New, Frustrated - Pre-Diagnosis

[amy77]

Hello all, I just feel like venting. I'm not sure if I have Celiac disease or not, but it's what I'm currently awaiting the initial blood tests on. I am 33, almost 34, and have had loose stools and diarrhea 2-4X a day for three weeks now. My whole life I've been more prone to occasional bouts of constipation - so this is new and upsetting. I have been a vegetarian since I was 15 - just a background bit of info - I've had TMJ that lead to jaw surgery when I was 20 - and in the past I've had depression (my father has clinical depression) though I'm not depressed now (frustrated is more like it!).

I waited 1.5 weeks before I saw my doctor because I'm usually such a hypochondriac I wanted to just see if it would pass. So I see my family doctor and he puts me on Cipro and Pepto-Bismol. No improvement, and then on a weekend I call the office again, speak to a doctor who is covering his calls - and she was shocked he put me on antibiotics without doing a fecal test first. So I brought a sample to the hospital, knowing that since I've been on Cipro already for 4 days that it may affect the test. I just wanted to do something. I see my doctor again, and he says they only had some white blood cells in the stool. He changes my antibiotic to Metronidazole 500mg 3x day for 7 days. I have one pill left now. I saw him last Thursday and he mentioned Celiac - so he drew blood for that. I thought it would be a fast test but I spoke to the office manager this morning, and she said it may take as long as a week because sometimes they get sent to the Mayo Clinic. My thyroid and hormone panels were normal. So we're just waiting on the Celiac panel.

I'm just frustrated - I am sorry to complain but I know you're a compassionate group. At this point - I'm practically hoping for Celiac because of the things I can scare myself about by reading about symptoms on the internet - at least this is treatable with diet. I'm a vegetarian so I'm used to reading labels, and I've known people to go off gluten (not for celiac disease - just as a dietary change). I'm only 33 - I'm scared it's something worse. But I don't see any blood in my stool - it's just diarrhea, that looks like it has bits of undigested food in it. I seem to better during the day - I mean - my appetite is off a bit (and I used to be really food oriented - I love to cook - and now I have ZERO desire to cook). It seems to be worse in the morning - I've had times where I wake up at 5 or 5:30 with gassiness and then have to use the bathroom (geesh, this is gross). The only GOOD thing (silver lining?) is I'm off my coffee habit now - LOL - tea seems more appealing.

This is just annoying because my husband and I were about to start IVF (we have male factor infertility - I've had all my tests for infertility done and I'm all good). Now I'm just worried about this. I'm scared, and the waiting is hard. I mean, of all the things in the world - at least celiac disease can be handled with diet change - I just want to know already.

Anyways, the office manager lady (the dr's wife - very nice - much nicer than the receptionist), said I can pick up these cards so I can do some kind of fecal smear on them from three BM's - to double check for blood. No blood was found before, and I haven't seen any - I'm just nervous.

The doctor said last week that if the Celiac panel didn't show anything the next thing would be a sigmoidoscopy... I guess to check for scarier things.

Okay, sorry for all the details. I'm just freaking out a bit.

Thank you for listening.

[ArcticLotus]

It sounds like you're going through alot right now. I really hope it all works out for you, and soon. I understand the constant diarrhea and the fear and not knowing. I also experience severe migraines with a barrage of side symptoms.. I feel like I've been a hypochondriac for the last 3 years trying to solve it all. Now I've been gluten free a single month and am already feeling better.

Some people on this forum have had the fortune of finding amazing doctors that helped them discover their problems and guide them along the way, while others are disenchanted by the medical community. Personally, I had to take matters into my own hands because most of my doctors have been worthless.

Best of luck, and please keep us updated how your tests go.

[amy77]

Thank you, ArticLotus. I think that if there IS one good thing - this is making me not take my health for granted. I'm hopeful hearing stories of people who have gotten improvement with the diet change. Hopefully that's all that it will take for me, too. I think stress management will be important for me, too - I tend to hold a lot of anxiety in my stomach.

It sounds like you're going through alot right now. I really hope it all works out for you, and soon. I understand the constant diarrhea and the fear and not knowing. I also experience severe migraines with a barrage of side symptoms.. I feel like I've been a hypochondriac for the last 3 years trying to solve it all. Now I've been gluten free a single month and am already feeling better.

