PDA

View Full Version : Confusing respiratory and bowel distress - Please help!


liang
08-10-2013, 02:23 PM
Hi thanks for reading my first post:

I have been going through some strange and debilitating symptoms for the last month - I started having IBS-like symptoms since early March (mainly soft loose stool and flatulence, burping and couple strange episodes of fatty stools and lactose intolerance - Was not lactose intolerant before), also discomfort in the rectum area (which previous GP think was hemorrhoids and could be what's causing the feeling of fullness), but things started to get really strange since beginning of July:

- I started having feeling of suffocation/not getting enough air and my throat closed up (but no pain or discomfort when swallowing)
-Feeling of compression around Sternum (which seem to come and go)
- Blocked ears (stuffy, no pain)
- White phlegm (seems to be coming from the area just below the Adam's Apple, with some episodes of hemoptysis which has now seem to disappeared)
-Weight loss (12 lbs in 2 months)
-Numbness in hands/arms (seem to come and go) and couple nights when my legs kinda kicked a bit (now stopped)
-Muscle soreness (after exercising)
-Insomnia (either can't fall asleep or wake up sometime from feeling of not getting enough air or having to go the loo)
-Cold hands/feet
-Bladder became sensitive (when pressed and increased urination, almost seem to not keeping water, with darker urine in the morning then usual and feeling of dehydration)
- Had episodes of diahrreah which has now disappeared
- An inflamed/uncomfortable feeling in the rectum (my current GP said the hemorrhoids at the area look bit dilated), which seem to relate to the new bladder sensitivity.

Basically my whole middle tube (from throat all the way down) seem to be "squeezed" and closed up.

I have been looking and no visible blood in stool so far (ordered the Hemocult stool test will send it away just to make sure), my new GP has been quite supportive and we are doing as many tests as possible, some blood works came back and indicated:
-No anemia
-Raised level of IgE (which probably means nothing since I had eczema and am allergic to seaweed etc.)
-No evidence of Diabetes type 1 (if I remembered correctly)
-No detectable abdominal lumps/tender spots
-No actual chest pain (more just compression)
-First sample (did 3 WITHOUT fixative solutions) of parasite test negative
- Waiting for results on Liver/Thyroid/Kidney functions, Antibodies/White blood cell, Malnutrition (lvl of protein, calcium,sodium), urine test (not sure what they are testing for, need to know if hematuria/proteinuria is present)
Not had consultations with specialists or scans yet (just a simple chest X ray which apparently is normal). Will hopefully get a bowel CT scan/Sigmoidscopy (they seem to be reluctant giving out Colonoscopy these days) and endoscopy from an ENT specialist soon.

Lots of confusing and seemly unrelated symptoms... Seem to be all over the body and not sure if the earlier IBS-like symptoms (not been properly scanned and diagnosed before ruling other things out, due to the laziness of previous GPs)are the causes or the new respiratory symptoms are aggravating the digestive systems. Hope to first rule out the most serious conditions and get proper diagnosis soon (hopefully nothing too serious), any ideas on what these could be? (Infection, autoimmune, neurological etc.?)

Thanks for your help.

ladybud
08-10-2013, 08:58 PM
I would want to have pulmonary function tests done to check for asthma, as the throat closing, compression feeling under sternum, mucus, and high IGE are consistent with asthma. An autoimmune problem is possible and tests should be done for that. One uncommon thing that can cause diarrhea, asthma, and sometimes flushing is a 5-HIAA producing tumor in the GI tract. A urine 5 HIAA test could be done if nothing else shows up. These are pretty rare, and removal of tumor gets rid of the symptoms. Numbness in arms, hands could be from Vit B12 deficiency, which can be measured in the blood and supplemented if low.

liang
08-11-2013, 04:01 AM
Thanks for the insightful reply, will ask my GP to look into more tests for chemical/hormonal imbalance/abnormalities (the test done for liver/kidney and thyroid functions should show these) and get the 5-HIAA urine test and CgA blood testing.
Had another episode of darker/orange colored morning urine... My body doesn't seem to be keeping water and it's really worrying me now.
Are there any abnormal secretion of chemical/hormones that would cause dehydration/overactive bladder?

