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The Beginning - Good Enough Of A Diagnosis

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I'm sure there will be more to this as I continue to see my new GI this year, but I really want to put all I have learned these past 9 months in the attempt that someone as lost as I am can read this and help piece together what could be happening with their body.

 

I've had loose stools close to 4 years, with doctors always pointing at IBS.  Last september I got the flu and it went downhill from there.   Heart palpiations, inflammed eyes for weeks, stomach pain loose watery stools, and I was losing weight fast.  In 6 months I went from 160 to around 135.  During that time the specialists at the University of Arizona Medical center were thinking thyroid or cancer, or maybe crohns.

 

I have undergone: 

 

several thyroid tests

ekg test

complete metabolic panel

celiac panel

complete celiac panel

5-hiaa tumor marker urine test

Vitamin d, b12, folate tests

endoscopy with biopsy

colonoscopy with biopsy

fecal fat stool test

parasite stool test

calprotection stool test

more recently HLA genetic typing test for Celiac

more recently CT scan with barium and IV for imaging

 

what results we've gathered this far:

 

Vitamin d low (was around 28, lowest recommended on test is 35)

Vitamin b12 very high (double the average)

calprotection at 150 (indicating mild inflammation)

my platelet count low

endoscopy revealed flat duodenum surface, biopsy however was deemed normal

colonoscopy had raised eosinophil count in patchy areas on one part of my colon, biopsy again deemed normal.

 

My genetic marker came back extremely elevated for chances of celiac:

 

DQ2  DQA1*05:01/05:05   positive, one copy

         DQB1*02:01/02:02   positive, two copies

 

 

I have been self diagnosing for months, constantly paranoid thinking my pancreas was dead or my liver was giving up, even switching to the paleo diet my symptoms substantially reduced but the stools and weight are deeming to still be a problem.  The doc always reassures me of the good things (your ct scan is normal, fecal fat normal, colonoscopy normal)  but no single doctor will confirm a diagnosis,  so I guess you can say I'm going to start by telling myself first and taking my body under control with good food and positive family network.

 

 

My current GI is awesome, has an extended background in gastrointestinal diseases and has written several notes reviewing that I cannot injest any medication with gluten, he does also believe I may have several other food intolerances that could be eosinophilic type disorder, or NCGI, or just maybe an unsual case of celiac.  What sucks is he says part of it is just a waiting game to see improvements.

 

I'm tired of waiting, tired of whining, tired of being a lab rat.  I know I can no longer have gluten, possibly all grains for that matter, and I feel good to say that. 

 

 

I'll be using this topic window to place updates on if I ever reach a diagnosis,  the worst part of this whole experience is having all these problems and feeling so alone when the doctors cant find a cookie cutter picture of what I may have. 

 

Thanks guys, your advice and tips have always been a beacon of hope in this journey.

 

 

 

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Is it possible that you have something else, like maybe an Immune Deficiency, low IgG subclass 3 or something else?  In my research, all of the reports I've read said that about 40% of the world population has the genetic markers for celiac disease but not all of those that have the genes have celiac disease, which is what it sounds like might be what is happening to you?  You've had all the celiac disease testing and it's all negative so maybe consider other causes? 

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The eosinophils seen in the biopsy would point towards an allergic response.  You might want to look into allergy testing.  I am assuming you had a CBC ( complete blood count) since you know your platelets are low, was your eosinophil count on your differential normal?

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Hello y'all,

Sorry Beth I forgot yes they snuck in a cbc test with C-reactive protein and sed rate when they were prodding at my thyroid. Aside from my platelets being low, my blood is a perfect average . My eos was 2 with reference levels 0-5, and my absolute eos was 0.1 with reference levels 0.1-0.4.

Yea smri, my celiac panels are showing negative, the only slightly elevated number was my serum igA, which came back 396, reference levels 91-414. Wouldn't the immune igg show up on my blood or celiac panel?

They won't say celiac since my blood shows negative, they won't say crohns colitis as the imaging, biopsy, and blood have no inflammation markers, but we can identify gluten is a terrible trigger. If I get Glutened food passes right through me and I start to get a little insomnia and stomach pain. He's pushing a possible egid only because I'm not healing as fat (so his claim) to how I should be my age. I don't account that for fact, I'm 25, for whatever that means.

