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So where we last left our hero she had a lot of blood work done, which showed nothing significant. Fecal fat test (gross) which showed more fat than it was supposed to so the doc said you have a malabsorption disorder. Okay great now what. So then we did a colonoscopy which turned up nothing. An endoscopy which turned up nothing. Then we did the pill cam endoscopy which showed that I have "nonspecific ulcers" in my small bowel. Okay great now what. So then we did a blood test for Kron's disesase as well as Ulcerative Colitis. Negative on that. Official diagnosis: malabsorptive disorder, nonspecific ulcers, and chronic hemmoroids. I was given no course of treatment, just told not to use ib profen because that would aggravate the ulcers and told to come back if I had any other problems.
Considering the doctor had no bedside manner, offered no real reasons or treatment...I haven't been back. I still have some stomach issues some weeks are better than others. Some days I go to the bathroom frequently other days I'm constipated. Every few weeks or so I have what I believe to be a hemmoroid attack. Painful bowel movement, blood on tissue, and the like. Well today. I was brought to tears by the painful bowel movement. It's only getting worse each time I have an attack. I haven't had much luck with topical creams and decided to talk to the pharmacist. Who politely as she could suggested I should see a doctor. The logical side of me knows she's right but the doctor I went to was such an asshole that I don't have a fondness for visiting any doctors. She also suggested that I might have an intolerance to something and that I should look into it...well lady I said my doctor says I don't and that it's impossible to have a false negative. She gave me a look.
I know I need to put my big girl panties on and go. It's not getting better. It's painful. It makes me cry. And dammit it's not normal and topical freaking creams aren't working. I'm going to call my gyno in the morning to see if she has someone she can recommend because I am not going back to the asshole to talk about my painful asshole.
I have no idea if this is celiac but I figured if anyone would understand the frustration of knowing somethings wrong and not being able to figure it out...y'all would.
a little update.
still taking the stupid flagyl...last day is monday yay!!
noticed an increase in stool frequency...about 8x a day. as of Monday evening, no gluten and very little lactose (just in my yogurt drink so I have some good bacteria). still going multiple times a day but I figure my system might a) need time to adjust and flush the gluten out if that is in fact the problem I'm getting assaulted with 1500mg of flagyl a day and my body doesn't like it. I am seeing increasing amounts of food particles. I have been able to identify cranberries, strawberries, corn (nature's tracer), noodles, and bizarrely enough quinoa. And yes I am chewing my food. My mom was a bit concerned about it and told me to call the doctor...and let him think about it...he moved my follow up appt to Monday so I thought I would wait til then. But then maybe if I give him more info in advance he'll be able to ponder the situation longer.
Nurse just called back. She said to keep an eye on things through the weekend and they will see me Monday. The doctor wants to put me on pancreatic supplements. I asked her what they were and why? She said the doctor would tell me Monday. Weeee everyone likes secrets and surprises...but not me. Gr.
when they throw medication at a problem that you have tested negative for
and my mom's story (although she doesn't have celiac, she has another autoimmune disease)
her doctor told her she was overweight...my mom kindly told him "you try being on high doses of prednisone for 6 months and see if you lose weight" the nurses got a chuckle out of it and said that they had gained weight after only being on predisone for a couple of days. jerk.
I called my mom and told her what you said...and she said TRY THE DAMN DIET...it's not going to hurt you...if it barks like a dog, sounds like a dog...it's a dog
I gave her many rebuttals about how I wanted an absolute postive which she quickly shut down by saying I've never tested positive for Wegener's (autoimmune disease) in 15 years but all my symptoms match up and I respond to treatment.
I'm shaking and getting teary right now. I just wanted to say thank you for taking the time to look at my results and for continuing to urge me to try the diet. You have no idea how much it's appreciated.
unfortunately I don't have a scanner and I left my camera at home. boo. it appears as though the doc is right I am completely negative for celiac. hrm.
