Can Anyone Relate - Bowel/Urine/Lung/Achey Issues

[GawaMark]

I'm a 31 year old male who is overweight, smoke 10 cigarettes a day and have 4 family members with caeliac disease on the maternal side. Along with underactive thyroid.

Throughout my life I've been inclined to having cramps and mixed bowel movements especially in the morning. I usually put this down to anxiety in the past. 

Over the last 18 months/2 years I've began to notice more concerning symptoms and have found my GP to be quite dismissive. I will try to describe these below:

- Lungs/ENT. Blood in saliva since Nov 19. Thick sticky mucus/phlegm which is usually white or clear with brown specks. Occasional wheeze which sounds like it's from trachea and clears with a drink or cough. Frequent throat clearing which produces mucus. No involuntary or reflux coughing, only when forcing myself to clear throat which happens frequently through day. Also frequently swallow as if something in throat. 

Tests Related to this - 2 x-rays in Nov 19 and Jan 21 which were clear. ECG which was fine. Blood tests for clots which were fine. Lung function test which was normal for my age/BMI/health. Consultation with ENT doctor where he seemed to not be too concerned. Went to dentist who determined I have gingivitis which may explain blood in saliva.

 

Bowels - For a number of years Id often have inconsistent bowel movements and stomach cramps which I put down to anxiety. Have monitored it more since April and tbh not had alot of stomach cramps. In terms of BM I have noticed - Constipation, diahorhea, mixed stools, loose stools, flat stools, bulky stools, floating stools, stools with black specks, undigested food in stools, oily stools, mucusy stools. No 2 days are the same. Also noticed on 2 occasions what I can only describe is yellow rubbery balls with a white sediment inside. About 5-10x the size of sweetcorn and similarly to what I imagine a gallstone to look like.

 

Urine - Frequent urination throughout the day but not sure if it's anxiety related. If I'm out for the day I don't seem to urinate as much. Increasingly noticed foamy urine which either fills half the bowl, clings to the sides of the bowl, isn't noticeable. The more hydrated I am the less I notice this. 

 

Aches - Around April time I began to notice an intermittent mid back/left flank dull ache which is <1/10 in pain. That hasn't been as noticeable recently but since the beginning of this month I've began to notice a similar dull ache which seems to be more consistent in my left shoulder. Aside from the above I would get cramps, pins and needles, back pain, rib tenderness and muscle aches throughout my life. However recently it seems more localised

 

Other - Have been experiencing Night Eating Syndrome for nearly 2 years now. I will wake up most nights around 3am and eat and then go back to sleep. In the last couple of months I've noticed some spider veins located to the side and underneath my breasts. 

 

I have spoken to my GP about all of the above this morning and was met with a serious response in "doesn't sound like there's much wrong with you". I guess this is because alot of my symptoms don't impact may day to day life and are quite mild. However it is concerning to be experiencing so much at one time. As I have a family history of both caeliac disease and underactive thyroid I think it's possible I could have both of one of these issues. This may not explain all my symptoms but could be a plausible explanation for some. 

 

Out of interest is anybody able to relate to any of the above? Especially the symptoms affecting the lungs and the back aches as these are probably my most concerning at present. Oh and the spider veins too. 

If not caeliac does anyone have any other possible suggestions or diagnosis for my issue? 

My biggest concern/worry is lung cancer however rationaley I know this is unlikely at my age and I feel that if the blood in my saliva was coming from my lungs then I'd expect to be much worse by now given first symptom was 20 months ago. Also the fact that my GPs and ENT doctor didn't seem too concerned about my lung symptoms also gives me some solace (mind you back ache has developed since).

In addition to the above I certainly am experiencing anxiety at the minute and I can't rule out that contributing to my symptoms. 

The GP today has booked me in for some tests on Thursday morning for liver function and caeliac and some other blood tests. So hopefully I will have some answers soon.

