What Is Wrong With My Body?

[danaf617]

Ugh. I don't even know if this is the right site to post on but after reading around a bit it seems that many members have, at one time, not known what was wrong with them but knew something wasn't right.

I am 27 years old and have been healthy almost all of my life, aside from a tendency to get frequent UTIs.

In mid-December I got sick. It was sudden, like a virus or food poisoning. I was driving and got severe and sudden stomach pains. I pulled over to use a restroom and ended up having diarrhea for the rest of the night. I did a bland diet for a day or two and then starting feeling a bit better. 5 or 6 days later (after not having a BM at all) I got mild diarrhea again. Saw my primary MD the next week and he said I had infectious colitis. Stay away from dairy & fatty foods and should be back to normal in a couple of weeks.

Fast forward to now. Almost 6 months later and I am still sick. And miserable. I have stomach pains from the time I open my eyes in the morning until the time I go to bed at night. In the morning, it's more rolling, bubbly gas pains. Then it just starts to feel crampy and bad. I have frequent constant pain in the upper middle part of my abdomen. And I almost always feel a pressure in my bottom, like I could have to go any minute. I haven't noticed any pattern of better or worse with foods. I go 3 or 4 days without having a BM and then a day where I go several times and each time is less solid and less "normal." Then another 3 or 4 days where I'm unable to go.

Around the 3 month mark, I decided enough was enough and made an appt with a Gastro. He's done blood work and a colonoscopy. I brought up celiac disease after reading about it online and how it can come on suddenly after an illness. On the lab sheet he ordered a Celiac Disease Panel. He said he was sure I had post-infectious IBS.

I don't know what the actual results were but I got a phone call from a nurse saying "you don't have celiac disease." I had 2 hyperplastic polyps removed during the colonoscopy and he said the rest of the colon looked good, with no signs of Chrohn's or colitis.

So, here I sit with a dx of post-infectious IBS and a rx for Librax. I was taking it 2x/day after the colonoscopy and started feeling better than I was. Then I got a sinus infection and took antibiotics and I started feeling worse than ever. Now I'm taking the Librax 4x/day and still not feeling great. I've also been taking a probiotic daily since just after this started.

I know that abx can wreak havoc on your gut but I've had to have them many times in my life and never experienced any GI side effects.

I was considering ordering the Enterolab stool test just because I don't know what else to do. The doctor's plan is to see him after 4 weeks of the increased Librax and start weaning back down. He seems content to just let me have the IBS dx.

What can be making me feel like this for so long? Why was I fine one day and the next I wasn't?

Any advice you can give me is much appreciated. I just don't know what else to try or what else to ask for from my doctor. I'm just tired of feeling sick or uncomfortable or in pain and not wanting to do anything or leave my house.

[OptimisticMom42]

Ugh. I don't even know if this is the right site to post on but after reading around a bit it seems that many members have, at one time, not known what was wrong with them but knew something wasn't right.

I am 27 years old and have been healthy almost all of my life, aside from a tendency to get frequent UTIs.

In mid-December I got sick. It was sudden, like a virus or food poisoning. I was driving and got severe and sudden stomach pains. I pulled over to use a restroom and ended up having diarrhea for the rest of the night. I did a bland diet for a day or two and then starting feeling a bit better. 5 or 6 days later (after not having a BM at all) I got mild diarrhea again. Saw my primary MD the next week and he said I had infectious colitis. Stay away from dairy & fatty foods and should be back to normal in a couple of weeks.

Fast forward to now. Almost 6 months later and I am still sick. And miserable. I have stomach pains from the time I open my eyes in the morning until the time I go to bed at night. In the morning, it's more rolling, bubbly gas pains. Then it just starts to feel crampy and bad. I have frequent constant pain in the upper middle part of my abdomen. And I almost always feel a pressure in my bottom, like I could have to go any minute. I haven't noticed any pattern of better or worse with foods. I go 3 or 4 days without having a BM and then a day where I go several times and each time is less solid and less "normal." Then another 3 or 4 days where I'm unable to go.