liang
08-27-2013, 08:54 PM
Hi guys please try to give some input if possible, The diahrrea has gone but sometime I get a strange strangled/tight sensation in the anal canal while bowel movement.
The coughs have disappeared but I now get a slight feel of having to swallow when exhailing, someone had suggested silent reflex might be what's causing the upper airway symptoms, any inputs?
The blood occult stool tests came back negative, so that's a good sign at least.
My total IgE level is at 1280 at the time of testing, ten times the normal amount. I will see new blood test results tomorrow and hope they might point some directions to getting rid of these symptoms.

ladybud
08-27-2013, 11:06 PM
An IGE level that high would indicate some sort of severe allergy, which could be causing an asthma-like reaction with cough, and the diarrhea as well. The strange sensation in anal canal may be tenesmus, like a spasm that makes you feel you have to go even when you don't. Feeling like swallowing helps to suppress cough, which is triggered by exhalation, so I think your symptoms sound better, but not gone. An allergy referral would be reasonable and a GI consult to rule out inflammatory bowel disease and food allergies. Pulmonary function tests and perhaps a CT scan of chest would provide info related to possible asthma, very common in people with eczema.

liang
08-29-2013, 03:57 AM
Thanks ladybud for your support! Just got the newest results back - The new chest x ray shows some striations/lines that stand alone might not mean much but will definitely show to the pulmonary specialist tomorrow when checking for asthma. The new total IGE result again shows amount at 1200+, which will need to be investigated. The new tests did not find any intestinal parasites (was wishing that could be the answer to the gastric problems), but indicated presence of steatorrhea (not sure how serious just says positive), which means my small intestine is not absorbing fat well and might be the cause of my recent weight loss (mainly fat and water).
I learned that there could be one reason for all these symptoms called Alpha1 Antitryspin deficiency, which if tested positive means my lungs and liver will slowly deteriorate and develop Emphysema and liver cirrosis... Not the way to go.
I get a abdominal sonogram tomorrow.. hope nothing serious are found, keep fingers crossed for me :)  

liang
08-29-2013, 06:05 AM
Just got the newest results back - The new chest x ray shows some striations/lines that stand alone might not mean much but will definitely show to the pulmonary specialist tomorrow when checking for asthma. The new total IGE result again shows amount at 1200+, which will need to be investigated. The new tests did not find any intestinal parasites (was wishing that could be the answer to the gastric problems), but indicated presence of steatorrhea (not sure how serious just says positive), which means my small intestine is not absorbing fat well and might be the cause of my recent weight loss (mainly fat
and water).

I learned that there could be one reason for all these symptoms called Alpha1 Antitryspin deficiency, which if tested positive means my lungs and liver will slowly deteriorate and develop Emphysema and liver cirrosis... Not the way to go.

I get a abdominal sonogram tomorrow.. hope nothing serious are found, keep fingers crossed for me :)  

liang
08-31-2013, 05:36 AM
Forgot to mention even with all the symptoms my Eosinophils, lymphocytes and platelet counts are all either at base levels or in the middle, and same with CRP level and Antinuclear body factor (for indicating autoimmune diseases), so what could I possibly have?

liang
08-31-2013, 08:19 AM
Need to mention with all the symptoms my Eosiniphils, Lymphocyte and CRP level are all either at base level or within range, and negative ANA result I guess rules out autoimmune possibilities? Only thing to work with so far are the extremely high total IgE (1280) and positive heated fat stool content (indicating fat intolerance/malabsorption, and possibly the main cause of weight loss as my bodyfat level keeps dropping), what could cause so many symptoms with such little blood test abnormalities?

liang
08-31-2013, 07:57 PM
Forgot to mention that I think the IBS-like symptoms could be caused by fat malabsorption as the fat not being absorbed could act like lubes and cause the diarreah and weight loss (from not absorbing fat). The gastric specialist I met think the respiratory symptoms could be caused by silent acid reflex which makes sense. I did eat quite a lot of spicy foods for almost 2 years prior to this year, could that have damaged my mucosal linings and caused all these symptoms?
So far even with all the symptoms my Eosinophils and CRP remain at base level and no signs of anemia, negative for ANA and Rheumatoid Factor (so guess not autoimmune diseases), what could I possibly have then???

