

Full blood count

All came back fine although my potassium levels are slightly low, but only by a fraction and nothing to worry about.

I had an ECG and it was fine apart from my heart rate being too fast. So I'm having a 24 hour ECG in a few weeks.

I also have headaches where it doesn't really hurt, but when I shake my head it is excrutiating pain! I only have them sometimes and thr trouble with headaches is there are so many things that can cause them...so it could be anything.

Every so often I get this lump in my neck roughly where my larynx is. It used to last a day, and I would feel it when I swallowed, sometimes it would hurt a little. When I pressed on it, even gently, it would hurt. I would run my finger up and down my neck and clearly feel it sticking out. It is not normally there (yet people keep telling me it's just my adam's apple!). It seems to get worse every time I get it. The last few times it's appeared, it has lasted a few days, even up to a week, and hurt more. I have it right now in fact, it's been there about a week, maybe more? But the pain has gone...but it's still there, about 1cm in diameter.

I think it's probably just a gland...glands swell up when fighting infection or when something is "wrong". But whenever I get them, nothing is wrong that I know of!

My mum has IBS but she oten feels sick after eating bread and I know that IBS patients can be misdiagnosed and actually have a gluten intolerance. She says she wasn't tested for intolerance, they just diagnosed her IBS based on the symptoms.

I went to my doctor the day before yesterday, mentioned the abdominal issues and she said it sounded like an acid problem so she's given me tablets. I haven't taken any yet as you have to take them 30 mins before eating and because of my sleep problems, I always wake up in the afternoon (I eventually get tired at about 5-6am) and the first thing I do is eat because I'm so hungry.

She said an intolerance would affect the lower/bowel area more so I mentioned the "poo pain" too but maybe she didn't really take it in? I know I haven't had issues with bowel movements and that is common is gluten intolerance patients...but I've read that everyone is different and they may not have those symtpoms! Some do not have any symptoms apparently.

I've got to go back in a month and let her know how the tablets are doing. And if anything gets worse/changes I will obviously go back sooner.

So, does any of this sound like a gluten intoerance? It was something that always came up as a cause for weight loss when I looked it up months ago but I never thought about it because I assumed I would have other symptoms, like diarrhoea and stuff :P

I don't want to sound like I am over-reacitng either. Obviously a rapid heart rate wouldn't be anything to do with it. But the weight loss is really not good and the pains and discomfort don't help me wanting to eat. And as I said I've had general appetite fluctuations on top of that. The other day, I felt really sick after eating cereal (Coco Pops)...but I eat that same cereal everyday and don't always feel sick? Anyway, it made me feel really awful and the rest of the day I had NO appetite at all! And on other days I am constantly hungry!

I'm not saying my doctor is wrong - maybe it is just an acid problem. But do acid problems cause lower/bowel related pains? And appetite problems?

And the spots/acne - I had them appear in February and put it down to the mini-Pill I had changed to. Started taking vitamin/mineral supplements a few months ago and it really helped! I was so pleased! But they've come back over the past few weeks for no reason. If it's due to my sleep issues - then I need to know what is causing the sleep issues and I've heard gluten can cause this. Or could it be a reaction? Or is it caused by the damage an intolerance does, meaning my body is no longer absorbing them, meaning my skin isn't getting the goodness and therefore breaking out in spots!

I probably DO sound really paraniod! But I've got an open-mind, I'm trying not to jump to conclusions or self-diagnose. I am only desperate for an answer and hopefully an end and to return to normal! :)

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Anyone? :(

Just an update:

EVERY time I have eaten pasta I get symptoms. Sometimes I feel sick and full and just really unwell and tired, about an hour os so afterwards approx. Or I get headaches, again about an hour or so afterwards, maybe less maybe more.

Yesterday when I had some, an hour or so afterwards, I felt light-headed and not with it...and my head felt nasty. I didn't have what I call a "normal" headahce, and by that I mean it wasn't a defninite pain. It was a very mild pain...but at the same time, very painful! And it worsens when I shake my head. It's as though the pain is there but it only really comes out when my head shakes?

Two times I ate pasta recently a mouth ulcer appeared. The first time it appeared a few hours later. The second time, it appeared the next day (just as the first ulcer had healed up!).

