Waiting

[missladyj]

where to begin?

why the beginning of course?!

My stomach issues started...or noticeably started...when I was in the Philippines serving in the Peace Corps. In August 2007 I was having severe stomach cramps, loose bowel movements, and felt blah...results: appendicitis. In September of 2007 I was diagnosed with amoebas...fun! It took two rounds of meds to get kill those tricky pests. In January of 2009 I started having very frequent bowel movements...usually within 15-30 minutes after eating. And if I didn't go right away...well oops. During this time they weren't watery just loose. So I was sent to have a colonoscopy. Nothing stood out to the doc so he suggested that I had tropical sprue (originally I thought he made this up...turns out its REAL!) and prescribed antibiotics. Problems seemed to mostly go away. I had loose stool for two years so any idea of normal was completely shot. In August I show up in America after finish my service the loose stool seems to come and go...not nearly what it was in the Philippines. In March of this year I start having occasional stomach cramps and painful gas (at night) and what seems like every other week I have frequent bowel movements. The next week would be completely normal. Well mid-May things got more intense. The stomach cramps were more frequent and there was blood in my stool. Convinced that I had parasites again I went to Urgent Care. The blood was actually coming from a hemmoroid. I had noticed on the bad weeks that a somewhat painful bump would appear but it always went away so I didn't worry too much about it. Very embarrassing. Urgent care did stool samples and referred me to a GI doc. Stool samples were negative. The Urgent Care doc suspected IBS so I followed up with the GI doc.

He took my history and was suprised that I had it written down and knew months and years. The tropical sprue stumped him (not too many tropical bugs in Colorado!). He mashed on my stomach a few times asked about my family heritage...and then went to look up tropical sprue. He came back and said that of course in the Philippines they are going to look for things that are common there, tropical sprue being one of them. And since they are not of Northern European heritage it's highly unlikely that they will have Celiac disease and therefore won't look for it. So he wondered if maybe they missed it. He had me do a million blood tests...still waiting on results from some of them. He repeated the stool exams. Still negative for parasites. And I had an endoscopy on Friday...he took 9 biopsies from various locales. The only thing of note was I had mild gastritis. No ulcers, no cancers, no tumors. He's looking into H. pylori as a second guess.

My follow up appointment is next week. I know these things take time but argh I'd really like to stop pooping so frequently and get these dang hemmoroids cleared up.

I guess my coming here is to kind of vent and maybe see what the folks here had to say...you could pretend to be House and diagnose me!

[ravenwoodglass]

You have had the tests so go ahead and start the diet. Your body may give you the answer before you get the results back. Celiac is a disease that usually has a trigger and your illness overseas could have been the trigger. You are in a great place to learn what you need to learn to be gluten free. Start out by eating whole unprocessed foods and it is usually helpful to drop dairy in the beginning. Testing does have a high rate of false negatives so no matter what the test results are a dietary trial is in order, you might as well start now.

[missladyj]

You have had the tests so go ahead and start the diet. Your body may give you the answer before you get the results back. Celiac is a disease that usually has a trigger and your illness overseas could have been the trigger. You are in a great place to learn what you need to learn to be gluten free. Start out by eating whole unprocessed foods and it is usually helpful to drop dairy in the beginning. Testing does have a high rate of false negatives so no matter what the test results are a dietary trial is in order, you might as well start now.

thanks. I'm having a rough week as far as stomach problems go. I am so tired of pooping and its starting to get really painful. I talked to my mom and bf and they both suggested like you to go ahead and start eliminating gluten. This may be ridiculous and unnecessary but if this is a gluten allergy I really want a positive result, I want that confirmation. And I'm learning I may not get it which is frustrating. Overall I just want to go sit in a cool bath and soak my butt cause it hurts. I feel like I'm being such a whiny baby.

[ravenwoodglass]

thanks. I'm having a rough week as far as stomach problems go. I am so tired of pooping and its starting to get really painful. I talked to my mom and bf and they both suggested like you to go ahead and start eliminating gluten. This may be ridiculous and unnecessary but if this is a gluten allergy I really want a positive result, I want that confirmation. And I'm learning I may not get it which is frustrating. Overall I just want to go sit in a cool bath and soak my butt cause it hurts. I feel like I'm being such a whiny baby.