ladybud
08-31-2013, 10:10 PM
I would be concerned about possible inflammatory bowel disease (ulcerative colitis or Crohn's), a gluten intolerance, celiac disease which can cause malabsorption. I would ask for anti=transglutaminase antibody and anto-endomysial antibodies for celiac disease. You could do a capsule endoscopy to see the small bowel, and gluten IGG studies on blood. A CT scan can help with Crohn's disease, and endoscopy the ulcerative colitis. I would also have your pancreatic enzymes measured, amylase and lipase. An ANA would be helpful to look at possible other autoimmune diseases. Let us know what shows up? Oh, ferritin (stored iron), Vit B12 and Vit D should be checked, usually low in malasorption.

liang
08-31-2013, 10:39 PM
I would be concerned about possible inflammatory bowel disease (ulcerative colitis or Crohn's), a gluten intolerance, celiac disease which can cause malabsorption. I would ask for anti=transglutaminase antibody and anto-endomysial antibodies for celiac disease. You could do a capsule endoscopy to see the small bowel, and gluten IGG studies on blood. A CT scan can help with Crohn's disease, and endoscopy the ulcerative colitis. I would also have your pancreatic enzymes measured, amylase and lipase. An ANA would be helpful to look at possible other autoimmune diseases. Let us know what shows up? Oh, ferritin (stored iron), Vit B12 and Vit D should be checked, usually low in malasorption.

Thanks for your help Ladybud! I am goind to have a colonoscopy and gastroscopy arranged hopefully soon with the specialist that suspect that I might have silent reflex causing the respiratory problems. She also did an abdominal ultrasound last Friday and there's apparently a small polyp in the gallbladder - I will see her on Tuesday hopefully it's not something to worry about. The GP back in the UK has tested Celiac twice and the serology tests showed negative result (at the moment I wish I could just have Celiac so we can be one the road treating it and be back to normal instead of trying to find out what's wrong and continue to loose weight), ferretin level is surprisingly slightly high when tested a month ago. ANA/antinuclear factor test came back negative and baseline CRPs so guess no autoimmune at work here? As for inflammatory bowel conditions would CRPs be low/baseline level if they are not inflammed at present? The small bowel is I think where the problem might be but the most difficult to get into, there's a new technique here in Taiwan by using scopes with air sacs from mouth and anus to look into the small bowel but don't know how much that would cause (they don't seem to do the hydrogen breath test for SIBO here though which is a real bummer). Do you think a plain bowel x- ray might be of value (as some structure abnormalities in the small bowels might also cause malabsorption)?

Almost at end with my patience... What could possibly cause the body to go wrong in so many ways?

ladybud
09-01-2013, 01:35 AM
Will try to answer questions. Yes CRP would be normal when intestines not inflamed. A regular xray wouldn't show much but a small bowel follow=thru might and is worth a try. It will show signs of celiac, as not every celiac has positive antibodies on blood work. But if you are having endoscopy, they can go into the small intestine, upper part, and do biopsy, which should tell you something. Not all malabsorption has to do with gluten. Sometimes it is enzyme deficiency related. Fatty stools indicate malabsortion and often vitamin deficiencies are present, like Vit D, B12 and folate, plus mineral deficiences like Mg and Ca and iron. Unfortunately, autoimmune disorders cannot be ruled out just by a neg ANA, as sometimes symptoms precede lab evidence, and not all autoimmune disease has an associated positive ANA, like UC and Crohn's.

liang
09-01-2013, 08:45 PM
Just wondering in the process of finding out why the body is not absorbing fat (liver/pancreas problems, small intestinal related or lack of bile acid/digestive enzymes?) what are some of the medications/ways of helping patients to absorb fat and fat-soluble vitamins?

ladybud
09-02-2013, 08:34 AM
Primarily the cause must be addressed, but if lipase is deficient in GI tract, that can be taken as a supplement. Fat soluble vitamins can be supplemented.

liang
09-03-2013, 08:56 PM
Primarily the cause must be addressed, but if lipase is deficient in GI tract, that can be taken as a supplement. Fat soluble vitamins can be supplemented.