I had McDonalds the other day and was nice and full afterwards, as you should be. And yes it is greasy food and stuff like that can make you feel a bit "yucky". But I felt fine at first, just full-up, or as I call it, "stuffed". Then I soon felt really sick like I get with pasta. And then really tired and just...horrible :(

I had a quarter pounder with cheese, fries and a strawberry milkshake. According to their website, the burger contains gluten but the fries and milkshake don't.

Because of my appetite fluctuations, I don't often have sandwiches at lunch so I can't say if I get the same with bread. Although one time when I had chicken soup and French bread, I got the sickness and tiredness afterwards, fell asleep whilst eating it!

If I eat small amounts of things with gluten I don't seem to get symptoms. For example, I can eat a few cookies and feel fine. Well I don't get the same noticeable symptoms at least.

I'm going to my doctor tomorrow hopefully. Because I've also started getting clammy, cold hands and feet and yesterday when I was on the toilet, I noticed my legs/knees had gone blue-black!! And I looked at my feet and the soles were the same and they were ice cold. Not sure if this could be related to celiac (if that's what I've got) or something else.

And last night, I noticed a lump in my upper left abdomen, under my ribs. Basically around where the stomach is I think. It moves when I breathe (it moves "up" when I breathe in and "down" when I breathe out) but the lump isn't moveable and it's underneath my skin as though it's inside my body. It sort of stings when I touch it sometimes. It doesn't stick out but it is easily felt.

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Hi, Hyper Girl. Sorry no one responded to your previous post. Welcome to the forum.

Of course no one can tell from a forum post whether or not you have celiac disease or gluten intolerance. There are certainly many of your symptoms which would point in that direction, and with a mother diagnosed with IBS and never tested, it is possibly one or the other inherited from her.

I think you should definitely ask your doctor tomorrow to order the celiac blood test panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

to at least rule out celiac disease (although it would not rule out gluten sensitivity/intolerance which does not show up on the test). If she asks you why, I would have with me a printed out copy of your post with the parts highlighted which are specific indicators of celiac disease, including the fullness, bloating, palpitations, weight loss, headdaches, mouth ulcers, family history of IBS, etc. Of course, don't neglect to mention your other problems too tomorrow. Good luck with your appointment and let us know how it went.

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Hi, Hyper Girl. Sorry no one responded to your previous post. Welcome to the forum.

Of course no one can tell from a forum post whether or not you have celiac disease or gluten intolerance. There are certainly many of your symptoms which would point in that direction, and with a mother diagnosed with IBS and never tested, it is possibly one or the other inherited from her.

I think you should definitely ask your doctor tomorrow to order the celiac blood test panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

to at least rule out celiac disease (although it would not rule out gluten sensitivity/intolerance which does not show up on the test). If she asks you why, I would have with me a printed out copy of your post with the parts highlighted which are specific indicators of celiac disease, including the fullness, bloating, palpitations, weight loss, headdaches, mouth ulcers, family history of IBS, etc. Of course, don't neglect to mention your other problems too tomorrow. Good luck with your appointment and let us know how it went.

Thanks :)

I don't think I was clear enough last time I saw the doctor, and since I've been I've picked up on things such as food triggers, so hopefully tomorrow will be successful.

I'll make sure I write things down from my posts and take it with me!

Also my cousin (on my mum's side) has very similar issues such as weight loss, fast heart rate, changing appetite, but she also has constipation and tiredness. Like me, she's been to the doctor countless times and had blood tests but not got any answers. However I don't know if she's been tested for celiac. So for all I know, it could explain her symptoms too!

I really want to talk to my mum about it properly rather than just briefly mention my symptoms and what I've read on the internet, which is what I've done before and it's just annoyed her. Because I think she should be tested too, seeing as she has IBS and wasn't tested for celiac. Plus, she's suffered from headahces/migraines, tiredness, insomnia and depression for years. Plus the IBS symptoms (which mimic celiac)...I can't help but wonder if all these things she suffers from are just seperate things or actually being caused by celiac.

She's always busy or stressed though, so it's hard to find the right time to talk to her. I mean, she does care about me and my health, and her own health...but it's just hard for her to take things in because of stress etc.

Maybe I should mention that to the doctor too...or get my mum to come with me? At the end of the day, I just want to get back to normal and I'd love my mum to be free of her problems just as much. But whenever I talk and it's about something important or I'm nervous, it just goes wrong and people get the wrong idea and I miss the main parts...so they just think I'm over-reacting or being paranoid :(

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I don't think I was clear enough last time I saw the doctor, and since I've been I've picked up on things such as food triggers, so hopefully tomorrow will be successful.