These are my blood tests:
e. histolytic ab transferrin (amoebas) Result Negative 254 Reference Negative 192-382 mg/dl
celiac ab panel t. transgl IGA Result 3
interpretive criteria <20 units antibody not detected, > or =20 units antibody detected
gliadin IGG Result 3
gliadin AB IGA Result 3
interpretive criteria <20 units antibody not detected, > or =20 units antibody detected
reticulin IGA NEGATIVE
reticulin IGG NEGATIVE
IMMUNOGLOB A 149.0 range 60-400mg/dl
ENDOMYSIAL IGA <1:5
reference range : <1:5
interpretive criteria: <1:5 antibody not detected, > or =1:5 antibody detected
vitamin d total result 46.7 reference 25-80ng/mL
optimal level 25-80 ng/mL
as for the metabolic cmp, tsh, iron and tbic, vitamin b12, folate serum, c- reactive these were the only ones that were flagged the others are well with in range
CO2 result 20 LOW reference 22-31mEq/l
Calcium result 8.4 LOW reference 8.5-10.4mg/dL
Total protein result 6.3 LOW reference 6.5-8.3 mg/dL
Albumin result 3.4 LOW reference 3.5-5.0g/dL
C-reactive protein result 11.1 HIGH reference <10.0mg/L
HCT result 48.4 HIGH reference 38.4-47.7%
MPV result 10.0 HIGH reference 6.3-9.9 um3
%reticulocyte result 0.76 LOW reference 0.98-2.67%
absolute retic 39 LOW reference 44-118 K/mm3
HIV type 1&2 Negative
Stool tests ordered and results:
fat stain, obfe automatad, o and p, stool, cdiff, toxin a/b
feces wbc result none seen
feces rbc result none seen
o&p direct result none seen
o&p conc result none seen
o&p trichrome result none seen
cdiff toxin a/b negative
fat stain feces
fatty acids result not increased
neutral fat result not increased
occult bld feces result negative
red. sub. feces negative
pH, feces 7.5
shiga toxins result negative for shiga toxins 1 and 2
no shigella, salmonella, e coli 0157, camplyobacter, plesiomonas, or aeromonas isolated
Gastritis was found in the antrum.
Microscopic description: Sections A show small bowel mucosa demonstrating intact normal vilious architecture with a normal crypt/vilious ratio. No significant increase in inflammatory cells is noted. THere is no evidence of intraepithelial lympocytosis, ranulomas, parastic organisms, dysplasia, or malignancy
Sections B show fragments of antral/oxynitc-type mucosa demonstrating marked reactive foveolar/pit hyperplasia and some smooth muscle extension with the lamina propria. There are mild chronic inflammatory infilitrates with no neutrophilic inflammatory activity. There is no evidence of H. pylori organisms, glandular atrophy, intestinal metaplasia, dysplasia, or malignancy
An immunohistochemical stain performed for H. pylori organisms is negative.
Sorry its so long. Maybe someone has some ideas...
I called this morning and am picking my labs and stuff tomorrow.
I just wanted to say thank you for all of these responses. Yesterday was a pretty awful day. After the doctor's appointment all I wanted to do was cry...and I did a lot. Not because I was sad but just frustrated and pissy. I began to question whether or not any of this was real. Did I make myself sick like one of the characters on House? Maybe 4-5 bm's a day was normal and this was just something I have to live with?
My bf said it's not normal to go 4-5 times a day, "I go one time, usually around 9:45, 45 minutes after I had my coffee. The brain is powerful but no offense your brain can't make you go to the bathroom 4-5 times a day. There is something wrong and we're going to find out what it is."
While this is probably oversharing and all of that it was incredibly sweet to hear and made me feel less like a crazy.
The plan of action right now: take the stupid flagyl so I can prove the doctor wrong. Keep a food diary for the next 4 weeks. At which point maybe everything will become glaringly clear to all or I'll get referred to the infectious disease doc....
got my results...well sort of. the doctor told me and i wrote:
no celiac sprue
no infection with bacteria or parasites
no h pylori
thyroid is good
nutrition parameters are good
but because I was in the Philippines for 2 years he says parasites are still a possibility even though I've had 5 negative stool results.
so I have 14 days of flagyl to look forward to. and then in 4 weeks a follow up visit to see if I still have cramps and if I'm still pooping 4-5 times a day. at which point he will send me to an infectious disease doctor because it is not Celiac because my blood test was fine and my endoscopy was fine. "What about the 21% of people who get false negatives?" "That's not true, these tests are very accurate now"
I've seen this mentioned in a few posts and not clear on what people mean.
I mentioned it to my mom and she was like ohhh yeah you've definitely got that symptom. I don't know if thats her just being a tad bit cheeky or what...I mean I definitely get frustrated very easily over things that I shouldn't. My exbf once said "it's doesn't take much to piss you off and it doesn't take much to make you happy."