Some people on this forum have had the fortune of finding amazing doctors that helped them discover their problems and guide them along the way, while others are disenchanted by the medical community. Personally, I had to take matters into my own hands because most of my doctors have been worthless.

Best of luck, and please keep us updated how your tests go.

[amy77]

Hello, I just wanted to update my thread here. I got my blood tests back and they are all normal, and not indicative of Celiac. I have a copy of the results and the tests are kind of weird to see in print. They did Endomysial IGA (negative), Gliadin IGG AB (<10.0, Normal), Gliadin IGA AB (<10.0, Normal), and Reticulin ABS (Negative). He didn't mention anything about gluten intolerance - is this still possible for me?

My diarrhea has been gone for a week now. I had a major improvement just by finishing up that last dose of antibiotic. I'm thinking it made whatever was going on worse. I also went to acupuncture once - and will go weekly for a bit to see if that balances me more. My stools are harder and formed now - but darker than I used to have (not black, so I don't think there is blood in it - while I had D I did a three series test for occult blood which was negative). I wonder if I have IBS. I don't think my doctor will want to do more tests on me - it seems like everything is going back to normal now. I have my appetite back, I'm enjoying cooking again. I wonder if I should see a gastroenterologist anyways. I may be switching my primary care doctor, so perhaps if I do I'll go over all of this with a new doctor and see what they think.

[treehouse3518]

I am glad to find a forum where I can air my frustration. I have had loose stools and abdominal pain since the end of March. I have had irritable bowel in the past and had my gall bladder removed about 10 years ago. I saw my family doctor, ended up in the ER only to find out I had uterine fibroid issues. When the loose stools didn't go away - and I mean diarrhea - I went to the surgeon who removed my gall bladder. I tried four different medications between him and my family doctor. My daughter was moving away in June and I assume some of it was stress related. This week I went to my surgeon to get an order for a colonoscopy, and the physician's assistant decided to test my blood for Celiac. I went home and had two pieces of pizza and a piece of cake and decided to go gluten-free. When they called with my blood test results, I almost laughed myself off my chair at work. Apparently they tested in two parts, and one came back positive and the other negative. I don't know which was which. So, my colonoscopy has been called off and I'm going to see another doctor in order to have a small intestine biopsy performed. I have been four days gluten-free and have some seen some minor relief. I still have very loose stools several times a day, but not having the abdominal discomfort that I was. I love to cook and all the things I normally eat would include, bread, pasta, pizza dough ... and I have eaten whole wheat and grains "thinking I was doing the right thing for my health!" I am working through the shopping and eating, but am feeling very overwhelmed/depressed. I am getting up and going to work ... I know some of this probably has to do with maybe lack of nutrition. The other thing is I decided yesterday (Friday) that maybe I should get a comprehensive blood panel done to see where I am at. Of course, couldn't get done thru the walk-in at the hospital, surgeon closed for the weekend. Finally the family doc's office would order it and draw it themselves. As much as no one wants another test ... I would think it would be helpful where you are at ... and if eating gluten-free would make a difference. I can feel the relief lifting to some degree as I right this. Last night my fiance made a joke about "oh, I can't eat this, I can't eat that ... I need my own toaster ..." and I was hurt by his mocking, even though I know to some extent he was joking. At this moment, I don't feel this is a joking matter. Please tell me if I am alone ... I am sure I am not. Thank you so much ... already.

[Sam81]