I'll make sure I write things down from my posts and take it with me!

...

But whenever I talk and it's about something important or I'm nervous, it just goes wrong and people get the wrong idea and I miss the main parts...so they just think I'm over-reacting or being paranoid :(

Yes, it is always a good idea to go to the doctor with a list of things. Otherwise they divert you off on to their own tangential thinking and you lose track of where you were going. With a list you can bring them back by saying, "Yes, but what about_________ which is what I came to see you for".

It would also be a good way to talk to your mom. Invite her out for a cup of coffee and explain to her what you have and compare with what she has and that way she may see some correlation. If you are going to be tested, I would wait until after that though.

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Well I went to my doctor today :)

I told them everything and mentioned what I had read about celiac and the symptoms differing from person to person, not always being severe, etc. She said I had a good point :D

So I'm having blood tests next week! For celiac, bone profile, and they're also re-checking the others I had previously (which I mentioned in my first post).

I was so relieved afterwards! But now I'm feeling kinda scared/depressed/sad about it. Like all the changes I'd have to make my diet if I do have it, the things I won't be able to eat...feel kinda sorry for myself :(

But deep down I do want to get myself back to normal and if celiac turns out to be the answer to all my problems, I will be relieved that finally I have an answer and can start making the changes to get better.

For now I'm going to stay positive and enjoy the heavy snow here in the UK which hasn't happened for 30 years :P

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Just an update:

Had the blood tests and got the results the other day. They said everything was normal.

:( What do I do now?

Also I've heard that before the test you're supposed to eat 3 slices of bread or the equivalent every day...but is that only if you've been gluten free for a while? I haven't been gluten free at all and I ate it pretty much everyday. But should I have eaten extra to get a more relaible result?

Also, the fact that I had a small bit of gluten 20 mins before the test, then before then the last I ate was 12 hours before...would that affect the results?

I'm not convinced but I know the blood test can give a lot of false negatives. I don't want to annoy my GP or sound like a know-it-all but I want to do the test again making sure I eat sooner than 12 hours before (but not as soon as 20 minutes). If how soon before the test you eat gluten affects the results.

I don't know the exact levels of the test results as I haven't been back to my GP yet. I'll go in a few weeks for something seperate anyway so I will ask then.

I think I also need to make it clear that the symptoms are not just IBS like symptoms, there is no way I am going to be diagnosed with that "condition". As far as I know, headaches, mouth ulcers and odd emotions are not related to IBS! I am also getting a swollen/bloated tummy after eating gluten. I wasn't sure at first if it was just the thing you get at night, so I kept an eye out...and I got it during the day and in the morning after eating gluten.

I guess I should check to see if I get after eating something that is gluten free. I've just eaten some rice and it looks kinda big but I had a sandwich earlier so it might still be from that.

Plus from what I've read, IBS should be diagnosed after everthing else has been ruled out but ALSO there is some criteria, and it says there has to be a change in stools. Well I'm fine in that area!

But either way, the symptoms from gluten are, as I said, not all "tummy" symptoms. I get headaches, mouth ulcers/sore mouth, feel tired sometimes, if not I am hyperactive. I can't sleep unless I stay pull an all nighter, so that the next night I do feel tired and go to sleep at a more normal time. But then the NEXT night I go back to being wide awake! I sometimes get anxious/derpressed for no other apparent reason. I can be irritable. Sometimes I act "drunk" according to my mum and I have noticed it too. When it happens, I don't really feel different but I say silly things and act weird as though I have been drinking. My appaetite is all over the place. Today I haven't really been hungry. But the past few days I've been starving!! And really thirsty. I also get this thing where my mouth isn't dry but it feels weird like I need a drink. Maybe it's dehydration? I don't know how to put it. It's like when you're hungover and your mouth feels weird and you need a drink (not alcohol obviously!). Guess it is kind of a dry mouth.

Also I have a question about malabsorbtion. With some people it "comes out" as diarrhoea (or the fatty stools thing, dunno how to spell it!), some people get constipation and some (like me) get no poo problems at all.

But can it affect urine? My urine for months has always looked very diluted, as though I have drunk loads of water. But it happens no matter how much/how little I drink! Had a urine sample done and it was fine. I didn't expect anything to show up anyway as I didn't think it was an infection or anything.

I haven't had any other issues with peeing, it doesn't smell funny or anything, I'm not going to the toilet too much/too little and I'm not passing more or less than usual. It just looks very diluted. Or there is less waste, which would indicate a kidney problem but had blood tests for kidneys and they're fine.