Met the GI specialist today - The small polyp found in the gallbladder seems to be less than 0.3cm so just need follow up so far, there's apparently a stone or calcified spot (couldn't tell I was told) in the kidney somewhere, but again small enough to just need follow up so far.
As for fat malabsorption, I was suggested to contact the biggest hospital to see if they do any tests for malabsorption test (fat in particular), didn't get any digestive enzymes prescribed as we don't really know what's causing the fat malabsorption (from the ultra sound the liver, gallbladder and duct along with the pancreas looked fine, could something have been missed by ultrasound?), only good thing was having the colonoscopy and gastroscopy booked for next Wednesday. Other Doctors could not really tell me what I am going through and suggested it might be stress related. Today I woke up feeling really good but after having gone to the loo started feeling funny again and had more red-colored spits, I am going to hand on and hopefully the endoscopies next week do not reveal anything serious, the only thing left after would be a capsule endoscopy for the small intestine, or a barium swallow.
Really need an answer... please help

liang
09-03-2013, 09:24 PM
Primarily the cause must be addressed, but if lipase is deficient in GI tract, that can be taken as a supplement. Fat soluble vitamins can be supplemented.

Met the GI specialist today - The small polyp found in the gallbladder seems to be less than 0.3cm so just need follow up so far, there's apparently a stone or calcified spot (couldn't tell I was told) in the kidney somewhere, but again small enough to just need follow up so far.
As for fat malabsorption, I was suggested to contact the biggest hospital to see if they do any tests for malabsorption test (fat in particular), didn't get any digestive enzymes prescribed as we don't really know what's causing the fat malabsorption (from the ultra sound the liver, gallbladder and duct along with the pancreas looked fine, could something have been missed by ultrasound?), only good thing was having the colonoscopy and gastroscopy booked for next Wednesday. Other Doctors could not really tell me what I am going through and suggested it might be stress related. Today I woke up feeling really good but after having gone to the loo started feeling funny again and had more red-colored spits, I am going to hand on and hopefully the endoscopies next week do not reveal anything serious, the only thing left after would be a capsule endoscopy for the small intestine, or a barium swallow.
Really need an answer... please help

liang
09-07-2013, 01:57 AM
Went to see the pulmonary specialist today - from my below average blow out rate (did the lung function test, I did indeed have some trouble staying exhaling) and symptoms he diagnosed me with light level of allergic asthma and prescribed Seretide inhaler to open up the nasal/throat passages and lung. I am not 100% sure of the diagnosis though as I thought if one was really suffering from allergic asthma the Eosinophil cells would be quite high and the patient would be coughing which I am not in either cases? Should I get a second opinion?

ladybud
09-07-2013, 09:08 AM
It is possible the gallbladder has stones that can't be seen. The GI could order a HIDA scan if all else is negative. That measures the function of gallbladder and can be abnormal even when other tests are normal. Your Dr sounds thorough and interested in getting to the bottom of this. Yes you can have asthma without cough and high eos, so I would just work with the inhaler for awhile and see if that doesn't help control that part. You are making good progress with the workup. You should have some answers soon with the diagnostic plan you have.

liang
09-12-2013, 10:42 PM
It is possible the gallbladder has stones that can't be seen. The GI could order a HIDA scan if all else is negative. That measures the function of gallbladder and can be abnormal even when other tests are normal. Your Dr sounds thorough and interested in getting to the bottom of this. Yes you can have asthma without cough and high eos, so I would just work with the inhaler for awhile and see if that doesn't help control that part. You are making good progress with the workup. You should have some answers soon with the diagnostic plan you have.

Finally did the big procedures (colonoscopy and gastrocopy, have to say the Fleet laxative I took gave me severe dehydration and had be given intravenous drips to recover, will check for renal functions in couple of weeks to make sure as I read some people developed problems from using this), while the colonoscopy did not find anything (thank god), there were apparently some signs of ulcers in the stomach (maybe in the duodenum too not sure) so the doctor did test for H.Pylori and will know the result when I see her next Saturday, could H. Pylori infection/ulcer be what's causing the gastro problems/malabsorption?