I'll post my history of symptoms shortly, thanks again guys

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Sorry for being nosy but I used to be a lab tech before I got really sick and the scientist in me is curious.

 

I am not trying to freak you out, but what testing have they done since they found out that your B12 level is twice the normal limit?  I noticed that they did a 24 hour urine for tumor markers, have they also done a bone marrow biopsy?  A few types of leukemia and Polycythemia Vera can cause increased B12 levels.  The Polycythemia would explain the increased B12, but then you would also have increased white blood cells, red blood cells, platelets and hemoglobin.  The main leukemia that would cause the increased B12 and decreased platelet count would be CML but you are very young for that, usually diagnosis is in the middle to late 60's.  What was your total platelet count?  ITP could explain the decreased platelet count but not the increased B12. Once again I am not trying to scare you, just trying to see the whole picture. It seems they are starting to look in the right direction, you just don't want one thing to fall through the cracks if you have multiple processes going on while they are concentrating on the other. There is a problem with that increased B12 level, I wouldn't give up until you have a solid reason why.  Most of us have a deficiency in B12 not the other way around. 

 

You obviously have a problem with gluten. If they are going to do a repeat endo make sure they are taking a lot of biopsies, 6-8 of them.  What were the tests that are a part of their "celiac panel"?  It seems to vary from institution to institution, some only doing the basic tTg IgA and a total IgA. Where you still eating gluten when they did the original testing and biopsy?

 

I know this is frustrating not having a clear cut answer to what is wrong, but at least you have a doctor that is trying.  It sucks that a lot of us have to come here for help to try and figure out what is wrong with us while the doctors get paid to do just that. But then again, they call it "practicing" medicine for a reason.   

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Thanks Beth,

No offense taken, the professionals use me as a lab rat, I very public about my unknown disease, gotta take it by the facts!

The 5 hiaa test was included with all metanephrines and catecholamines, again to review any possibly of calcium buildup or neuron doctrine tumors. Her conclusion was I was healthy normal person, never seen her since.

My current gi suspected high b vitamins from my own vitamin intake, at that time it had been almost 3 months of me taking a multi vitamin, vitamin d, fish oil, milk thistle, and bluebonnet vitamin b 50 complex, which had 800% of daily vitamin b12. That was in April, I have since stopped all vitamin intake since they claim my body is processing food without the need. ( uh hello I can't gain weight? Lol).

It's extensive but heres my cbc:

Parentheses show reference intervals

WBC 4.7 (3.4-10.8)

Rbc 5.12 (4.14-5.80)

Hemoglobin 15.5 (12.6-17.7)

Hematocrit 46.8 (37.5-51.0)

Mcv 91 (79-97)

Mch 30.3 (26.6-33.0)

Mchc 33.1 (31.5-35.7)

Rdw 12.6 (12.3-15.4)

Platelets 124 (155-379)

Neutrophils 55 (40-74)

Lymphs 34 (14-46)

Monocytes 8 (4-12)

Eos 2 (0-5)

Basos 1 (0-3)

Absolute neutrophils 2.6 (1.4-7.0)

Absolute Lymphs 1.6 (0.7-3.1)

Absolute monocytes 0.4 (0.1-0.9)

Absolute eos 0.1 (0.0-0.4)

Absolute baso 0.0 (0.0-0.1)

For the celiac blood test it may have been all a wash, I had already been trying to go gluten free 2 and a half months before the doc thought it was a good idea to draw blood.

My complete panel tested for

Serum iga

Gliadin abs iga

Gliadin abs igg

Ttg iga

Ttg igg

Only my serum iga was midly elevated the rest fell under negative.

My surgery could have been done better IMO, the doc had seen the duodenum flat but only took out one sample. Yea I've heard for a few people it required several samples for comparison.

I can't this is debilitating, I still have a full time job and go to school, but like you mentioned, from a science perspective this rattles my skull. I have to wait until I renew with a different instance plan but my coworkers have also asked if I've done an allergy test. I've always placed that on the bottom of priorities as both gis said it's highly inaccurate.

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Ok.