I am glad to find a forum where I can air my frustration. I have had loose stools and abdominal pain since the end of March. I have had irritable bowel in the past and had my gall bladder removed about 10 years ago. I saw my family doctor, ended up in the ER only to find out I had uterine fibroid issues. When the loose stools didn't go away - and I mean diarrhea - I went to the surgeon who removed my gall bladder. I tried four different medications between him and my family doctor. My daughter was moving away in June and I assume some of it was stress related. This week I went to my surgeon to get an order for a colonoscopy, and the physician's assistant decided to test my blood for Celiac. I went home and had two pieces of pizza and a piece of cake and decided to go gluten-free. When they called with my blood test results, I almost laughed myself off my chair at work. Apparently they tested in two parts, and one came back positive and the other negative. I don't know which was which. So, my colonoscopy has been called off and I'm going to see another doctor in order to have a small intestine biopsy performed. I have been four days gluten-free and have some seen some minor relief. I still have very loose stools several times a day, but not having the abdominal discomfort that I was. I love to cook and all the things I normally eat would include, bread, pasta, pizza dough ... and I have eaten whole wheat and grains "thinking I was doing the right thing for my health!" I am working through the shopping and eating, but am feeling very overwhelmed/depressed. I am getting up and going to work ... I know some of this probably has to do with maybe lack of nutrition. The other thing is I decided yesterday (Friday) that maybe I should get a comprehensive blood panel done to see where I am at. Of course, couldn't get done thru the walk-in at the hospital, surgeon closed for the weekend. Finally the family doc's office would order it and draw it themselves. As much as no one wants another test ... I would think it would be helpful where you are at ... and if eating gluten-free would make a difference. I can feel the relief lifting to some degree as I right this. Last night my fiance made a joke about "oh, I can't eat this, I can't eat that ... I need my own toaster ..." and I was hurt by his mocking, even though I know to some extent he was joking. At this moment, I don't feel this is a joking matter. Please tell me if I am alone ... I am sure I am not. Thank you so much ... already.

I am fairly new here and am being investigated myself. I'm vege too so am worried about going gluten free too. Just reading the last bit of your post - you're beginning to cut things out?? I have heard that the stomach does repair itself and can therefore give a false result when they look at it. Im being made to continue to eat "normally" until October for this reason... Just wanted to pitch in really... Apologies if it's no help... I sympathise with the mockery - I'm gonna need a diagnosis for my family to take it seriously...

[amy77]

I'm so sorry to hear you are going through all this. I hope they can find something to help you - whether they determine you need to be off-gluten, too. I haven't yet tried going off-gluten, because I read how you're not supposed to until they've finished all the testing. I'm not sure my doctor would think it's worth it now that I'm basically back to normal - I haven't felt any worse that I've noticed from eating foods with gluten - though, again, I know some people have subtle symptoms. I think I'll see how I feel in another week - and do a follow-up visit to discuss things.

I am glad to find a forum where I can air my frustration. I have had loose stools and abdominal pain since the end of March. I have had irritable bowel in the past and had my gall bladder removed about 10 years ago. I saw my family doctor, ended up in the ER only to find out I had uterine fibroid issues. When the loose stools didn't go away - and I mean diarrhea - I went to the surgeon who removed my gall bladder. I tried four different medications between him and my family doctor. My daughter was moving away in June and I assume some of it was stress related. This week I went to my surgeon to get an order for a colonoscopy, and the physician's assistant decided to test my blood for Celiac. I went home and had two pieces of pizza and a piece of cake and decided to go gluten-free. When they called with my blood test results, I almost laughed myself off my chair at work. Apparently they tested in two parts, and one came back positive and the other negative. I don't know which was which. So, my colonoscopy has been called off and I'm going to see another doctor in order to have a small intestine biopsy performed. I have been four days gluten-free and have some seen some minor relief. I still have very loose stools several times a day, but not having the abdominal discomfort that I was. I love to cook and all the things I normally eat would include, bread, pasta, pizza dough ... and I have eaten whole wheat and grains "thinking I was doing the right thing for my health!" I am working through the shopping and eating, but am feeling very overwhelmed/depressed. I am getting up and going to work ... I know some of this probably has to do with maybe lack of nutrition. The other thing is I decided yesterday (Friday) that maybe I should get a comprehensive blood panel done to see where I am at. Of course, couldn't get done thru the walk-in at the hospital, surgeon closed for the weekend. Finally the family doc's office would order it and draw it themselves. As much as no one wants another test ... I would think it would be helpful where you are at ... and if eating gluten-free would make a difference. I can feel the relief lifting to some degree as I right this. Last night my fiance made a joke about "oh, I can't eat this, I can't eat that ... I need my own toaster ..." and I was hurt by his mocking, even though I know to some extent he was joking. At this moment, I don't feel this is a joking matter. Please tell me if I am alone ... I am sure I am not. Thank you so much ... already.

