Need Some Advice/suggestions!

[CanadianGal]

hi! I'm new to the board and I wanted to get some opinions.

I started to get sick last October and when I went to the emergency room they did tests and said I had gull stones and told me to change my diet and I'd be fine. Well I changed my diet and I continued to get very sick at which point my doctor but me on an emergency list with a surgeon to have my gull bladder removed. After my intial appointment with him he didn't feel the cause for my pain was due to the stones they found. The symptoms just weren't matching up. So he referred me to a gastronologist. While waiting to see the specialist I had several trips to the emergency room. I was so sick and it didn't seem like anyone could figure out what was wrong and would run some blood work and xrays and send me home with pain killers and one doctor with dicetel for IBS, until I got my appointment to see the gastronologist. Finally I got in to see him and he has me scheduled for a small bowel xray next monday and a colonscopy in alittle over 2 weeks. He also called me last friday and wanted me to come by his office and pickup paperwork to have some blood work done that evening at the blood clinic. On the form it showed he was testing me for Celiac Disease. I'm very thankful that my appointments are coming up soon, but I'm so frustrated and mentally and physcially exhausted from being sick for like 10mths and my symptoms are getting worse and more frequent. I wanted to describe my symptoms to see if any of you could relate to this or have any suggestions on what you think may be wrong. It comes and goes. Sometimes I can be feeling pretty good for a couple weeks and then all of a sudden I'm very sick all over again. I get cramps, bloating, nausea and abdominal pain in my lower stomach and alot of gas and also diaherra. Usually when I have these attacks I get chills. My body is freezing but that may just be a reaction to the pain I'm feeling. It feels like my stomach is tight or nervous feeling. I sometimes will have pains that come in waves and that's when I get the worse diaherra. My stomach will start to feel tight and reach this peak of tighness, lower abdominal pain, and nausea from the pain. I can literally hear my stomach gurgling sometimes. They can last anywheres from an hour to several hours. Nothing seems to take the pain and discomfort away. I usually wake up with the pain in the middle of the night or have it first thing in the morning. I experience discomfort daily when I eat but sometimes it is just some gas and bloating but usually it isn't as bad as the attacks I experience at night and first thing in the morning. I've missed alot of work over this lately and last week 4 out of the 7 nights I was up with this pain and discomfort. When I went for the bloodwork on friday and saw what he was testing me for I researched it and decided to try a non-gluten diet for the next week or so and see if that helped me any. It may just be a coincidence but ever since I started on friday evening I've felt pretty good. Not perfect but alot better and I've actually slept through the night. I'm just looking for suggestions and seeing if these symptoms would match up with someone with celiac disease. Thanks in advance for your responses. Oh and I also should mention I've lost about 40 plus pounds since I first started getting sick.

[mamatide]

hi! I'm new to the board and I wanted to get some opinions.

Finally I got in to see him and he has me scheduled for a small bowel xray next monday and a colonscopy in alittle over 2 weeks. He also called me last friday and wanted me to come by his office and pickup paperwork to have some blood work done that evening at the blood clinic. On the form it showed he was testing me for Celiac Disease. I'm very thankful that my appointments are coming up soon,

...

When I went for the bloodwork on friday and saw what he was testing me for I researched it and decided to try a non-glutine diet for the next week or so and see if that helped me any. It may just be a coincidence but ever since I started on friday evening I've felt pretty good. Not perfect but alot better and I've actually slept through the night. I'm just looking for suggestions and seeing if these symptoms would match up with someone with celiac disease. Thanks in advance for your responses.

Hi and welcome

I'm also a canadian gal so your name made me read your post. I'm by no means a wise source of information on Celiac disease, but one thing I do know is that if you are going to be having a small bowel biopsy you should REMAIN on a gluten diet. Don't stop eating it until after you've had the small bowel examination. Now a few days or a week probably wouldn't skew the results but if it were me I'd want to be sure...