 

 

 

 

 

[cristiana]

27 minutes ago, GawaMark said:

I'm a 31 year old male who is overweight, smoke 10 cigarettes a day and have 4 family members with caeliac disease on the maternal side. Along with underactive thyroid.

Throughout my life I've been inclined to having cramps and mixed bowel movements especially in the morning. I usually put this down to anxiety in the past. 

Over the last 18 months/2 years I've began to notice more concerning symptoms and have found my GP to be quite dismissive. I will try to describe these below:

- Lungs/ENT. Blood in saliva since Nov 19. Thick sticky mucus/phlegm which is usually white or clear with brown specks. Occasional wheeze which sounds like it's from trachea and clears with a drink or cough. Frequent throat clearing which produces mucus. No involuntary or reflux coughing, only when forcing myself to clear throat which happens frequently through day. Also frequently swallow as if something in throat. 

Tests Related to this - 2 x-rays in Nov 19 and Jan 21 which were clear. ECG which was fine. Blood tests for clots which were fine. Lung function test which was normal for my age/BMI/health. Consultation with ENT doctor where he seemed to not be too concerned. Went to dentist who determined I have gingivitis which may explain blood in saliva.

 

Bowels - For a number of years Id often have inconsistent bowel movements and stomach cramps which I put down to anxiety. Have monitored it more since April and tbh not had alot of stomach cramps. In terms of BM I have noticed - Constipation, diahorhea, mixed stools, loose stools, flat stools, bulky stools, floating stools, stools with black specks, undigested food in stools, oily stools, mucusy stools. No 2 days are the same. Also noticed on 2 occasions what I can only describe is yellow rubbery balls with a white sediment inside. About 5-10x the size of sweetcorn and similarly to what I imagine a gallstone to look like.

 

Urine - Frequent urination throughout the day but not sure if it's anxiety related. If I'm out for the day I don't seem to urinate as much. Increasingly noticed foamy urine which either fills half the bowl, clings to the sides of the bowl, isn't noticeable. The more hydrated I am the less I notice this. 

 

Aches - Around April time I began to notice an intermittent mid back/left flank dull ache which is <1/10 in pain. That hasn't been as noticeable recently but since the beginning of this month I've began to notice a similar dull ache which seems to be more consistent in my left shoulder. Aside from the above I would get cramps, pins and needles, back pain, rib tenderness and muscle aches throughout my life. However recently it seems more localised

 

Other - Have been experiencing Night Eating Syndrome for nearly 2 years now. I will wake up most nights around 3am and eat and then go back to sleep. In the last couple of months I've noticed some spider veins located to the side and underneath my breasts. 

 

I have spoken to my GP about all of the above this morning and was met with a serious response in "doesn't sound like there's much wrong with you". I guess this is because alot of my symptoms don't impact may day to day life and are quite mild. However it is concerning to be experiencing so much at one time. As I have a family history of both caeliac disease and underactive thyroid I think it's possible I could have both of one of these issues. This may not explain all my symptoms but could be a plausible explanation for some. 

 

Out of interest is anybody able to relate to any of the above? Especially the symptoms affecting the lungs and the back aches as these are probably my most concerning at present. Oh and the spider veins too. 

If not caeliac does anyone have any other possible suggestions or diagnosis for my issue? 

My biggest concern/worry is lung cancer however rationaley I know this is unlikely at my age and I feel that if the blood in my saliva was coming from my lungs then I'd expect to be much worse by now given first symptom was 20 months ago. Also the fact that my GPs and ENT doctor didn't seem too concerned about my lung symptoms also gives me some solace (mind you back ache has developed since).

In addition to the above I certainly am experiencing anxiety at the minute and I can't rule out that contributing to my symptoms. 

The GP today has booked me in for some tests on Thursday morning for liver function and caeliac and some other blood tests. So hopefully I will have some answers soon.

 

 

 

 

 

Hello Mark and welcome to the forum

Firstly, from your spelling of coeliac, do I take it you are messaging us from the UK?

If so, I should say I am a British moderator on this forum and so am familiar with the pathway to diagnosis here in the UK.