So I wondered if instead of getting diarrhoea...you'd get diluted urine?!

Also it sometimes has what looks like bits of skin it it or an oily substance floating on top?

I don't know what to do now or how I can convince the doctor to do another blood test?? I was so sure the result would be positive :( Now I just don't know what to do.

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You are having way too many symptoms for being so young and you need answers. I would push my doctor for more tests. Repeat the blood tests if you have to. Get a biopsy done. I'm not sure how your healthcare works and if you can get to a specialist quickly or go to another doctor. You need to do whatever you can to get to the bottom of this.

However you do have another choice. You can just go gluten free and see if you improve. The only problem with that is you might not get an official diagnosis because once you go gluten free the tests most likely won't come up positive. I don't know if having an official diagnosis will change things in any way for you since it's not like there are drugs or medications that you need for it.

If you improve drastically with the diet, then you might not want to eat gluten again to make yourself sick to get a biopsy or more bloodwork done.

If you go gluten free you might have withdrawals for a week or even two. Mine were very bad the first few days. I'm on day 13 and I felt so great the last couple of days. I'm not symptom free but I'm doing way better than I've done in a long time. I'm 40 years old, so my healing might take longer because I'm pretty positive I've always had this disease since I was born.

Whatever you decide to do, don't take no for an answer. Keep looking because you don't want to be like me and finally find out why you have been sick for so long at the age of 40. I was so sick at the age of 19 and the docs just couldn't believe anybody my age with all these "normal" lab tests could have so many health problems.

If you have celiac disease the symptoms can wax and wane. You can have terrible times and then it just mysteriously seems to go away, but it's not really gone it's just in remission.

Your symptoms could very well be celiac or other things. Celiac can be hard to diagnose if the doc isn't knowledgable enough to see it.

If you choose to go gluten free give yourself the best chance you can. Go totally gluten free and eat simply for a week or two to let the gut heal. Give it a good 3 weeks before you decide if it's helping or not. Don't do it halfway and sort of phase it out because you will be wasting your time.

Good luck!

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You are having way too many symptoms for being so young and you need answers. I would push my doctor for more tests. Repeat the blood tests if you have to. Get a biopsy done. I'm not sure how your healthcare works and if you can get to a specialist quickly or go to another doctor. You need to do whatever you can to get to the bottom of this.

However you do have another choice. You can just go gluten free and see if you improve. The only problem with that is you might not get an official diagnosis because once you go gluten free the tests most likely won't come up positive. I don't know if having an official diagnosis will change things in any way for you since it's not like there are drugs or medications that you need for it.

If you improve drastically with the diet, then you might not want to eat gluten again to make yourself sick to get a biopsy or more bloodwork done.

If you go gluten free you might have withdrawals for a week or even two. Mine were very bad the first few days. I'm on day 13 and I felt so great the last couple of days. I'm not symptom free but I'm doing way better than I've done in a long time. I'm 40 years old, so my healing might take longer because I'm pretty positive I've always had this disease since I was born.

Whatever you decide to do, don't take no for an answer. Keep looking because you don't want to be like me and finally find out why you have been sick for so long at the age of 40. I was so sick at the age of 19 and the docs just couldn't believe anybody my age with all these "normal" lab tests could have so many health problems.

If you have celiac disease the symptoms can wax and wane. You can have terrible times and then it just mysteriously seems to go away, but it's not really gone it's just in remission.

Your symptoms could very well be celiac or other things. Celiac can be hard to diagnose if the doc isn't knowledgable enough to see it.

If you choose to go gluten free give yourself the best chance you can. Go totally gluten free and eat simply for a week or two to let the gut heal. Give it a good 3 weeks before you decide if it's helping or not. Don't do it halfway and sort of phase it out because you will be wasting your time.

Good luck!

Thank you thank you thank you! :)

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Yes, the blood tests are not that accurate.

My daughter was diagnosed celiac with both negative blood tests and negative biopsy, because she had such a dramatic improvement off gluten.

There is a home test for celiac you can buy at the pharmacy or on-line in the UK like here, and it measures tissue transglutaminase IgA antibodies.

Your doctor probably ordered the hospital version of the tissue transglutamianse IgA, together with teh total IgA just to check if there is enough IgA for the test to be valid.

Probably no other tests sere ordered, since this is Europe.

