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At My Wits End.....

Guest Kalynn

By Guest Kalynn
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Kalynn
Guest Kalynn
Posted

I am new to this site and would just like to find out if others have certain symptoms. I have the classic symptoms, fatty stools, floating stools, D, some constipation, constant stomach pain (upper middle, especially after eating), irritability, fatigue, trouble concentrating, etc.

The symptoms I am curious about are:

Pain up under the left rib cage, almost constant.

Lower back and lower left back pain.

Muscle spasms w/tender, sore muscles to follow.

Tired all the time

Don't always have regular bm, sometimes twice a day, sometimes 3X a week

Anxiety

Low Potassium

Low Creatinine levels

High LDL Cholesterol

Elevated Lipase levels

I have lost about 18 pounds over the last few months, and although it seems I am no longer losing weight, I can't seem to gain weight. I am barely maintaing my current 116 to 117.

I have calls in to both my PCP and GI docs trying to get one of them to test for celiac disease. I just recently discovered what celiac disease actually is, and to tell you the truth, I kind of hope that's what my problem is because they can't find anything else wrong with me.

Oh yea, do some bouts seem worse than others? Like if I were to consume considerably more gluten at one time than another, I would be sicker for a period of time than others? Does that make sense? I haven't had any D for a while now, but have the stomach pain almost all the time and can't gain weight. I am hungry a lot, but still have trouble maintaining my weight.

I would appreciate all the input I can get. I think the docs are ready to write all of my symptoms off to anxiety, but I know better.

Wish me luck on getting the test done. :P

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nogluten- Newbie
nogluten-
Posted

Hello.

You sound just like I was before diagnosis. I would definately have the test. Good luck and let us know how you do.

angelsea Newbie
angelsea
Posted
I am new to this site and would just like to find out if others have certain symptoms.  I have the classic symptoms, fatty stools, floating stools, D, some constipation, constant stomach pain (upper middle, especially after eating), irritability, fatigue, trouble concentrating, etc.

The symptoms I am curious about are:

Pain up under the left rib cage, almost constant.

Lower back and lower left back pain.

Muscle spasms w/tender, sore muscles to follow.

Tired all the time

Don't always have regular bm, sometimes twice a day, sometimes 3X a week

Anxiety

Low Potassium

Low Creatinine levels

High LDL Cholesterol

Elevated Lipase levels

I have lost about 18 pounds over the last few months, and although it seems I am no longer losing weight, I can't seem to gain weight.  I am barely maintaing my current 116 to 117.

I have calls in to both my PCP and GI docs trying to get one of them to test for celiac disease.  I just recently discovered what celiac disease actually is, and to tell you the truth, I kind of hope that's what my problem is because they can't find anything else wrong with me.

Oh yea, do some bouts seem worse than others?  Like if I were to consume considerably more gluten at one time than another, I would be sicker for a period of time than others?  Does that make sense?  I haven't had any D for a while now, but have the stomach pain almost all the time and can't gain weight.  I am hungry a lot, but still have trouble maintaining my weight.

I would appreciate all the input I can get.  I think the docs are ready to write all of my symptoms off to anxiety, but I know better.

Wish me luck on getting the test done.  :P

<{POST_SNAPBACK}>

I'm not diagnosed (I seem to keep repeating that in my posts this evening) but have symptoms similar to yours that led me to go to my PCP and ask to be tested. He didn't put me off like the time I thought I might have insufficiently treated Lyme disease going back to the 80's (a whole other topic). Before asking, I was afraid he would tell me that celiac disease is actually pretty rare, but he did acknowledge that diagnoses (is that the correct plural spelling) for it seem to be increasing. He did think it odd that I could possibly have it without having trouble maintaining my weight. I'm so glad I asked (prefaced my theory with "I'm afraid you might think I'm silly for thinking this...") but am now on pins and needles waiting for the results, which will probably take at least another week or two because he's not always in that one office and likes to look over the results of all tests and sign off on them before anyone calls the patient.

I say definitely go with your instinct that this could be what is ailing you. If it isn't, then you'll know. And if it is, you can take the steps to heal yourself and help to avoid even greater health risks down the road. Even if I find out I do NOT have celiac disease, all the research I've done has convinced me that it is grossly underdiagnosed and I want to lend my support to those who have been diagnosed and those who have it and don't know it.

Guest Kalynn
Guest Kalynn
Posted
I'm not diagnosed (I seem to keep repeating that in my posts this evening) but have symptoms similar to yours that led me to go to my PCP and ask to be tested.  He didn't put me off like the time I thought I might have insufficiently treated Lyme disease going back to the 80's (a whole other topic).  Before asking, I was afraid he would tell me that celiac disease is actually pretty rare, but he did acknowledge that diagnoses (is that the correct plural spelling) for it seem to be increasing.  He did think it odd that I could possibly have it without having trouble maintaining my weight.  I'm so glad I asked (prefaced my theory with "I'm afraid you might think I'm silly for thinking this...") but am now on pins and needles waiting for the results, which will probably take at least another week or two because he's not always in that one office and likes to look over the results of all tests and sign off on them before anyone calls the patient.

I say definitely go with your instinct that this could be what is ailing you.  If it isn't, then you'll know.  And if it is, you can take the steps to heal yourself and help to avoid even greater health risks down the road.  Even if I find out I do NOT have celiac disease, all the research I've done has convinced me that it is grossly underdiagnosed and I want to lend my support to those who have been diagnosed and those who have it and don't know it.

<{POST_SNAPBACK}>

Guest Kalynn
Guest Kalynn
Posted

Thanks for the reply. It's funny, I never would have considered celiac disease except that I was researching "floating stools" and the possible causes.