Did your GP say to you that you must be eating gluten before any blood tests are taken? This will also apply to any endoscopy they may wish to conduct. When I was diagnosed back in 2013 it was recommended that one ate the equivalent of two slices of normal bread every day for six weeks.  This is very important.

It sounds to me that with that number of coeliacs in your family there is a good likelihood that coeliac disease is a real possibility in your case.  If you search our site you will see that many of us had strange symptoms before we were diagnosed and once the diagnosis was in place, it was as if it was the last piece of the jigsaw puzzle was put in place and it all suddenly made sense.

For myself, yes, I had blood in my saliva, which was in my case due to poor gum health.  I had strange low level pains in my stomach, but also around the sacroiliac joints.    I got migraines, visual disturbances, anxiety, little burst blood vessels under my skin, tingling, buzzing in my extremities, twitching, dark circles around my eyes.  All sorts of weird stuff.   If you read the forum you will see that coeliac can affect individuals in very different ways.   Going gluten free made a big difference for me.

You are definitely taking a step in the right direction by being tested.

In terms of being a UK coeliac, you may wish to check out the Coeliac UK website for information on how diagnosis pans out here in the UK.

Do come back to us if you have any more questions - and do let us know how you get on.

Cristiana

Edited July 27, 2021 by cristiana

[cristiana]

And a PS, I ought to have said, Mark - a lot of symptoms that coeliacs experience are due to vitamin and mineral deficiencies caused by years of malabsorption.   You may find that this is at the route of some of your problems.   Have you been tested for ferritin, B12 and vitamin D deficiencies?   These tend to be the tests offered under the NHS.  

[GawaMark]

19 minutes ago, cristiana said:

And a PS, I ought to have said, Mark - a lot of symptoms that coeliacs experience are due to vitamin and mineral deficiencies caused by years of malabsorption.   You may find that this is at the route of some of your problems.   Have you been tested for ferritin, B12 and vitamin D deficiencies?   These tend to be the tests offered under the NHS.  

Hi Cristiana,

Thank you so much for the warm welcome and in depth response; I really appreciate you taking the time to respond and also read my post.

When I spoke to my GP this morning I pretty much just provided a brief timeline of the issues I've been experiencing the past few months. I think in some ways though it's quite overwhelming for them as there is such a wide array of symptoms. 

The GP didn't mention any prep for the blood test. From what I gather she plans to do a variety of different tests with celiac being one. I tend to eat gluten nearly every day whether it be through snacks, bread, sauces or meals. So I guess I should just keep eating as normal until then.

Funnily enough one of my aunties with caeliac disease also suffers from gingivitis. I would get random mouth sores frequently too so that could defo explain that. 

I think the caeliac disease (if I have it) could certainly provide an explanation for a number of my symptoms and while I've always said to my aunt's growing up that I'd be devastated to be caeliac due to my love of products containing gluten. I must say that now I'd be more than happy with a diagnosis if it resulted in my health improving. Especially as there are alot of very good gluten free alternatives now too. 

Another symptom I've had for a while which I didn't mention is excess gas and indigestion. For the size of me I tend to struggle to eat 2 course meals or more when out and get bad indigestion so maybe this also relates.

 

One question I do have though is that it seems alot of people don't show gluten intolerance on the blood tests and it only shows up after an endoscopy I believe or maybe colonscopy? Is there anything which I can of should be doing prior to make it more likely that my result will be true so to speak.

 

[GawaMark]

Oh and yes I am also British

[cristiana]

9 minutes ago, GawaMark said:

Hi Cristiana,

Thank you so much for the warm welcome and in depth response; I really appreciate you taking the time to respond and also read my post.

When I spoke to my GP this morning I pretty much just provided a brief timeline of the issues I've been experiencing the past few months. I think in some ways though it's quite overwhelming for them as there is such a wide array of symptoms. 