Can you find out which tests were done?

And, sometimes the doctors do not know how t read the tests...

It does not matter if you ate gluten just before the test, since the tissue transglutaminase antibodies are supposed to turn up in the blood after long-term damage is done to the villi, it has to do with destruction of the villi. It is not positive in early celiac. You might have early celiac.

(the antigliadin test probably shows up positive in early celiac, and the IgG version is especially sensitive for early early celiac, and so many people were postiive so the doctors ditched that test...)

We have had some people here with slightly positive home tests, and negative hospital blood tests, and they phoned the manufacturers (it is made in Finland, or a finnish invention) and they said a weak positive is definitely a positive....so we know it is more sensitive than the blood test from the doctor....

what about your thyroid tests? What are the numbers??

I know from thyrodi forums that UK doctors and labs are not good at reading those.

Normal TSH is very close to 1, and ft4 should be at least half-way up. if they did your ft3, your TSH was low, and they do not run it unless TSH was low....

Potassium may be low if sodium is high, they should be opposite to be right 8but ideally just in the middle) If they both are low or both high, something is wrong, like diabetes.

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The first time I got my thyroid checked the GP said it was "bang in the middle" but I didn't ask the numbers or anything, same with potassium. They said that was slightly low but only by a fraction so I guess it's good they mentioned it, they obviously realised even a slightly out of range result is important to the patient :) But they said everything else was fine so I'm guessing sodium etc was fine.

I haven't been to my GP about the latest tests, only phoned and asked if they were normal or not.

Apparently excessive sweating can cause potassium to drop slightly and I have an excessive sweating problem under my arms unfortunately, so that could be why.

I don't know what ones were tested for coeliac, all I remember is on the slip for the blood test it said "Coeliac screen" or something. I can't think if there was anything else related to it! I will go to my GP this week and hopefully get the answers!

I now have a rash (similar to the rash on my uppers arms/shoulders) on my buttocks, lower back, abd back of thighs. Wondering if it's DH? It's not blistery or sore but people have said that everyone is different and for some people it doesn't hurt much but just itches? Sometimes it stings/burns after scracthing it, but not at any other time. It's just REALLY itchy! And it just looks like spots but some are just flesh coloured, just bumps really. It's on both sides on my legs etc but with my arms it's worse on my left arm. There seems to be scars/blemishes left that are white or a purply colour. I've got something on my chest as well which I think is the same thing, it looks and feels the same. It isn't just acne cos I've never known acne to itch like that and a lot of it is flesh coloured bumps or bumps but they don't look like spots if that makes sense. I've had plenty of spots in my life and I know this isn't them!

There are quite a few of them, some are smaller than others but the biggest ones are only the size of spots. Nothing else has happened, no blisters or anything except for some of them looking scabby but whether that's from scratching or not I don't know because I obviously don't know which on has been scracthed and which one hasn't!

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Hi, your thyroid numbers might maybe be off, since for example TSH should not be right in the middle. TSH should be low, at 1.

If TSH is at 3, which is around the middle, the thyroid is lowish but considered fine in the UK....but many people, especially females, would experience hypothyroid symptoms.

But if TSH is low, this could mean you are a bit hyper and symptoms of hyper are loose bowels and weakness and heart papitations and maybe pimples.

There are a number of good thyroid forums in the UK where you can ask, but you need to see the test results and take note of them.

I think you mean your potassium is a tiny bit low.

Just get another test as it probably was slightly off just then.

Same with celiac panel, you need to know what was tested.

Normal is a setting on the dryer...

DH does not need to itch much. But in most people it does.

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Thyroid disease is another one where there is much disagreement and inadequate testing. I was subclinical and thank God my OB recognized that and gave me thyroid or I never would have gotten pregnant. Then when I did get pregnant my numbers went wacko and I finally showed hypothyroid on the blood tests. Here in the U.S. they are talking about narrowing the values of "normal" because so many people are symptomatic in the normal range.

I also did terribly on Synthroid but when I switched to natural thyroid my world changed. I felt so much better. I used to use Armour natural thryoid but they reformulated and the new formula made me very sick. So now I take Westhroid and it's great stuff.

I hope you get answers soon! If they can't find answers I would just do the diet and see if you feel better. A gluten free diet certainly won't hurt you and it might just be the ticket to wellness for you. I wish I had known at your age what I know now.

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Ok so I have an update.

Got my blood test results back, celiac tests were normal, all the other tests were too (had thyroid, liver etc etc re-checked).

