Looking for advice

[jenhutch]

Hello all,

I'm a new member here but have lurked for a while.

I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps.

General info: female, low level smoker, drink alcohol, aged 32.

I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason. 

In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life.  I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person! 

Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better. 

Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period.

Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound. 

Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...)

Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help.

Jen

[Jmg]

7Hi jen and welcome

No-one can diagnose remotely via nterwe  posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above...

Lots of things fit the pattern as I'm sure your lurking has revealed.  It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card

For now it's really important  that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion.

Ask for a full celiac panel as there are variety of tests. Find further info here

There's a lot to take in,  but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!

[jenhutch]

Hi Jmg,

Thanks for the upbeat reply and all the info! I'm gonna chase this up and either rule it in or rule or out. Unfortunately I've missed the boat as far as adding the celiac panels to blood test goes this time round as it's scheduled for early this Tue however! I have just gone and splashed out on the biocard home-test... I'm thinking trying it out will be beneficial either way as extra ammo before docs appointment. 

Have you - or anyone else - much experience on the accuracy of such a test? My understanding is that they have generally good reviews but not sure I'm convinced.

Open Original Shared Link

Jen

[Jmg]

1 hour ago, jenhutch said:

I've missed the boat as far as adding the celiac panels to blood test goes this time round as it's scheduled for early this Tue however!

Call your doctor's office and ask them to relay your request to the doctor to amend the test request, they should be able to sort it without an additional meeting and delay. Worth a try anyway

I think the Biocard tests TTG IGA and it may give you an indication. Do post your results here as I'm sure others will be interested in its effectiveness.

If it's negative however remember that there are several celiac tests for a reason. Some test on one, some on another etc...

However my guess is your doctor will dismiss them and want their own testing. That's the usual experience. 

[jenhutch]

Hi,

Just wanted to quickly update.

This new doctor is amazing and has scheduled me for a bunch of tests to rule out celiac and helicobacter plus scheduled an ultrasound. And, if all these come back fine she's going to send me on to a gastro specialist who she regards as very good to check for intolerances and / or allergies. I can't tell you the difference she has made to my feelings towards doctors in general just by not trying to imply I had anxiety issues and agreeing that it's important to rule everything out before we go ahead and say "ok, IBS" (which I'm more than happy to do once I know I'm not at risk of facing something more serious down the line). 

Thanks for the push to ask the doc for a better diagnosis.

[Jmg]

Hello again

That's good news. Finding a supportive doctor is very important and it's good they're checking for other potential causes. I don't think of them sometimes because gluten does so many weird things to me that I always suspect it. If I were a casualty doctor and you came in with a a severed arm I'd probably quiz you on your diet...

Just on celiac testing. The post I linked to last time shows the full celiac panel, you may or may not get that depending on your health service's policies. So if you get a negative, be sure to ask for which tests were carried out and ideally get a printout and share it here. Obviously don't say you're going to share it on the web with a load of people who aren't doctors though...

If the blood tests are positive the next step is an endoscopy. Stay on gluten!

If they're negative, you may still have found your cause. I tested negative, but gluten was the problem nonetheless. So when the diagnostic process is finished you may want to go gluten free regardless based on your previous experience. 

Finally, stay positive, this is your time for pushing for an answer and not stopping till you get one.

Best of luck! 

[EmMothRa]

Goodness Jenhutch, I could have written a very similar story to yours, I'll be interested to see what your results are. I was diagnosed with IBS when I was 17 and in my mid 20's had multiple issues with fatigue, gastro problems, raised liver enzymes that never did explain and to which I never got an explanation. I just carried on really, the IBS drugs never worked so I just basically put up with the fatigue and stomach issues. Fast forward a few years and I decided to join a crossfit gym and get as fit as I could, so tired of being tired all the time. As part of the gym I went on a weight loss challenge and did the Paleo diet (cutting out all wheat, grains, dairy, starch), it was like a revelation, the bloat went, the bad stomachs went, the fatigue went and my skin cleared up. After the end of the 6 week challenge I talked to the nutritionist that ran the class and he said, go to the doctors get yourself tested for a Gluten allergy, my doctor was not so clued up and forgot to tell me that I needed to be eating a diet that included gluten before the tests (Doooohhh), however the blood tests came back that I am not absorbing iron as I should and surprise surprise raised liver enzymes. So here I am now on a Gluten challenge trying to break myself so that I can go for the blood tests!!!

Funny isn't it that when you look back everything actually fits, I could kick myself for not realising this a long time ago. Whatever my results are after all testing is done I will be saying goodbye to Gluten regardless !!

Best of luck with your testing.   

[Victoria5289]

On 4/28/2017 at 6:57 AM, jenhutch said:

Hello all,

I'm a new member here but have lurked for a while.

I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps.

General info: female, low level smoker, drink alcohol, aged 32.

I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason. 

In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life.  I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person! 

Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better. 

Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period.

Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound. 

Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...)

Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help.

Jen

Please check to rule out ovarion cancer or  a tumor