I need some advice/second opinion.

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So for years now, i have had on and off Diarrhea it would come for a few weeks then leave and repeat. Since December it has flared up severely, i have been needing the toilet 8-10 times a day, always runny on a rare good day i might need to go 3-5 times. 

Currently i am slightly confused, my Diarrhea is always either watery or at the hardest the consistency of mash potato, it often has hard white chunks and other bits of undigested food in the stool. In the past 2 weeks i have seen mucus in the stool also. I have been getting bloating, cramps, some odd stabbing pains, burning eyes, swollen lymph nodes and a B12 deficiency.

The doctor has me on an elimination diet, he thinks i might have a food intolerance. However i have had a Colonoscopy and Gastroscopy and both came back fine. I have also been tested for Celiac and that came back fine. I have had multiple blood and fecal tests and all have came back fine for stuff like white cell count. No food seems to trigger it, just eating food seems to do it.

This is starting to impact my life quite hard, i am 17 and in school, and it has required me to miss quite an amount of school and all my sports, i have also lost 20 kg, i am down from 70 to 51kg, i am 6''3. 

I am almost confident at the moment that it is an issue with my small bowel or something else ulterior, the elimination diet i have been on for 2 weeks has not helped a single bit. But the doctor does not want to do the MRI because he said in my stool tests there was no sign of inflammation so it is almost impossible that there is anything in there.

The doctor has ruled out IBS he said it is too severe and i am suffering from non IBS conditions. But at the moment i am almost getting the feeling that the doctor is not believing me or something like that, he seems so skeptical of whats wrong with me. He does not seem to understand how severe these symptoms are to me. I need some help from people who have experienced such issues which is why i came to this forum, i simply have no idea what is wrong with me or where to go because i have drained almost every path to look into.

Would i be wrong to say there is a chance of there being Crohn's in the small intestine, or pancreatitis or such diseases. Symptoms from so many diseases seem to match what is going on with me, but most are being ruled out from the tests.

Thank you.

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8 Replies

  • Posted

    Hello, get a second opinion. That is the road I am on. When the doctor you feel isn't listening to your concerns get on to another more qualified doctor.

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  • Posted

    Hi jai3158

    Have you tried changing your diet completely you may be gluten intolerant or lactose intolerant...try going gluten free, lactose free, caffeine free, wheat free, use probiotics for your gut flora and leave out spicey and fried food, citrus fruits, fizzy drinks and drink water and herb teas. Eat chicken roast with a little olive oil and water, fish and some red meat, veggies careful with sprouts, cabbage and broc not too much as they cause gas also fruit not too much as it ferments in your gut and causes gas. also gluten free bread and other foodstuffs which you can get at popular supermarkets at the 'free from' section where there is gluten free cake, bread, sweets, crisps etc. and lactose free section...where there is lactofree milk, cheese, yogurt, etc., get yogurt that contains probiotics also there is a fridge section 'free from' pizzas and a whole variety of other foods..its a bit more pricey but what price your health!! also use multi vits......over time your digestive system should improve greatly..but give it time it could change in weeks...try and help yourself to relieve your awful symptoms..when you have tried this diet change over time and you still have the adverse symptoms then you can safely go back to your doc and tell how you have tried to sort out your problem and how...try not to eat junk food....my best wishes to you..bon appetite...

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  • Posted

    Your symptoms do sound like IBS D or bile acid malabsorption.  See another doctor and ask for a SECHAT scan which picks up BAM.  Often this condition is missed.  If your symptoms come on with eating and you have food particles in your stool, this would suggest that you have a food intolerance.  Persevere with the elimination diet.  It can take a long time to uncover a food trigger. However, if every test shows up negative, the diagnosis is IBS.

    A colonoscopy and gastroscopy would pick up Crohns if you had it.  If nothing showed up, it would suggest you don't have it.  Were you tested for microscopic colitis?

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  • Posted

    Hi jai.

    Your symptoms are exactly same as mine addition I have nerve issue. But my doctor said it is IBS, still I don't believe. Lymph node swelling can occur only if you have infection.

    Which lymph node is swollen ? Are your medication from gastrointestinal helping you ?

    If not i recommend you to check with naturopath. For some people those are helping out.

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    • Posted

      I second a naturopath to consult!

      There are though as different as 'docs' are. You can get beautiful knowledgable ones, and then the 'one shoe fits all' ones too, who deny any western med to mix in with if needed.

      We have a fully trained western medicine doc as naturopath (look at their training please) and was a life saver! She did look at the existing western fixable problems (like e.g. a good parasitic stool repeat workup) as well as to more supportive measures. 

      I have sent a message to jai as I expected my answer to be deleted publicly. All the best jai!

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  • Posted

    Oh poor you!

    Pancreatitis would be a first step in blood with Amylase and Lipase test (cheap), you would have probably fever, pain and nausea, too. Hope you have printed out blood results to check, if one or both parameters were done.

    Have you had a good parasitic stool test? 

    Looking for culture, but also PCR tested pathogens.

    There are 3 day collection parasite tests and not all labs do them, despite docs not ordering them.....

    Often they are then done, when first usual basic pathogen stool test (bacteria, parasites, ova) came back negative, but symptoms like diarrheo persist.

    Mind you, we needed a normal, western medicine GP with a hang to naturopathic treatment, to offer that 3 day parasite concentration test, which is a normal western medicine test......

    So yes to second opinions!