The GP didn't mention any prep for the blood test. From what I gather she plans to do a variety of different tests with celiac being one. I tend to eat gluten nearly every day whether it be through snacks, bread, sauces or meals. So I guess I should just keep eating as normal until then.

Funnily enough one of my aunties with caeliac disease also suffers from gingivitis. I would get random mouth sores frequently too so that could defo explain that. 

I think the caeliac disease (if I have it) could certainly provide an explanation for a number of my symptoms and while I've always said to my aunt's growing up that I'd be devastated to be caeliac due to my love of products containing gluten. I must say that now I'd be more than happy with a diagnosis if it resulted in my health improving. Especially as there are alot of very good gluten free alternatives now too. 

Another symptom I've had for a while which I didn't mention is excess gas and indigestion. For the size of me I tend to struggle to eat 2 course meals or more when out and get bad indigestion so maybe this also relates.

 

One question I do have though is that it seems alot of people don't show gluten intolerance on the blood tests and it only shows up after an endoscopy I believe or maybe colonscopy? Is there anything which I can of should be doing prior to make it more likely that my result will be true so to speak.

 

Hi again Mark

Nice to have another British person on board!  Although I am sorry you are having these issues, obviously!

Certainly, it is much easier to be a coeliac today, even compared with ten years ago, as there are some fabulous gluten-free products these days.

Coeliac disease doesn't always show in blood tests, so if your doctor still strongly suspects coeliac disease (or you do) it can be really useful to have an endoscopy to rule it in or out.

Just make sure you are eating enough gluten - sounds like you are, and have been.  As I say, the equivalent of two slices of normal bread should do it.  If, like me, you like biscuits, wheat based breakfast cereals, etc, that will help or can be good enough (so long as you eat enough). I remember eating lots of Weetabix and chocolate Penguin bars!  

You may have both the blood tests and the endoscopy, find out it isn't Coeliac disease, and yet still find that you are having problems with gluten.  In that case, it would be suggestive of a condition known as Non-Coeliac Gluten Sensitivity (NCGS)  - but it is important to rule out Coeliac first.

C

[Scott Adams]

Welcome to the forum! Frequent urination can be a symptom of diabetes, which is a condition that is also associated with celiac disease (rates of Type 1 diabetes are much higher among celiacs and vice versa), so be sure to ask your doctor to check you for this. 

The lung issues you describe would not be a typical symptom of celiac disease, and given that you are a regular smoker it would make sense to have your doctor check your lungs for any issues...an x-ray or scan for any issues.

Many of your other symptoms could definitely be related to gluten sensitivity or celiac disease, and the likelihood is higher for this given your family history. 

[GawaMark]

53 minutes ago, Scott Adams said:

Welcome to the forum! Frequent urination can be a symptom of diabetes, which is a condition that is also associated with celiac disease (rates of Type 1 diabetes are much higher among celiacs and vice versa), so be sure to ask your doctor to check you for this. 

The lung issues you describe would not be a typical symptom of celiac disease, and given that you are a regular smoker it would make sense to have your doctor check your lungs for any issues...an x-ray or scan for any issues.

Many of your other symptoms could definitely be related to gluten sensitivity or celiac disease, and the likelihood is higher for this given your family history. 

Hi Scott,

 

Thanks for taking the time to reply and also welcome me to the forum.

 

The frequent urination is a strange one which I think could well be anxiety related. It seems to be when I'm in the house I urinate alot whereas when I'm out and about I urinate less. The foamy/frothyness is strange though and something I need investigated further. It could even be the likes of diabetes like you said which in turn has resulted in slight kidney damage. 

As for the lungs I've had 2 x-rays 12 months apart which were clear. The wheeze does concern me but the fact it clears up from clearing my throat or drinking makes me think/believe it may be an upper respiratory problem. I've also had a consultation with an ENT and some function tests which came back fine. It could even be something like acid reflux irritating my throat, I'm sure clearing it frequently doesn't help either and similarly if I am caeliac this won't be helping. 