So stay on the gluten for now until you get your diagnosis. I know it's hard - I'm in that wait mode as well, waiting to be tested but I'm fairly certain I'm also Celiac (my DD is).

I'm sure the other kind folks on this site will be more helpful... go and eat a bun or something - perhaps someone here can offer some suggestions for dealing with the discomfort until you can get your test done?

mamatide

[CanadianGal]

Hi and welcome

I'm also a canadian gal so your name made me read your post. I'm by no means a wise source of information on Celiac disease, but one thing I do know is that if you are going to be having a small bowel biopsy you should REMAIN on a gluten diet. Don't stop eating it until after you've had the small bowel examination. Now a few days or a week probably wouldn't skew the results but if it were me I'd want to be sure...

So stay on the gluten for now until you get your diagnosis. I know it's hard - I'm in that wait mode as well, waiting to be tested but I'm fairly certain I'm also Celiac (my DD is).

I'm sure the other kind folks on this site will be more helpful... go and eat a bun or something - perhaps someone here can offer some suggestions for dealing with the discomfort until you can get your test done?

mamatide

Hi.

It's nice to see a fellow Canadian on here :-) I know it's better I stay on a gluten diet in the meantime but I just can't. I get horribly sick and I'm desperate to try anything that may ease the pain and discomfort. I can't go through another week like I did last week where I was up almost all night every night and I had to be to work early the next day. I can't take the horrible pain and lack of sleep.

[ravenwoodglass]

I know it's better I stay on a gluten diet in the meantime but I just can't. I get horribly sick and I'm desperate to try anything that may ease the pain and discomfort. I can't go through another week like I did last week where I was up almost all night every night and I had to be to work early the next day. I can't take the horrible pain and lack of sleep.

I lived with that sort of thing for 15 years before my diagnosis. I went gluten-free when my allergist did the elimination diet and got the response you did. When we challenged wheat I became very ill again and was referred to a GI. I was so sick from the challenge that he decided to diagnose me without the biopsy, it was just too obvious. My DD had a positive biopsy but my DS also was diagnosed without one. They had positive bloodwork but I never showed up positive on the blood tests. I am someone who feels that if your dietary response is pronounced you should simply stay on the diet.

[Canadian Karen]

Hi Canadiangal,

You just described my life to a tee! From what you have described, I have lived several years of my life like that.

My diarrhea is also very nocturnal, has me up most nights. It usually will wake me up around 2 a.m., be very, very active until around 5 or 6 a.m., with alot of abdominal pain in between the explosive diarrhea. I would suggest when you go for the colonoscopy, ask him to take samples to also test for collagenous colitis. It can only be seen through the microscope by a pathologist.

My stomach regularly sounds like a cross between a thunderstorm and a really bad kitchen drain! Kind of like a glug, glug sound as things move their way down. I know exactly the sounds you are talking about, believe me! See, I have had nothing but watery diarrhea for over a decade now, so I have a good understanding of the sensations you are trying to describe.

Next time I want you to try something. When you are getting the abdominal pains, gassy feeling, I want you to lay down on the floor on your tummy for 3 minutes, move onto your right side with your arms raised above your head for three minutes, move onto your back for three minutes (with your hips slightly raised), then move onto your right side with your arms raised above your head, and stay that way until you feel get the sensation that the "drain" has opened up and all of a sudden a whole bunch of gas and water feels like it is going through. Trust me, you will very shortly afterwards have to run to the bathroom, but you feel much better once you get it out.

Also, when I have the cramping, I find that if I sit cross-legged on my bed hugging onto my heating pad, and slowly rock forward and backward while humming to myself with my eyes closed, I kind of put myself in a trance to be able to control the pain...... Sounds corny, but it really works!

By the way, where in Canada are you? I am about 1 hour outside Toronto......

Welcome to the board and you will find a great bunch of people here who are amazingly supportive. My very best friends in the world (literally) are friends that I made on here!