 

I will start with the easiest, the platelet count.  Your platelet count is low, but it's not that low.  A number of factors could cause a platelet count of 124,000.  One would be that they didn't properly mix the vial of blood causing improper mixing of the anticoagulant ( EDTA) in the tube which would cause the platelets to clump and cause an inaccurate platelet count ( some people are also just platelet clumpers, they have abnormal proteins in the blood that cause platelets to stick together).  If platelets are clumping together it is harder for the instrumentation to get an accurate count.  If they didn't do a manual differential ( actually look at your cells on a slide), platelet clumping can be missed. With your CBC being normal besides the platelet they might have just used the machine automated differential.  Have you had more than one platelet count done?  If you are clumping they can draw your blood with a different kind of anticoagulant ( sodium citrate), they have to do some manual calculations but it gives an accurate platelet count.  Large platelets can also cause a falsely decreased platelet count. If they are large, the analyzer sometimes will count them as lymphocytes.  Most doctors aren't going to get their panties in a bunch until the platelet count drops below 100,000.

 

If you are going to have a repeat endo ( with the proper amount of biopsies) do the gluten challenge and have the Endomysial antibodies drawn otherwise it is really pointless, in my own opinion that is.  If they want to learn something new it should be properly done.  But if you really feel like gluten is your problem, do you need the validation?

 

Hopefully your GI repeats the B12.  If not, ask what is a normal time frame for that level to go down after taking too many supplements and ask for a retest.  This is important.

 

If you have an Immuno Deficiency, they would need to draw an immunoglobulin panel ( IgA, IgG, and IgM).

 

The weight loss, I have no clue what to tell you. I am having problems myself.  I have had weight fluctuations my whole life since I was 13.  I grew a crap ton (6 inches) when I was 13 over a period of three months and ended up weighing 111 pounds.  Being six foot tall and that skinny is kind of gross. I stayed relatively thin until I was 20 and then the yoyo started.  My worst weight was 318, that was a little over 2 and a half years ago.  I am at 150 right now.  I was losing about 4 pounds a week, but have managed to keep that at 2 pounds over the last month. It's funny because my doctor wasn't worried the last few years over my weight loss even when I told him I hadn't changed my diet or exercise one bit and now they are worried.  I didn't tell him I have been eating like crazy just so I wouldn't lose too much, they were going to stick me in the hospital for TPN therapy if my weight loss didn't slow. Right now I have been sick again and not able to eat so when I go back to the doctor in 11 days it might be a different story.

 

Hope some of this helps.

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Hello y'all,

Sorry Beth I forgot yes they snuck in a cbc test with C-reactive protein and sed rate when they were prodding at my thyroid. Aside from my platelets being low, my blood is a perfect average . My eos was 2 with reference levels 0-5, and my absolute eos was 0.1 with reference levels 0.1-0.4.

Yea smri, my celiac panels are showing negative, the only slightly elevated number was my serum igA, which came back 396, reference levels 91-414. Wouldn't the immune igg show up on my blood or celiac panel?

They won't say celiac since my blood shows negative, they won't say crohns colitis as the imaging, biopsy, and blood have no inflammation markers, but we can identify gluten is a terrible trigger. If I get Glutened food passes right through me and I start to get a little insomnia and stomach pain. He's pushing a possible egid only because I'm not healing as fat (so his claim) to how I should be my age. I don't account that for fact, I'm 25, for whatever that means.

I'll post my history of symptoms shortly, thanks again guys

 

They did not do the immune panel unless you just didn't add that.  The tests are similar to celiacs but not the same.  They should have run a full IgG, IgA, IgE, etc.  They need to specifically run the IgG subclasses, there are 4, as well.  Your total IgG could be normal but you could be low in one or more subclasses.  

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If I am reading this correctly, I understand that you have flattened duodenum.  I don't know how that could be deemed normal.  The duodenum, I believe, should have villi, fingerlike projections, not a flat surface.  Perhaps you should get clarification from the pathologist, or ask your provider about it.  If it were me, I would take the report and get a second opinion.  Feel free someone, to correct this if I am not correct.

 

Dee

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Thanks smri, I will have to look into those tests when my new insurance kicks in.... I would floored if my immune system could cause all this. But then again everyone else thinks I'm ok and a burgers never hurt anyone, sweet lord lol.