Good Luck!

Danijela Contributor
Danijela
Posted

hey kalynn!

I know exactly what your talking about.... I to have anxiety and elevated cholestorol, lack of concentration, extreme hunger and the whole bit. the only difference is i've gained weight... this has been going on for nearly a year for me and i still have to answers. I just finally got an appointment with a GI specialist and i'm really hoping he figures this out soon. I had celiac blood screening done I was told it was negative when I tried to get the list of antibodies that i was screened to make sure it wasn't a false negative i was told not to try self diagnosing (sp)... I guess they don't realize thats the only option i've been left with...

anyway i was just letting you know your not alone and goodluck!

Guest Kalynn
Guest Kalynn
Posted
hey kalynn!

I know exactly what your talking about.... I to have anxiety and elevated cholestorol, lack of concentration, extreme hunger  and the whole bit. the only difference is i've gained weight... this has been going on for nearly a year for me and i still have to answers. I just finally got an appointment with a GI specialist and i'm really hoping he figures this out soon. I had celiac blood screening done I was told it was negative when I tried to get the list of antibodies that i was screened  to make sure it wasn't a false negative i was told not to try self diagnosing (sp)... I guess they don't realize thats the only option i've been left with...

anyway i was just letting you know your not alone and goodluck!

<{POST_SNAPBACK}>

Thanks! About your tests though. You have a right to see them. One thing that I have learned by having been so ill the past few months and having to many tests run by several docs is that I always feel better when I see my results. I have begun asking for copies of them in fact. One of the main reasons I asked about the lipase, potassium, creatanine and ldl levels is that I'm wondering if maybe my pcp or gi didn't just miss this. I would have thought that with my symptoms, one of them would have considered celiac disease. Neither one of them even considered a screening for food intelerence (sp). My point is -- if you want your test results, tell the doc and don't take no for an answer. B)

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angelsea Newbie
angelsea
Posted
One thing that I have learned by having been so ill the past few months and having to many tests run by several docs is that I always feel better when I see my results.  I have begun asking for copies of them in fact.  One of the main reasons I asked about the lipase, potassium, creatanine and ldl levels is that I'm wondering if maybe my pcp or gi didn't just miss this.  I would have thought that with my symptoms, one of them would have considered celiac disease.  Neither one of them even considered a screening for food intelerence (sp).  My point is -- if you want your test results, tell the doc and don't take no for an answer.  B)

<{POST_SNAPBACK}>

Thanks for mentioning this. I think from now on I'll ask for copies of my tests. I've been testing high for cholesterol for several years now (and my doctor's office does always give me ALL the numbers, so at least I know my HDL isn't too out of line with my LDL or I'd worry more) -- I didn't know that could also have something to do with celiac disease. Well, it makes sense -- just about everything has something to do with how well (or not well) nourished we are.

I'm not sure exactly what got me started looking into celiac disease as a possibility (I don't have any close relatives who have or had symptoms, but a first cousin who was only a year older than me had Crohn's disease for years then died of colon cancer a few years ago, so that made me more aware of intestinal problems). My doctor did get me to thinking along the lines of food intolerance and/or allergy after my last annual physical when I showed him how my eczema was flaring up again and he said the rash looked like it could be from a food allergy. When I had it really bad as a toddler, I know my parents were told to not let me eat chocolate. I guess maybe they thought it was a problem with milk, but I was still given plenty of milk throughout my grade school years (and had almost constant eczema, with maybe an occasional break from it during the summer).

I don't know if I have fatty stools or not (don't really check all that much for it) and had read in someone's book (maybe Anne Lousie Gettleman's "Fat Flush") that it is GOOD to have your stools float (I THINK mine sink, but not always, and I'm not positive). One website described stools for one with the condition as sticking to the toilet bowl -- THAT does describe my usual experience (I need to clean the toilet bowl almost every time I use it, but I also live in a very old house that probably has an extremely inefficient flusher!).

Guest BellyTimber
Guest BellyTimber
Posted

Healthier stools will more often sink, and will not tend to stick to anything, flusher or no flusher!

HTH,

:lol:

julie5914 Contributor
julie5914
Posted

I have all of your symptoms except I gained weight (especially size - perhaps distention) instead of losing. I have been gluten-free for a while but I am still healing. My doc is checking my adrenals, but it could all still just be celiac. I have had a few accidents with "natural flavors" having gluten. My muscles are SORE and my back pain feels like I'm pregnant. But I had it where I went up to 138 from 128 while dieting and exercising. When I ate whatever I wanted and didn't exercise, I lost weight! I should have known!

Guest Kalynn
Guest Kalynn
Posted
I have all of your symptoms except I gained weight (especially size - perhaps distention) instead of losing. I have been gluten-free for a while but I am still healing. My doc is checking my adrenals, but it could all still just be celiac. I have had a few accidents with "natural flavors" having gluten. My muscles are SORE and my back pain feels like I'm pregnant. But I had it where I went up to 138 from 128 while dieting and exercising. When I ate whatever I wanted and didn't exercise, I lost weight! I should have known!

<{POST_SNAPBACK}>

I know what you mean. Over the past year, I had gained about 13 pounds and couldn't lose it. I was bloated all the time. Then in July I started losing w/o even trying, and it just kept falling off to the point that I was starting to get frightened. I weigh less now than I did when I got pregnant with my second child. I am maintaing my weight now, but I still can't seem to gain. I had my bloodwork done today and will hopefully know in a week or so. I am going gluten-free either way -- I want to know for sure.

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