GP said it's probably just a bit of IBS/acid problem, prescribed me with Colofac. This was a couple of weeks ago, a lot has been going on recently so I wasn't in the right frame of mind to question the test results etc.

I finally get round to trying the Colofac. From what I remember the GP said it relaxes things and it should help the pain and the bloating. Well the pain is on and off anyway and recently it hasn't really happened much, it's more the bloating/swelling.

So anyway, I start taking these tablets, thinking "If they don't help the bloating, that could also indicate it is not IBS!" And guess what? My stomach still bloated out!

But the leaflet that came with them didn't mention bloating yet I'm sure my GP did.

Anyone here know about Colofac and bloating?

I don't buy the whole IBS thing tbh, and too many doctors diagnose it and don't know enough about celiac.

Where do I go from here? Going gluten-free won't be simple cos it is in so many foods, there's things like cross-contamination to think about...half of me really wants to put that effort in and find out what happens, the other half of me just can't deal with that much effort as there is a lot going on in the family at the moment and so it doesn't seem as important.

But I know it is important and I want to get it solved!!

Help!

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Where do I go from here? Going gluten-free won't be simple cos it is in so many foods, there's things like cross-contamination to think about...half of me really wants to put that effort in and find out what happens, the other half of me just can't deal with that much effort as there is a lot going on in the family at the moment and so it doesn't seem as important.

But I know it is important and I want to get it solved!!

Help!

Going gluten free may not be easy at first but I think that is what you need to do. Sometimes our bodies give us answers that the testing cannot. I do hope you give it a good try for a couple of months. If you go with whole unprocessed foods it is easier. If it helps it will make all the other issues you are going through much easier.

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Hi Hypergirl

Haven't read all your posts in detail but this bit stood out:

"Also developed feelings of not being able to get enough air and like I have to take a deep breath. But taking a deep breath doesn't "satisfy" it, I have to wait until the feeling goes."

That is EXACTLY how I feel when I am low in vitamin B12. Had the symptom for years before I was diagnosed (along with general tiredness 'braindead' feeling- and feeling thirsty all the time).

Check out http://www.pernicious-anaemia-society.org/

It is important to get it checked out as it can cause irreversible damage to your nerves if not corrected. Can be caused by vegan/vegetarian diet, coeliac disease, or can be genetic- as in some people simply can't absorb it well from their diet and need high dose supplements/injections.

I was told I was having a panic attack when I first went to the Dr about the shortness of breath! Funnily enough that symptom does make you feel a bit panicky!

When I was diagnosed I was advised I was only borderline deficient, however once I had injections I noticed a big improvement. A specialist advised me that different people need different levels so what is appropriate for each person varies. I just have the injections when I feel I need them.

By the way, if you are taking a high does of folic acid, this can mask a deficiency in blood tests.

Best of luck,

Eleanor

Hey all!

I'm hoping you guys can help me out.

I'm 19, female, in the UK. I've not had the best year due to being unemployed, but also due to some health issues. Sometimes I think maybe I'm being paranoid and family members get annoyed with me everytime I mention a health issue.

But then sometimes I think "This is not like me and it is affecting me!"

The past few weeks I have developed:

Feeling sick after eating sometimes. Along with tiredness. Or feeling full very quickly.

Left-sided upper abdominal pain after eating but also at other times.

Gas/bloating after eating. At both ends :P

Lower left pain which I call" the poo pain" as the only time I have had it before is when I've not gone for a while and needed to go. But I seem to have the pain everyday, sharp, stabbing pain. It seems to be relieved with "going" but I still always have a minor pain/general discomfort there.

Appetite fluctuations.

Spots/acne have returned =( on my face, shoulders, chest and back.

I also have the following, which developed a few months ago:

Sleep disturbances (never feeling tired at night, or waking up numerous times throughout the night). This is unlike me, I always used to be able to fall asleep within minutes, even seconds! And sleep deeply and soundly throughout the night.

Mouth ulcers, again this is unlike me. In October I got one, then it went but another one came along in a dfferent spot...etc etc then they stopped. Had one appear again a few days ago and it's now gone...but whether more continue to appear will remain to be seen.

Urine changes - cloudy urine but no other infection symptoms. Then it went after a week or two...and instead I have very diluted urine with bits in it/looked like something was floating on top, like when oil floats on water. Had urine test had docs and it was fine. =\ It seems to be nornal again now though.