[T.H.]

He didn't mention anything about gluten intolerance - is this still possible for me?

Yes, it absolutely is. There is no test for gluten intolerance yet, either. You have to simply change your diet, keep track of how you feel and what you eat, and see how it affects you. Just in case it affects whether you think that's worth while...when I was eating gluten, I had TMJ. That has gone away now. The only gut issue I ever had was periodic episodes of constipation.

Other issues (in case they relate):

Depression

numerous soft tissue injuries

frequent illness. If there was a flu or cold going around, I was going to get it.

aches and pains

poor memory

difficulty controlling anxiety or anger, at odd times. Not when you'd expect to be anxious or angry, just that feeling rising up out of nowhere

insomnia

frequently exhausted

inability to lose weight for long

Good luck! :-)

[Sam81]

Yes, it absolutely is. There is no test for gluten intolerance yet, either. You have to simply change your diet, keep track of how you feel and what you eat, and see how it affects you. Just in case it affects whether you think that's worth while...when I was eating gluten, I had TMJ. That has gone away now. The only gut issue I ever had was periodic episodes of constipation.

Other issues (in case they relate):

Depression

numerous soft tissue injuries

frequent illness. If there was a flu or cold going around, I was going to get it.

aches and pains

poor memory

difficulty controlling anxiety or anger, at odd times. Not when you'd expect to be anxious or angry, just that feeling rising up out of nowhere

insomnia

frequently exhausted

inability to lose weight for long

Good luck! :-)

Thank you, I have all of those symptoms...

[Rose W]

It sounds like you're going through alot right now. I really hope it all works out for you, and soon. I understand the constant diarrhea and the fear and not knowing. I also experience severe migraines with a barrage of side symptoms.. I feel like I've been a hypochondriac for the last 3 years trying to solve it all. Now I've been gluten free a single month and am already feeling better.

Some people on this forum have had the fortune of finding amazing doctors that helped them discover their problems and guide them along the way, while others are disenchanted by the medical community. Personally, I had to take matters into my own hands because most of my doctors have been worthless.

Best of luck, and please keep us updated how your tests go.

Dear Arctic Lotus: I'm also brand new here, and have felt like a hypochondriac for the past two years. I'm so thankful to have found this forum!

[Rose W]

Last night my fiance made a joke about "oh, I can't eat this, I can't eat that ... I need my own toaster ..." and I was hurt by his mocking, even though I know to some extent he was joking. At this moment, I don't feel this is a joking matter. Please tell me if I am alone ... I am sure I am not. Thank you so much ... already.

Girl to girl, I say this: Be fully aware that the man you're engaged to marry, will not be supportive of you in your quest to find out what's wrong and get healthy. After my 14 years of marriage to a man like that, I would urge you to postpone the wedding and get to know this guy better. Trust me on this one: if he's going to mock you BEFORE you're married, it will be much worse afterwards. I have the best husband of 4 1/2 years now. He would NEVER mock me, belittle me, or be hurtful or treat me with disrespect, as I try to better myself and be healthier. Here's a hug for support.....

[amy77]

T.H. - thank you for your response. I was wondering if trying to go gluten-free, just to see how it affects me, would be useful. I don't want to be one of those diet faddists though, going gluten-free because it's now the It Diet, when people who really do have Celiac truly suffer without that diet change. If there's no potential for harm in trying to be gluten-free as an experiment, then maybe I will try to... I have had bouts of depression since college, which weren't helped with anti-depressants, and the regular anxiety, exhaustion, and difficulty losing weight.

Yes, it absolutely is. There is no test for gluten intolerance yet, either. You have to simply change your diet, keep track of how you feel and what you eat, and see how it affects you. Just in case it affects whether you think that's worth while...when I was eating gluten, I had TMJ. That has gone away now. The only gut issue I ever had was periodic episodes of constipation.

Other issues (in case they relate):

Depression

numerous soft tissue injuries

frequent illness. If there was a flu or cold going around, I was going to get it.

aches and pains

poor memory

difficulty controlling anxiety or anger, at odd times. Not when you'd expect to be anxious or angry, just that feeling rising up out of nowhere

insomnia

frequently exhausted

inability to lose weight for long

Good luck! :-)