Around the 3 month mark, I decided enough was enough and made an appt with a Gastro. He's done blood work and a colonoscopy. I brought up celiac disease after reading about it online and how it can come on suddenly after an illness. On the lab sheet he ordered a Celiac Disease Panel. He said he was sure I had post-infectious IBS.

I don't know what the actual results were but I got a phone call from a nurse saying "you don't have celiac disease." I had 2 hyperplastic polyps removed during the colonoscopy and he said the rest of the colon looked good, with no signs of Chrohn's or colitis.

So, here I sit with a dx of post-infectious IBS and a rx for Librax. I was taking it 2x/day after the colonoscopy and started feeling better than I was. Then I got a sinus infection and took antibiotics and I started feeling worse than ever. Now I'm taking the Librax 4x/day and still not feeling great. I've also been taking a probiotic daily since just after this started.

I know that abx can wreak havoc on your gut but I've had to have them many times in my life and never experienced any GI side effects.

I was considering ordering the Enterolab stool test just because I don't know what else to do. The doctor's plan is to see him after 4 weeks of the increased Librax and start weaning back down. He seems content to just let me have the IBS dx.

What can be making me feel like this for so long? Why was I fine one day and the next I wasn't?

Any advice you can give me is much appreciated. I just don't know what else to try or what else to ask for from my doctor. I'm just tired of feeling sick or uncomfortable or in pain and not wanting to do anything or leave my house.

[OptimisticMom42]

The blood test for celiacs is unreliable. Lots of people with celiacs receive a negative test result. Have you been to an immunologist to be tested for food allergies (not just mold, grasses, trees, pollen and pets)?

When I was tested, I was positive for two of the gluten grains, dairy, soy, everything in the celery family and sweet potatoes. I would never have figured it out on my own.

My symptoms were - a week of bloating and constipation followed by horrible cramps and explosive diarrhea and frequent sinus infections. Another family member was dx'd by her Ob-gyn after frequent UTI's.

Hope this helps, RA

[conniebky]

I don't know enough to answer your questions, I've been gluten free for only three weeks.

I got tired of the going to the doctor and being given abx for inner ear infections, and all kinds of pills for all kinds of symptoms.

I, like you, decided to go out and look for myself, so I started surfing the 'net for my symptoms.

The stomach aches and the pressure you feel, I know all about that. I also used to vomit a lot, but I never put the stomach thing together with the vertigo, the rash on my elbow, the dizziness, the tingling in my arms and legs, and I just kept looking until I found out about gluten allergy/intolerance and stopped eating it immediately. The change has been dramatic.

I also quit being "scared" to leave my house, quit getting panicked. In fact, now when I do eat something with gluten, I can tell because I get this terrible feeling in my stomach like pressure, start feeling panicked and I get dizzy. Also, my tummy is almost flat and it hasn't been for a long time.

My advise would be to just stop gluten immediately and see what happened. I mean, it can't hurt you to stop gluten - can it y'all? I haven't been to a doctor or had a test, but I'm better just from stopping. I figured what's the harm in trying gluten free - ?

[danaf617]

Thank you for your replies. I wondered about other food allergies and I think I will call in the morning and set up an appt with an allergist/immunologist. I guess going that route first and having it covered by insurance is better than grasping at straws and putting money out-of-pocket for the Enterolab test(s).

I am just so frustrated and so baffled that my body has changed so suddenly. I have never had digestive problems and now I've been feeling sick daily for almost 6 months. It's wearing me down.