    Blastocytitis hominis and entamoeba histolytica need to be excluded too.

    Don't forget giardia. (I had this darn protozoa, it was massive green diarrhea, but also pain)

    (please always get a written result as a copy for yourself. 'tested' does not mean 'tested', you need to see what exactly was tested and also know, that some tests are not 100% in result, sometimes false negative, sometimes false positive....it always needs all results and clinical symptoms together, other tests and repeats to get the whole picture, if something is not straight forward.

    Docs often take lab tests far to literal and 100%, I am a med scientist, I did many lab tests, there are tests, which do lack sensitivity or specifity, .... it's a clue for a whole picture, but not the sole answer. Lyme disease for example a huge disaster in diagnose btw regarding sensitivity and specifity.)

    Also having a printed version is great, if you change docs to present what you have gotten.

    You can also do (a mostly privately to be paid and heck not cheap)

    faecal microbiological analysis (FMA).

    This is very different from that mentioned pathogen stool test above (routine).

    It assesses your whole gut flora in %, including the good bacteria and looks where deficiencies are and can take the good bacteria flora accordingly/specifically, not blindly.

    If you don't have a proactive doc (as we had too), you need to search the internet beforehand and see if you a) wanted that test b) can afford it c) where to get it done and go with this info to doc. Sometimes those labs can tell you, which docs would be helpful in your area, if interessted.

    Probiotics are never a mistake (unless you are lactose intolerant and have a lactose based probiotic....),

    but again the content can be very different from strains to amount.

    We are currently trialing 15billion LGG. (For SIBO the Saccharomyces boulardii would be added for example together with antibiotic treatment)

    "All is excluded"...is often not possible per se, 'all is not known yet' is rather the correct statement.

    In your case you seem to have a lot of open blank spaces as explanations still possible even within the normal basic testing range, not even talking very exotic and rare constellations (AGID, AAG).

    Someone mentioned bile malabsorption and I think that's a great idea to get checked with your symptoms! (search internet if it made sense)

    An MRI doesn't say too much, even an MRI enterography.

    They are ok once a Crohns diagnose is established, but if you had for example tiny coin sized areas, they won't show up.

    You probably had the stool calprotectin test (?),

    which is an awesome (WBC protein) test, but it is false negative in 2-8% of young people and no, not all IBD (like Crohns and others) sit in the large colon or at the illeocecal valve area, where they can be seen via colonoscopy. But most do, so it is a valid procedure of exclusion that way as a starting point.

    We had the same big discussion with gastroenterologist who took a one off  calprotectin lab result far too 100%. I can understand to take it as a 'result for now', but leave a tiny option open for the rare and small amount of people, who are different from 95% of test results and locations regarding IBD. 

    It's good to have a normal colonoscopy,

    it's good to have a normal calprotectin,

    but no, it is not 100% ruled out yet, but very unlikely.

    You hence first need to look e.g. into other reasons after those tests (like food intolerances, bile malabsorbtion, parasites) and then can come back to it (capsule endoscopy maybe warranted, when ongoing symptoms for years - sorry to say-, it won't be done now, I doubt. Especially if the general inflammation markers CRP, WBC were normal. Crohns usually -again not 100%- but usually causes high CRP, whereas ulcerative colitis does not. Yet UC sits in colon for sure.....so I kind of can understand your doc not insisting on more Crohns test....for now.)

    Food intolerance tests via breath tests, have you looked into them?

    Fructose, sorbitol, lactose....

    Lactulose for SIBO,

    we didn't need lactose/fructose/maltose as colon biopsies showed normal levels of the correlating enzyme in gut wall (well, we had fructose neg breath test beforehand, so it correlated well)

    (what kind of tests did your colon biopsies get?

    Again not everything is looked at when biopsies come back 'normal'.

    I have worked in histology, there is so much more to it and not done in routine work up, which is fine!!! as a starting point and very important to look for inflammation, ulcers, tumors.....

    Our biopsies only had hematoxillin stain, looking for tumors, inflammation, the basic workup.

    But no e.g. CD117 immune histochemical stain (mast cell) or for immunglobulin (there are enteric autoimmune antibodies out there, extremely rare)

    But our biopsies did get an enzyme workup for lactase, maltase, fructase! Hence covering some of the oh so suggested food intolerances.

    Did your biopsies get that too?

    Again you need your printed biopsy result, to read for yourself, what was tested.

    If those enzymes were done, you don't need a breath test to the according substrate and an elemination of e.g. fructose diet will make no difference if you have no fructose intolerance, but enough fructase in guts in the first place. Unless boarderline.

    Elemination diets are a good start, yet again, very time consuming as you will need to go through each for 4 weeks minimum.

    Cut out all sweetened (no matter if normal household sugar or artificial sweeteners) drinks please.

    We for example can't handle meat, rice which others can handle fine. There are diets that exclude ALL grains, we had huge problems with it (that would be a Crohns diet btw). My daughter has the oposite of yours, a slow gut, inertia. So all those diets especially fiber can cause a huge upset in her case, maybe good for you?

    Diets are very very individual and no one shoe fits all.

    A pain to trial, but worth to trial.

    You need to address your known deficiencies, even not knowning the cause, but I would recommend VitB skin patches. You don't want to run into a catch 22, like malabsorbtions causing malfunctions of gut.

    First things first,

    I would look up which stool pathogens were looked at and if it included the forementioned parasites and test principle (PCR!).

    All the best!!!

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