Your body will give you the answer. I know how frustrated you are, been there and stayed for years because of false negatives. Hopefully the diet will help, if only someone, or some doctor along the way had told me to try the diet despite my negative blood work my life and my childrens would have been so different. By the way celiac is not an allergy. An allergy is a histamine reaction. Celiac is an autoimmune disease or intolerance. I do hope you get some relief soon.

[missladyj]

Your body will give you the answer. I know how frustrated you are, been there and stayed for years because of false negatives. Hopefully the diet will help, if only someone, or some doctor along the way had told me to try the diet despite my negative blood work my life and my childrens would have been so different. By the way celiac is not an allergy. An allergy is a histamine reaction. Celiac is an autoimmune disease or intolerance. I do hope you get some relief soon.

Thank you for your advice. This board is a wealth of information! You folks are geniuses! I wasn't aware that it is an autoimmune disease. My mom has an autoimmune disease, Wegener's Granulomatosis. It mainly affects the respiratory and renal systems. Respiratory for her. At this point they don't think its genetic. It took her decades to get diagnosed so she's very sympathetic about my situation.

The doc told me to take Prilosec in the morning, 30 minutes before I eat or drink anything to reduce the acid in my stomach...I've never had heartburn or anything of the sort so I was a bit confused. Supposedly this will help with my frequent bowel movements. I'm a bit flummoxed by this but I don't have an MD so what do I know. Bloodwork is in but the nurse can't give it to me.

[ravenwoodglass]

Thank you for your advice. This board is a wealth of information! You folks are geniuses! I wasn't aware that it is an autoimmune disease. My mom has an autoimmune disease, Wegener's Granulomatosis. It mainly affects the respiratory and renal systems. Respiratory for her. At this point they don't think its genetic. It took her decades to get diagnosed so she's very sympathetic about my situation.

The doc told me to take Prilosec in the morning, 30 minutes before I eat or drink anything to reduce the acid in my stomach...I've never had heartburn or anything of the sort so I was a bit confused. Supposedly this will help with my frequent bowel movements. I'm a bit flummoxed by this but I don't have an MD so what do I know. Bloodwork is in but the nurse can't give it to me.

If you are in the US you have a legal right to copies of your blood work. Demand them.

[missladyj]

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"

[ravenwoodglass]

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 would try the diet anyway. You have nothing to lose. If it doesn't help then it doesn't help but it won't interfere with testing for anything other than celiac. I would also get hard copies of the test results and post them here. We have some really knowledgeable folks here and not all doctors are well versed in the changes that are seen in biopsies before the villi are totally destroyed.

[missladyj]

I would try the diet anyway. You have nothing to lose. If it doesn't help then it doesn't help but it won't interfere with testing for anything other than celiac. I would also get hard copies of the test results and post them here. We have some really knowledgeable folks here and not all doctors are well versed in the changes that are seen in biopsies before the villi are totally destroyed.

I live in Colorado...will they give me the results? He wouldn't even let me look at them on the computer.

[Jestgar]

I live in Colorado...will they give me the results? He wouldn't even let me look at them on the computer.

What?!?!? I'm pretty sure you have the right to look at your own medical records.

[Jestgar]

More than you wanted to know.

Open Original Shared Link

[sa1937]

I live in Colorado...will they give me the results? He wouldn't even let me look at them on the computer.

My daughter lives in Denver and always asks for and gets a copy of her lab test results. You are entitled to them.

Here in Pennsylvania, I have a copy of the results of a lot of lab tests, my full celiac panel blood work, a copy of the pathology report on my EGD and just last week picked up a copy of the results on my abdominal CT scan. I asked for them and the doctor's offices just print them out for me, no questions asked.

[ravenwoodglass]

I live in Colorado...will they give me the results? He wouldn't even let me look at them on the computer.

I repeat you have a legal right to those. What is your doctor trying to hide? Maybe a low positive on the bloodwork and preceliac changes or notes stating that he thinks you are 'making everything up'. Tell them you know you have a legal right to them. Perhaps copy the pertinent pages from the link you were given. I would get my complete record from this doctor and perhaps look for a new one.

[missladyj]

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....

[ravenwoodglass]

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....

It sounds like you have a good BF there. Food diaries can be helpful but celiac can be tricky. Not all of us will get sick right away after eating gluten. For some the reaction can be delayed. You should consider doing a trial of the gluten-free diet. That is one of the best diagnostic tools we have.