[mushroom]

Unfortunately, most of the doctors out there in medical land are perfectly content to let the patient "live" with a diagnosis of IBS, if living is what you call it

Most of their patients do not believe that IBS is a medical diagnosis - if my bowel is irritable doc, WHY is it irritable? What is making it irritable? It didn't just decide one day, I am going to be irritable just for the heck of it I am going to drive the body mad and send her to tons of doctors who will all tell her that I am irritable

No, definitely, keep looking for a reason for your symptoms. The first thing you should do is get a copy of your blood results. If your results are "mildly" positive many doctors will tell you you are negative. That being said, many people with celiac disease (or the symptoms thereof) do not test positive on serology, but often show positive if an endoscopy is done. He really should have checked your upper GI while he was doing the colonoscopy, since there is where most of your symptomatology is. But even if he had and that were negative, it still could have been a false negative; or even, if in fact you did not have any GI damage, that does not mean that you are not gluten intolerant. Many celiacs do not express their symptoms through the GI tract. Some have neurological symptoms, some have dermatitis herpetiformis, some develop rheumatoid arthritis. A poor unlucky few might experience all this and more. It is because of all the "more" that you really should find out if gluten is your problem, because the "mores" include diabetes, thyroid problems (including cancer), colon cancer (you have already had polyps - not to scare you, but to make you aware that this can be one of the consequences of gluten intolerance).

After you have exhausted all medical avenues you really should try the gluten free diet and see how you respond. You may be amazed

[smitchell]

Unfortunately, most of the doctors out there in medical land are perfectly content to let the patient "live" with a diagnosis of IBS, if living is what you call it

Most of their patients do not believe that IBS is a medical diagnosis - if my bowel is irritable doc, WHY is it irritable? What is making it irritable? It didn't just decide one day, I am going to be irritable just for the heck of it I am going to drive the body mad and send her to tons of doctors who will all tell her that I am irritable

No, definitely, keep looking for a reason for your symptoms. The first thing you should do is get a copy of your blood results. If your results are "mildly" positive many doctors will tell you you are negative. That being said, many people with celiac disease (or the symptoms thereof) do not test positive on serology, but often show positive if an endoscopy is done. He really should have checked your upper GI while he was doing the colonoscopy, since there is where most of your symptomatology is. But even if he had and that were negative, it still could have been a false negative; or even, if in fact you did not have any GI damage, that does not mean that you are not gluten intolerant. Many celiacs do not express their symptoms through the GI tract. Some have neurological symptoms, some have dermatitis herpetiformis, some develop rheumatoid arthritis. A poor unlucky few might experience all this and more. It is because of all the "more" that you really should find out if gluten is your problem, because the "mores" include diabetes, thyroid problems (including cancer), colon cancer (you have already had polyps - not to scare you, but to make you aware that this can be one of the consequences of gluten intolerance).

After you have exhausted all medical avenues you really should try the gluten free diet and see how you respond. You may be amazed

I could have posted this! I have the same thing, except, my illness started 1.5 years ago. In addition, I have had terrible bouts of pain in the joints (to the point of being so sore to walk) had all the tests done including colonoscopy, endoscopy. I got a note in the mail that just said. Negative test results. I had one polyp removed and told to come back in 5 years. I have a history of colon cancer in my family and terrified of getting it. But, docs keep telling me I am fine with gluten. I am dairy free for 2 days and still having pains. I feel crazy every time I go to a dr. I also have hashimotos too, so I am so curious to see what posters say for you. I agree with last poster, it doesn't hurt to try it. I am tired of the medical field saying I am fine.

[danaf617]

Neroli, thank you for your reply. That is the first I ever heard of polyps being a sign of gluten intolerance.

In the recovery room after my colonoscopy, my Dr. came in to tell me what he saw and inform me of the polyps. All he said was "you're too young for polyps" like he was puzzled. I went home and researched colon polyps and was pretty scared, even if those were benign, that it increased my chances of more polyps and colon cancer. Everything I read said that greasy, high-fat foods contribute and so I gave up all fried foods that day. At my follow-up appointment I informed him of my dietary change and how having polyps scared me and his reply was, "but they were hyperplastic?" like it was no big deal and I shouldn't be concerned. Kinda bugged me.