Hugs and welcome,

Karen

[lorka150]

i also wanted to welcome you, as a fellow canadian. i cannot offer much more than the others say, other than that if you do want an official diagnosis, you'll want to stay on gluten.

[CanadianGal]

Canadian Karen: Thanks so much for your support and advice. I will definitly try those things you explained next time I have one of my attacks come on. Actually I could've used that last night. I was sick again but it wasn't nearly as severe as my attacks usually are and didn't last as long. I slept with the heating pad all night and in a fetal position and that seemed to help. I don't know if it's just a coincidence or whether the glutine free diet I've been trying for a couple days is helping decrease these attacks and the pain/discomfort that happens when I do have them. It's just nice to talk to someone that can relate. :-) Since you mentioned Collagenous Colitis and Lymphocytic Colitis I researched it a bit. The diaherra that use to accompany the cramps, gas, and abdominal pains subsided after the doctor had but me on some trial dicetel (meds for ibs with diaherra)but the meds did nothing for the pain and discomfort I felt and the frequency of the attacks. I've recently gone off dicetel since it isn't helping the probelm so the diaherra may return. I also wanted to mention sometimes I find the attacks to happen more and be worse just before or during my period.

Oh and by the way I am located in New Brunswick! :-)

[Canadian Karen]

Mine also gets worse just before and during my period. I have always thought that it has something to do with the uterus getting swollen and pushing up against the bowels to irritate them or generally just making less room in there.

Try to find out what your safe food is. When my bowels are really bad, the only food I can eat without it making it hurt worse is potatoes.

Also, keep in mind that the longer you have had your symptoms (i.e. the longer you have had undiagnosed celiac) usually is a good indicator as to how long it takes to heal. Some people notice a change almost immediately after going gluten free, other it could take 6 months to a year - the key is patience........

Hope the postural positioning trick works for you the next time you have pains......

Have a wonderful day!

Karen

[Cornhusker]

Since your colonoscopy is coming up very soon, I'd avoid going on the diet until all the testing is done. Though it certainly sounds like celiac, going on the diet could potentially screw-up the tests. I'd also make sure that when they have you out for the colonscopy that they also do an endoscopy (through the mouth to check out the esophagus, stomach, and upper portion of the small intestines) with biopsy to verify intestinal damage due to celiac.

Good luck.

[CanadianGal]

Since your colonoscopy is coming up very soon, I'd avoid going on the diet until all the testing is done. Though it certainly sounds like celiac, going on the diet could potentially screw-up the tests. I'd also make sure that when they have you out for the colonscopy that they also do an endoscopy (through the mouth to check out the esophagus, stomach, and upper portion of the small intestines) with biopsy to verify intestinal damage due to celiac.

Good luck.

Thanks for your advice. My fear about getting back on the gluten is being very sick for the next couple weeks till my colonoscopy. I've already missed to much work and had many sleepless nights. I'm desperate for some relief. I was still on the gluten when I had my bloodwork done so those results should still be true. I know I'm stubborn LOL I just don't think I can handle being sick any more and I'm willing to try a gluten free diet if that makes me feel better.

[Cornhusker]

Thanks for your advice. My fear about getting back on the gluten is being very sick for the next couple weeks till my colonoscopy. I've already missed to much work and had many sleepless nights. I'm desperate for some relief. I was still on the gluten when I had my bloodwork done so those results should still be true. I know I'm stubborn LOL I just don't think I can handle being sick any more and I'm willing to try a gluten free diet if that makes me feel better.

Obviously it's your call. If I had to guess, I'd say that if your damage was severe (and it sounds like it might be) two weeks won't really make a difference.

I will say that, IMO, it's still important to go through the testing (and make sure they do a endoscopy) not so much to diagnose celiac but to eliminate other issues. A gluten-free diet won't do much if a malignacy has already developed or if it's something else going on.