liang
09-13-2013, 01:31 AM
Had a look at the 2 blood tests I did (in August spaced between 3 weeks)
and noticed my Creatinine level (95 umol/L and 1.2 mg/dL) indicate estimated GFR level at less than normal level, although the abdominal ultra sound showed normal result I have scheduled to see a specialist to rule things out, should one still worry about lowered than normal GFR (even if it's greater than 60) if no kidney diseases or damages are seen? (my GP back in the UK did a urinalysis/dip stick test and showed normal readings without protein or blood in the urine)

ladybud
09-13-2013, 02:45 AM
Well, you are getting some answers, maybe not all yet. Certainly the ulcers would cause GI distress (pain, nausea, bloating, belching) but not malabsorption. It is good she did H Pylori test, and the ulcers should clear up with treatment. Did she do a biopsy of small intestine to check for celiac disease? That would be helpful, as that causes malabsorption. I still think a HIDA scan may be needed, but now that ulcers have been found, treatment of those makes sense, and ulcers usually heal in 4-6 weeks. Then you can see what symptoms remain to guide any further tests. You are making progress! Hope you feel better soon. The ulcer symptoms will improve beofre they are healed, so you may respond to the meds within a few days.

liang
09-13-2013, 04:06 AM
Well, you are getting some answers, maybe not all yet. Certainly the ulcers would cause GI distress (pain, nausea, bloating, belching) but not malabsorption. It is good she did H Pylori test, and the ulcers should clear up with treatment. Did she do a biopsy of small intestine to check for celiac disease? That would be helpful, as that causes malabsorption. I still think a HIDA scan may be needed, but now that ulcers have been found, treatment of those makes sense, and ulcers usually heal in 4-6 weeks. Then you can see what symptoms remain to guide any further tests. You are making progress! Hope you feel better soon. The ulcer symptoms will improve beofre they are healed, so you may respond to the meds within a few days.

Thanks for replying, I am not really feeling symptoms described for ulcers though so would be interesting to hear what the gastroscopy found in the stomach, and if any ulcers in the Duodenum was found as those may be the cause of malabsorption? Any inputs on the creatinine level? I am going to ask the specialist to do another kidney function test to make sure as it takes 3 test over 3 months to diagnose CKD, and would GFR level still mean anything if ultrasound did not show abnormalities of kidneys? (maybe the creatinine level is high due to the fact that I haven't worked out in 3 months due to all these symptoms and the loss of some muscle size released creatinine into the blood?)

ladybud
09-13-2013, 07:49 AM
Ulcers in the stomach and duodenum are quite common. However, ulcers lower in the small intestine are not and are a sign usually of Chrons or UC and do cause malabsorption. I think your next test should be a small bowel follow thru xray or CT scan or capsule endoscopy (if available). Your GI Dr seems willing to pursue this, so I would. If you do have inflammatory bowel disease, best to catch it early. I would not be overly concerned about the GFR, as that can change a lot from one blood draw to next. Not all kidney problems show up on ultrasound, as some as microscopic, but you don't need more nthings to worry about right now, and getting your GI tract in order seems the priority. You have had testing for parasites on stool exam, right? Very important if not.

liang
09-14-2013, 08:30 AM
Ulcers in the stomach and duodenum are quite common. However, ulcers lower in the small intestine are not and are a sign usually of Chrons or UC and do cause malabsorption. I think your next test should be a small bowel follow thru xray or CT scan or capsule endoscopy (if available). Your GI Dr seems willing to pursue this, so I would. If you do have inflammatory bowel disease, best to catch it early. I would not be overly concerned about the GFR, as that can change a lot from one blood draw to next. Not all kidney problems show up on ultrasound, as some as microscopic, but you don't need more nthings to worry about right now, and getting your GI tract in order seems the priority. You have had testing for parasites on stool exam, right? Very important if not.

Thanks again for coming through Ladybud! And yes have tested for parasites in stool 5 times (but none with preservative solutions) and nothing found (although to my knowledge if parasites were present Eosinophils and CRP would raise which none did in my case). Thanks for explaining GFR, I would get the specialist to run some test to confirm things as I had that horrible reaction to the Fleet laxative before the scopy procedures.
I am also seeing a urologist to check the bladder and prostate are alright as the colon/rectum specialist commented it was "slightly big", one might think I am being paranoid but as I am experiencing increased urination as well can't be too careful. The capsule small bowel exam is quite expensive so might try to get it done on NHS when I am back in the UK (good luck with that), I will certainly ask the GI specialist if she thinks there are any possibilities of IBD (unfortunately they don't seem to do tests on small intestine absoption here so will need to ask my GP when I get back to the UK, if no structural abnormalities are found but I do indeed have fat malabsoption then I guess just have to take enzymes before meals?
One thing I have been told by almost all doctors through all this is that lot of these symptoms might be nerve system related instead of actual structural abnormalities or conditions, for once I actually hope they are right and nothing significant and serious are found after all the exams and tests.