Yea ladysaved, we'll that was what the gi doc described. He visually saw what appeared as damage, But he only took one sample back which showed normal.

I may or may not have celiac. Maybe it's several things, but I can't argue gluten is a huge factor in all this. I would like to use this window as an online record of what I've found, maybe there are some that can relate.

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My story of symptoms:

 

I've had loose/foul stools since summer of 2010, doctors pointed as IBS

mid 2011 - sleeping problems , melatonin/cold dark room helps.

 

Over the next few years I would get a cold every couple of months, my parents would say it was like clockwork.  Usually left after a few days.

 

SEP 2014 - violent flu, pink eye

OCT 2014 - urget care says it conjuntivitis, goes away in 12 days.

 

 

NOV 2014 - IT ALL STARTS, almost overnight :

 

Heart Palpitations

Extreme Insomnia

Anxiety/Depression

Upset stomach/ gnawing burning feeling

Nausea

Urgency to use bathroom

Weight loss / im sure malabsorption

Sensitivity to light

Sensitivity to sounds

Sometimes using the bathroom 2 times a day

Weight loss

Very pale skin

Fluffy light colored stools, often in pieces undigested

 

JAN 2014 - I didn't think it was my diet until close to new years, when I promised myself no gluten and no dairy.

I still glutened myself several times, and even when I was keeping gluten/dairy free symptoms would tend to cycle back.

 

FEB 2014 - I finally caught rice and quinoa would cause extreme burning and lots of undigested food, i had to cut them out.

MAR 2014 - started paleo diet

 

JULY 2014 - fastforward a bit, I still have problems but the violent survivalism aspect to it diminished

 

Current symptoms:

No weight gain/ loss (i'm stuck at 142 pounds)

some noise/light sentivity (I still need a dark room for sleep)

I could sometimes sleep all day for no reason

My stools are solid, i go once a day max, usually every two days, the color/smell can still be all over the place.

slight urgency right before Im on the toliet,  very odd to describe.

Some of the worst smelling gas on god's green earth, still can't find cause other than eggs.

 

Hope this helps for others

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Aw! my cousin works for UMC and they were not able to diagnose her. She went gluten free since her mom went gluten-free per the advice of a chiropractor and had an excellent recovery. With my official dx, and sharing the same autoimmune- infested genetic line, we think that celiac or NCGI Is applicable to her. She is doing well except when she accidentally gets glutened.

Good luck to you!

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thanks again Cycling Lady, my intolerances are slowly changing so I'm testing the waters with an elimination diet... so far so good, only on day 3.

 

 

For anyone out there who is also looking for a diagnosis or knows they're not crazy when doctors are saying its nothing and your young and healthy and making it up..... I would like to provide the colonoscopy/endoscopy results and biospy results  when I was at my absolute worst, its extremely surprising how minimal change your body goes through to cause such terrible symptoms. 

 

AGAIN SO FAR I AM NOT DIAGNOSED WITH CELIAC, GI IS PUSHING I HAVE NCGI POSSIBLY EOSINOPHILIC DISEASE, MORE TESTING IS STILL REQUIRED BEFORE DIAGNOSIS.

 

 

Procedure: Upper GI ENDOSCOPY

FINDINGS:

 

-The nasopharynx and oropharynx were normal.

- Localized mild mucosal abnormality characterized by sloughing of mucosa was found in the upper third of the esophagus.

- The Z-line was regular and was found 40 cm from the incisors.

- Diffuse mildly erythematous mucosa without bleeding was found in the gastric antrum.  Biopsies were taken with a forceps for evaluation of celiac disease. 

 

IMPRESSION:

- Normal nasopharynx and oropharynx.

- Esophageal mucosal abnormailty characterized by sloughing of mucosa.

- Z - line irregular, 40cm from the incisors.

- Gastric mucosal abnormality in the antrum characterized by erythema. This was biopsied.

- Flattened mucosa was found in the duodenum, suspicious for celiac disease.  Biopsied.

 

 

COLONOSCOPY

 

FINDINGS:

 

- The perianal and digital rectal examinations were normal. Pertinent negatives include normal sphincter tone, no palpable rectal lesions, normal prostate (size, shape, and consistency) and no anal lesion or abnormaility was detected. 

- Internal hemorrhoids were found during the retroflexion and were small.