The thing which concerned me most was the blood but I genuinely don't believe that's been coughed up from my lungs. And the fact I've got gingivitis and potentially caeliac disease would further suggest it may be originating from my gums. Similarly I believe smoking is probably contributing to the mucus too.

However with all the above said I do still worry incase it may be something like lung cancer. But I take solace in the fact my symptoms began near 2 years ago, I've had a few tests done and also spoken with doctors which none seemed to concern by as it is very unlikely to be lung cancer at my age. Googling symptoms certainly doesn't help though. 

Strangely I'm now in a position where I nearly want to be diagnosed as caeliac or for something to be identified by my tests on Thursday. An explanation for all these issues along with a treatment plan would help my physical and mental health enormously. Due to how widespread my problems are I do think I probably have an autoimmune issue of some sort whether that be diabetes, thyroid, caeliac or something else who knows. 

 

I'll defo update here and keep you posted on any results though.

[cristiana]

Hi Mark, 

Just chiming in again... I forgot to say that since my diagnosis, so not sure if it is related to coeliac or not, I occasionally get an itching sensation deep in my throat, sometimes it feels as if it is in my chest. It also triggers mild wheezing.

When it first started, a few months before Covid broke out in the autumn of 2019, I got quite worried about it so asked my GP to order an X-ray  which was clear, 

I also mentioned it to my gastroenterologist, who decided he should do an endoscopy to see if reflux was the problem. The scope showed no actual damage to the throat, thankfully.      

However, while all this testing was being done I started to take Gaviscon last thing at night in case it helped.  I also started to leave 2-3 hours after eating before I went to bed, reduced acidic and fatty food intake, and also slept with a wedge pillow, recommended for reflux sufferers.   I finally began to feel better.  

My gastroenterologist came to the conclusion that I was suffering from silent reflux.   Now, when I am getting these symptoms I go back to taking the abovementioned precautions and I get relief.  

During this period I had developed a wheeze, and found I couldn't cope with things like scented candles, dusty environments, etc etc.  It seems my reflux had set off some sort of asthma like symptoms.   I was prescribed a blue inhaler and occasionally take a couple of puffs it if I feel I need it.  

You may wish to try some of the tips above, it may help.

C.

 

 

Edited July 27, 2021 by cristiana

[Wheatwacked]

2 hours ago, cristiana said:

I occasionally get an itching sensation deep in my throat,

If you are on blood pressure meds, particularly Lisinopril it is a common side effect. I wound up with an inginal hernia from it.

 

11 hours ago, GawaMark said:

I have gingivitis...Frequent urination...back aches...GP to be quite dismissive

I found that rinsing with anti plaque mouthwash then brushing without toothpaste helped. The mouthwash softens the plaque then you don't need an abrasive. I am male 70 years and was first diagnosed with prostate hypertrophy when I was 21. Frequent, cloudy, sometimes pain. Eventually it improved a few months after starting gluten free in 2014 but still have a high PSA. I was almost going to buy a new bed for bachaches, but they went away with GFD. I counted a total of 18 symptoms similar to yours that cleared with the gluten free diet over time. My entire life doctors listened to my complaints, then told be there is nothing wrong. People considered me a hypochondriac. Muscle tone in chest and shoulders improved, without excercise, within weeks of adding sushi nori to my diet. So even though they said impossible, I know my intake of iodine was deficient. Each sheet is 400 mcg of iodine, so I chew on one a day with my morning coffee. 

As cristiana said, this is a disease that causes malabsorbtion so pay close attention that you are getting enough vitamins and minerals. Most are not reflected in blood tests. People even without celiac have deficiencies. You can start even before the tests. Diahrea causes Potassium loss, but that must be increased through food not supplements. The WHO considers it a world wide nutrient of concern. https://health.gov/sites/default/files/2019-09/2015-2020_Dietary_Guidelines.pdf

What Are the Symptoms of Celiac Disease? - Schär (schaer.com) https://www.schaer.com/en-us/a/celiac-disease-symptoms

So welcome to the club. There is light at the end of the tunnel.