I have a call in this morning to his nurse to get the numbers from my celiac panel. Hopefully I'll get a call back soon.

[danaf617]

Okay, I just got a (very unhelpful) call back from the nurse.

She said Labcorp did a "Celiac Panel" that included IGA, IGG and tissue transglutaminase. She said all it says is that the values for the panel are 0-3 and I am a 1. According to her, there are no values for each individual thing. I asked her to put a copy of the results in the mail to me.

Anybody heard of this before?

[Dino]

On my recent visit to figure out what was going on with me the doctor let me get one sentence out and said "Oh, you are IBS" and started to talk to me about anxiety and such. Finally decided to test me after I pushed on about my symptoms.

[danaf617]

I'm having a bad, bad day. The stomach pains have been TERRIBLE for 3 days in a row. No "D" but I am in serious discomfort from the top of my midsection to the bottom, back and front. It sucks.

My Enterolab test was shipped yesterday and should be here in a few days. I'm reading and researching gluten-free with every moment of spare time so I can be prepared to make the change right after I do the stool test.

And then this morning it hit me...

What if this isn't the problem? What if gluten-free doesn't fix me?

My life changed so suddenly and so drastically 6 months ago and nobody can give me a damn answer. I am so frustrated and depressed over feeling absolutely awful every single day. I don't know how some of you have done this for years! I'm miserable and just want to be better.

[Looking for answers]

I'm having a bad, bad day. The stomach pains have been TERRIBLE for 3 days in a row. No "D" but I am in serious discomfort from the top of my midsection to the bottom, back and front. It sucks.

My Enterolab test was shipped yesterday and should be here in a few days. I'm reading and researching gluten-free with every moment of spare time so I can be prepared to make the change right after I do the stool test.

And then this morning it hit me...

What if this isn't the problem? What if gluten-free doesn't fix me?

My life changed so suddenly and so drastically 6 months ago and nobody can give me a damn answer. I am so frustrated and depressed over feeling absolutely awful every single day. I don't know how some of you have done this for years! I'm miserable and just want to be better.

I'm so sorry. This is a great place to be (forum) because so many people can support you, so feel free to ask questions and vent as needed.

Have you been tested for parasites/bacteria? Have you taken antibiotics within the past 6 months? With the sudden onset, it may be something to consider. Either way, I'm certain a gluten-free/dairy free diet will help keep the inflammation low, which will help with the symptoms.

[Roda]

I noticed the doctor did not order the antigliadin IgA and IgG antibodies. They should have been done with the rest of them. You could also insist on an EGD with biopsy if you want to go this route. It may not show celiac (can get false negatives if damage is spotty or not enough samples were taken), but it can look for other things also. If you have the EGD you need to stay on a regular gluten filled diet until it is done and have them take at least 6 samples from different spots in the small bowel.

[danaf617]

Have you been tested for parasites/bacteria? Have you taken antibiotics within the past 6 months? With the sudden onset, it may be something to consider. Either way, I'm certain a gluten-free/dairy free diet will help keep the inflammation low, which will help with the symptoms.

I have taken antibiotics recently but it was after the problems started. Unfortuantely, I take antiobiotics 1-3 times a year because I get UTIs frequently. Been that way since puberty. I've had bladder/urethral surgery and that helped for a while but not since I've been an adult and having babies. All of the antibiotics I've taken in my life and I've never gotten so much as a loose stool. Never, ever had a GI side effect.

My tummy troubles started after having a virus (or bacteria from something I ate.) I'm wondering if that was my "trigger" like so many Celiacs have had.

I haven't been tested for bacteria or parasites. After bloodwork and a colonoscopy, my doc was confident that this was post-infectious IBS and just gave me meds.

And you're right, I was thinking about it last night and I will wait to try the gluten-free diet until I get the Enterolab results. It should only be 2-3 weeks longer and that would allow be to have the endoscopy done which I'm sure my doc will want to.