- The exam was otherwise without abnormality on direct and retroflexion views. No evidence of acute or chronic inflammation.  Biopsies taken throughout the colon to rule out histological colitis.

- The terminal ileum appeared normal.  Biopsies were taken with a cold forceps for histology.

 

IMPRESSION:

 

-Internal Hemorrhoids

- The examination was otherwise normal on direct and retroflexion views.

- The examined portion of the ileum was normal. This was biopsied.

 

 

 

This was done back in March of this year.  I'll be posting my biospy results when I get a chance.  You wanna know what my doctor wrote to me after the procedure was done? 

 

Your pathology reports showed: No worrisome findings.

 

YEA OF COURSE THANKS DOC, lol.  Hope this helps folks!

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**********<<<<<<<<<<<BIOPSY RESULTS>>>>>>>>>>***********  (from back in March 2014)

 

Final Diagnosis(es):

 

Duodenum, biopsy: Small bowel mucosa with no histophathologic abnormality.

Stomach, biopsy:

             Reactive/chemical gastropathy.

             No H. pylori organisms identified.

Terminal ileum biopsy: Small bowel mucosa with benign lymphoid hyperplasia... 

Cecum, colon, biopsy:  Colonic mucosa with patchy mucosal eosinophilia.

Right ascending colon biopsy:  Colonic mucosa with patchy mucosal eosinophilia.

Tranverse colon, biopsy: Colonic mucosa with no histophathologic abnormailty. 

Signmoid colon, biopsy:  Colonic mucosa with no histophatologic abnormality.

Rectal colon, biopsy: Rectal mucosa with no histophathologic abnormality.

 

I am currently seeing a different GI than the one who performed these images for a second opinion,

we are currently pushing NCGI with possible Eosinophilic colitis/enteritis influences.

 

My symptoms are generally minimal, and I haven't been taking  any medications or steroids,  the doctor has wants me to do a food journal.

With my insurance on a standstill I've started an elimination diet 3 days ago, and things are generally feeling better.  Lets cross the fingers on some weight gain people!

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lol.....  there are days i'd like to take you up on your offer,  my shoulders and lower arms are almost down to the bone.

 

 

So since Sept 22nd I've started a full elimination diet.  Avoiding the "top 8" plus others people contest with pain,  my foods are down to:

 

Chicken or Turkey

Kale, various lettuces, Chard

Summer quash, zucchini (steamed)

Carrots (steamed)

Sweet potatos (baked)

 

At first it felt like a great improvement, I found broccoli just does not agree with me at the moment...... but the past 48 hours has me stumped!

 

Sunday night my room mate said some extremely stupid things, which led me being so upset I had to wonder Target for no reason just to calm down.  The past 48 hours my stools have gotten worse,  loose, small pieces of what i think is boiled carrot, smells.  

 

That's really it, no other crazy symptoms, but the stools really look like when I was feeling much worse like from last year.

 

 

 

Would temporary stress cause such a delayed reaction?  hhmmm or maybe my body isn't digging the starches?  I started eating sweet potatos as a prebiotic food and weight gainer.   I'm going to continue the elimination diet and check for any improvements.   no other symptoms, stools just took a step backwards....

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Thank you gluten-free lover,

 

Some of the loose stools have calmed down since my stress attack (about a week ago)  but I've begun to get occassional gnawing pain at the center of my abdomen, just to the right of my belly button ( from my direction) .

 

My elimnation diet, however, has reached a plateau,  I actually feel like it could be getting worse.  To recap, since August 22nd I went on a restrictive diet on foods I've had minimal symptoms which was:

 

 

Chicken

Kale  (sauteed)

Sweet Potato (baked)

Zucchini (steamed)

Romaine Lettuce (sauteed or raw)

 

I have already caught undigested sweet potato skins in my stool,  the past 3 days I've eaten them skinless,  that's seemed to help a little. 

 

For my own sanity i've been looking into the past topics of poor souls similar to my situation,  (example past topic I was lookin it:  https://www.celiac.com/gluten-free/topic/71791-elimination-diet-making-me-sick/  )

 

 it looks like it could maybe this could be an issue with too much sweet potato or kale in general.....  Everybody keeps saying go vegan but I cannot handle beans or broccoli at this time....  its like two steps back sometimes!