My sweat seems to smell different, it's a really awful smell! I can't explain it but it's horrid!

I'm also underweight, it was first noticed by my mum in May this year. Weighed myself and I had lost 5 pounds, continued to lose weight. It was unintentional weight loss.

Had rapid heart rate since January this year, not palpitations though. It is just faster than usual and every day I would have moments where it would speed up as though I had been exercising but I hadn't! Although I have also had palpitations, but only occassionally and only lasting a few seconds.

Also developed feelings of not being able to get enough air and like I have to take a deep breath. But taking a deep breath doesn't "satisfy" it, I have to wait until the feeling goes.

I also get this after I eat sometimes, when I feel sick/full after eating. And it feels uncomfortable to sit up straight, makes my abdomen hurt and harder to breathe.

I went to my doctor in September about the weight loss and heart rate, had blood tests for:

Thyroid

Kidney and liver fucntion

Urea, creatinine and electrlytes.

ESR

Full blood count

All came back fine although my potassium levels are slightly low, but only by a fraction and nothing to worry about.

I had an ECG and it was fine apart from my heart rate being too fast. So I'm having a 24 hour ECG in a few weeks.

I also have headaches where it doesn't really hurt, but when I shake my head it is excrutiating pain! I only have them sometimes and thr trouble with headaches is there are so many things that can cause them...so it could be anything.

Every so often I get this lump in my neck roughly where my larynx is. It used to last a day, and I would feel it when I swallowed, sometimes it would hurt a little. When I pressed on it, even gently, it would hurt. I would run my finger up and down my neck and clearly feel it sticking out. It is not normally there (yet people keep telling me it's just my adam's apple!). It seems to get worse every time I get it. The last few times it's appeared, it has lasted a few days, even up to a week, and hurt more. I have it right now in fact, it's been there about a week, maybe more? But the pain has gone...but it's still there, about 1cm in diameter.

I think it's probably just a gland...glands swell up when fighting infection or when something is "wrong". But whenever I get them, nothing is wrong that I know of!

My mum has IBS but she oten feels sick after eating bread and I know that IBS patients can be misdiagnosed and actually have a gluten intolerance. She says she wasn't tested for intolerance, they just diagnosed her IBS based on the symptoms.

I went to my doctor the day before yesterday, mentioned the abdominal issues and she said it sounded like an acid problem so she's given me tablets. I haven't taken any yet as you have to take them 30 mins before eating and because of my sleep problems, I always wake up in the afternoon (I eventually get tired at about 5-6am) and the first thing I do is eat because I'm so hungry.

She said an intolerance would affect the lower/bowel area more so I mentioned the "poo pain" too but maybe she didn't really take it in? I know I haven't had issues with bowel movements and that is common is gluten intolerance patients...but I've read that everyone is different and they may not have those symtpoms! Some do not have any symptoms apparently.

I've got to go back in a month and let her know how the tablets are doing. And if anything gets worse/changes I will obviously go back sooner.

So, does any of this sound like a gluten intoerance? It was something that always came up as a cause for weight loss when I looked it up months ago but I never thought about it because I assumed I would have other symptoms, like diarrhoea and stuff :P

I don't want to sound like I am over-reacitng either. Obviously a rapid heart rate wouldn't be anything to do with it. But the weight loss is really not good and the pains and discomfort don't help me wanting to eat. And as I said I've had general appetite fluctuations on top of that. The other day, I felt really sick after eating cereal (Coco Pops)...but I eat that same cereal everyday and don't always feel sick? Anyway, it made me feel really awful and the rest of the day I had NO appetite at all! And on other days I am constantly hungry!

I'm not saying my doctor is wrong - maybe it is just an acid problem. But do acid problems cause lower/bowel related pains? And appetite problems?

And the spots/acne - I had them appear in February and put it down to the mini-Pill I had changed to. Started taking vitamin/mineral supplements a few months ago and it really helped! I was so pleased! But they've come back over the past few weeks for no reason. If it's due to my sleep issues - then I need to know what is causing the sleep issues and I've heard gluten can cause this. Or could it be a reaction? Or is it caused by the damage an intolerance does, meaning my body is no longer absorbing them, meaning my skin isn't getting the goodness and therefore breaking out in spots!

I probably DO sound really paraniod! But I've got an open-mind, I'm trying not to jump to conclusions or self-diagnose. I am only desperate for an answer and hopefully an end and to return to normal! :)

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