liang
09-21-2013, 03:55 AM
Got some more diagnosis/results back today - First of all my GFR/estimated kidney function is now at 94 which is normal. Breathing (through the nose) seem to improve one day almost back to normal then closes up again making it quite difficult to breath in and stay asleep. Frequency of urination hasn't stopped and I seem to be giving out at least 350cc everytime and at almost clear color. I talked to an urologist and nephrologist today about the possibility of diabetes insipidus but having seeing the latest blood test they don't think the possibility is high, none the less blood tests for potassium and sodium were ordered (they were really low when I had the bad reaction to the laxative causing bad dehydration) and a urination log given to record the time/frequency and amount of urine in a 24-hour period.
Also spoke to an endocrinal specialist about possibility of adrenal problem which could cause electrolyte imbalance and water loss, and also the 5-HIAA urine test to rule possible carcinoid out (which could cause some of the symptoms though I don't have the classic flushing so chance is very unlikely).
Finally the GI doctor who spent quite a bit of time with me, turned out I don't have ulcers but grade A GERD which could be the culprit of difficulty breathing and chest tightness and pink phlegm and globus sensation/ dry throat, Nexium was prescribed for a week to see if improvements are made.
(Although I really don't feel any heartburns at all so might be LPR I have instead?) Nothing found during colonoscopy although some small specks were not that clean as I had bad reaction to the laxative, but from otherwise everything clear. A small bowel serie has been ordered to rule out growth, inflammations and blockage in the small bowel.
So far I am happy that nothing major have been found, but the symptoms are causing great impact in daily life and making falling and staying sleep really difficult. The one thing almost all doctors mentioned has been mental stress and all the symptoms might be caused by malfunctioning nerve systems.
One thing I am really curious about is what would cause the clear/white and really gelatinous mucus in the nasal/throat area? I started using nasal irrigation and always wash out a lot of these (spit out from throat too)and my nose would feel bit better afterwards.
Thanks for putting up with me and helping.../

liang
11-10-2013, 10:27 PM
Still hanging on and trying to make sense of what's happening....

Looks like the strange breathing problem and stuffy nose (along with the sticky clear nasal fluid and phlegm) is most likely caused by a tracheal stenosis (seem in x ray, needs endoscopy work to confirm) and LPR.
Still not gaining weight (although the weight dropping seems to have stopped), looks like I am having problem absorbing fat and will need to have small intestine absorption tests and perhaps endoscopy/camera works done when back in the UK.
I seem to have lost 2/3 of my usual strength and my muscles get really sore and stiff after a workout which I would have considered a warm up a few months before, with some loss of fine controls and numb/tingles in the hands, will see a neurologist to confirm if there are any serious underlying causes.
I am getting so tired and frustrated with the whole thing... Just don't understand what could have caused the whole body to stop working properly and not recovering - Most of the doctors think it's automatic nervous system related but any other idea what could have caused all this?

ladybud
11-11-2013, 08:58 AM
One other thought to rule out-There is a hereditary condition called alpha-1 antitrypsin deficiency. It can cause asthma-like symptoms, GI trouble, weight loss, and is a hereditary condition, but often goes undiagnosed. People often have respiratory infections, and sometimes liver problems. I would make sure you have had liver enzymes checked, and the deficiency is checked by a blood test for alpha-1 antitrypsin. It is easy to rule out.

liang
11-12-2013, 08:12 AM
Thanks for suggesting that. The one other strange thing was from the GI scopy works it showed that I also had duodenal ulcer but has now formed scar, yet the H.Pylori biopsy came back negative, what else could have caused it? (Might get my Gastrin level measure to rule out Zollinger-Ellison, as I seem have have LPR as well).

The neurologist did some tests and did not think I have neuro-related diseases, but to be sure some blood works have been done, he wasn't sure of the cause of such systemic symptoms either (The difficulty and stuffy nose could be caused by LPR, the IBS/tenesmus feeling seemed more to do with malabsorption towards fat and not sure about the muscle weakness/stiffness and twitch though, maybe related to not enough vitamins been absorbed?)