[missladyj]

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

stool culture:

shiga toxins result negative for shiga toxins 1 and 2

no shigella, salmonella, e coli 0157, camplyobacter, plesiomonas, or aeromonas isolated

endoscopy results:

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...

[MommyL]

It sounds like you have a good BF there. Food diaries can be helpful but celiac can be tricky. Not all of us will get sick right away after eating gluten. For some the reaction can be delayed. You should consider doing a trial of the gluten-free diet. That is one of the best diagnostic tools we have.

How do you know before I gluten-free diet is working?

[ravenwoodglass]

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

stool culture:

shiga toxins result negative for shiga toxins 1 and 2

no shigella, salmonella, e coli 0157, camplyobacter, plesiomonas, or aeromonas isolated

endoscopy results:

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 would strongly suggest that you give the diet a good strict try. The results I bolded are common with folks with celiac. It may not be but you have nothing to lose by trying the diet.

[missladyj]

I would strongly suggest that you give the diet a good strict try. The results I bolded are common with folks with celiac. It may not be but you have nothing to lose by trying the diet.

when I googled them that's exactly what I thought and found but I wasn't sure because how could the doctor have missed that?

I mean it plainly says in 3 locations blood, stool, and biopsy that I am negative for parasites but he still wants me to take flagyl?!

If I try the diet for a period of time and the results improve...would it be worth it to later get retested?

[ravenwoodglass]

How do you know before I gluten-free diet is working?

You will know because your body will tell you. For some of us things like irritability will show up for a week or so when we first go gluten free. Others see a change for the better in things like headaches, aches and pain, energy levels and bowel habits fairly quickly. I for example have never had a migraine since I went gluten free and my IBS resolved very quickly. Some heal a bit faster than others but if the diet works you should see some changes for the better within a relatively short time. Do go with whole unprocessed foods and stay away from restaurants at first. It can be hard to get the hang of things so you may have some ups and downs when you first start. If you take any meds, OTC or script check them with your pharmacist or the maker to be sure they are gluten free. If you take supplements beware of wheat and barley grass, they really are not safe for us even though the label may say gluten free on it.

[missladyj]

I would strongly suggest that you give the diet a good strict try. The results I bolded are common with folks with celiac. It may not be but you have nothing to lose by trying the diet.

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.

[ravenwoodglass]

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.

I really hope it helps you. I do think your in the right place. I hope you heal quickly. I forgot to mention you should limit dairy for a bit also. If you are one of us it can be hard to digest until we heal. My doctors wanted an absolute positive on the tests too. That thinking almost killed me as is pretty clear in my signature.

[Marz]

...and what seems like every other week I have frequent bowel movements. The next week would be completely normal.

This is exactly me I had some bad episodes of stomach bugs/food poisoning end of last year, and ever since then I haven't been "normal". It's so frustrating going for a few days feeling perfect, and then having episodes for several days again.

Currently waiting for scopes to be done, but I'm fairly sure my GI is going to diagnose IBS - aka "I don't know what's wrong with you, but here's some fiber and pain medication. Deal with it...".

I'm still not 100% sure if it is gluten-related, but I'll try the diet after the scopes are done and see.

What else you can try :

1) An elimination diet, where you only eat seriously bland food like rice and lamb for a week. If you feel better after a week (Might have to be a few weeks in your case, if you feel fine weeks at a time), you start introducing certain food groups one at a time, noting any reactions. If there is a reaction, you remove that group again, wait a week and see if symptoms go away again. Long and laborious process, but that will at least spot what you are sensitive to. Recommend you do this under a dietitian's guidance.

2) A second opinion... looks like GI specialists range from amazingly ignorant to brilliant. Sometimes even a sharp GP will be able to help.

3) Keep a food diary - using this I managed to figure out that for me, chicken causes extreme, explosive cramps and running tummy between 1.5 and 2 days afterwards. I would never have made that connection if I didn't see it noted in my diary every time I ate chicken. After 2 days you've forgotten what you had even eaten. So it could be something like that - you're eating something occasionally that's causing issues for several days after you've eaten it.

Really hope you find what's wrong, and please let us know if you do figure it out, would love to get more ideas as to what's wrong with me! Don't give up hope!

[Marz]

Give it a try, it can't hurt you! Taking control of your situation might make you feel better as well.

I also want a positive result It somehow would make it so much easier following a strict diet knowing for sure...

[missladyj]

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.

Thoughts?