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The gnawing may be hunger, your not eating much.  And yes, dump the sweet potato skins (forever).  If you want to try applesauce, make it yourself.  Only whole foods.  Have you made chicken and noodle soup, something like that that's easy on the tummy but filling?  Try making Zoodles ( noodles from zucchini.  Do you have vitamin deficiencies?  Are you supplimenting? If so, they can make tummy growl too.  Can you eat eggs? Cheese?  IMO cutting out a ton of stuff all together can make you afraid to eat anything and every little pain can mean that you can't eat it.  It may not mean that at all.

 

Just some thoughts for you.  Hang in there.

 

Colleen

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I'm back for another post!  Sometime around today marks the one year marker since I first had violent symptoms, events i'll never forget.  I'm still waiting on new health insurance this november to continue testing, but here's a recap of where I stand:

 

On month two of elimination diet,  I had to cut out sweet potatos completely as my loose fluffy hot stools were coming back,  I've since replaced with spaghetti squash with no problems.

 

My goal is to start the introduction diet under the Specific Carbohydrate Diet guidelines

Thank you Colleen on the Zoodle tip, I have also made chicken soup with zucchini noodles with no problems.

 

The most depressing aspect was my weight one year ago was 165lbs, I currently am tugging to keep 140lbs on me.  I'm sure the elimination diet isn't of any help,  (again I think you're right Colleen the hungry stomach may just mean not enough calories)  Ive been doing a food journal and it looks i'll need to be putting down 4-5lbs of chicken with plently of olive oil or coconut oil for caloric support

 

my current elimination diet is as follows:

 

Chicken

Spaghetti squash

zucchini

kale

lettuce

extra virgin olive oil

coconut oil

roiboos? organic herbal tea on occasion

 

 

My stools have not shown much improvement, they look much better since the sweet potatoes are gone, but still frustrating...

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I firmly believe my new specialists advice that since eosinophils are involved in a small section of my colon,  I am stuck with an unknown autoimmune condition (probably eosinophlic gastroenteritis or eosinophilic colitis) on top of never touching gluten again.  It scares me sh!tless but I'm ready this winter to ask for the possibility of starting steroids or a immunodepressant, something low dose of course, but in the hopes it will help push for healing as I continue my dietary restrictions.

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The elevated eosinophils in your colon are certainly suspect. . . Is your new doctor by chance willing to do a repeat colonoscopy with biopsy to look for further evidence of eosinophil infiltration (or lack thereof given your elimination diet)? Otherwise, would s/he repeat the colonoscopy + biopsy after a trial course of steroids/immunosuppressives? 

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Hello Ninja! 

 

Thanks for the reply, I have been a bit distant from the forum atm but i've been so busy with school and I was going to wait until around this time to continue review of my monthly elimination diet/ update of symptoms. 

 

Since my last appt in August for my CT/barium scan that came back normal,  I've been without any medical insurance.  I was dropped from my parents, and I have to wait until November before I can reapply on my own.  During this time I thought it would be perfect to try a very monitored diet and write every month with anything I happen to notice. 

 

The last time we spoke he recommended if things don't clear up or seem to get better on their own to come back and we would try a round of steroids, and reconfirm my levels of inflammation with another calprotectin test.  From what he says from his experience, his "other eosinophilic patients"  go through life just fine after they tackle what their food triggers are, and when things occassionally get bad to use a very low dose of steroids.  It kinda sounds like he's trying to comfort me, I think he recognizes I don't take much bullsh!t after the previous GI experience and either you tell me I have something or not,  I'm not paying them so they can read my food journal for 5 minutes and agree I'm doing a good job....

 

aside from the rant,  when my insurance comes back I plan to do a few things:

1.  its been a year since I first had terrible symptoms, I would like to know how my vitamin levels  - metabolic panel is doing.

2.  nobody has yet to confirm the amount of bile or pancreatic juices I'm producing,  I would like a medical confirmation that these things are producing adequate amounts (considering this based on how much stools still look funny)

3.  I would like to get retested for SIBO, the test the originally did was breathing through a tube and thats it, I didnt eat before or drink mannitol or fast or anything..... how would they have known at that moment without any preparation?

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