If She Doesn't Have Celiac, What Could It Be?

[carrielynn]

I have a girlfriend who I have known for at least 10 years. The entire time she's had chronic gastro-intestinal problems. She's rail-thin and has chronic diarrhea. I know she used to see a gastro doc, years ago, and he had her on all sorts of medications. When she got pregnant, her gastro problems cleared up, but went right back to being bad after having her children.

Since my son was diagnosed with celiac disease I've become more educated about the symptoms and I wondered if my girlfriend has celiac. I asked her the other day if she had ever been tested for celiac and she said she had not. She's given up on doctors and has just adopted, "this is just how it is for me" attitude.

I cannot push her to go see a doctor, especially since I'm not qualified to diagnose celiac and I don't know if it could be something else. Money is an issue with her family, so I don't know what her insurance situation is and I don't want to push her down an potentially expensive path only to discover that it wasn't celiac and she spent money in vain. I said "my piece" and now I have to leave it alone. I have to admit it is frustrating, knowing what I know and her not even taking it seriously. This is not a unique story, I realize.

If it's not celiac, what could it be? Are there other conditions that could cause these kinds of chronic gastro problems? Also, her condition appears to be pretty much the same -- it's always been terrible and it doesn't appear to be getting worse. If she does have celiac, how long could she go before she starts experiencing even worse problems?

Any thoughts?

Carrie

[Guest nini]

my only thought would be that it wouldn't hurt her to just try the gluten free diet and see if it helps. If she's 'over' Dr's, then she might be open to self dx. You could introduce her to this site and let her get educated about gluten intolerance and celiac and the diet... and if the diet helps her, well... there ya go!

[Felidae]

I was diagnosed with IBS (aren't we all?) and my doctor said I couldn't have celiac disease because my blood test was negative. But I have been gluten free for three and a half months I feel great. I'm not scared to go somewhere without a bathroom. I am also very thin. It is expensive to go gluten-free, but for a little piece of mind knowing that you have tried everything, regardless of what the doctors say, may help. Going gluten free certainly won't hurt her.

[carrielynn]

my only thought would be that it wouldn't hurt her to just try the gluten free diet and see if it helps. If she's 'over' Dr's, then she might be open to self dx. You could introduce her to this site and let her get educated about gluten intolerance and celiac and the diet... and if the diet helps her, well... there ya go!

<{POST_SNAPBACK}>

I suggested she try eliminating gluten, but I might as well tell her to go get a PhD in nutrition. If she's going to try that, then she needs to go the whole way and not do it half-heartedly. If she tries and doesn't do it right, then she'll deem the experiment a failure and probably claim she's not celiac.

She's incredibly busy and as we all know, adhering to this diet takes time and commitment. She relies a lot of on fast food and convenience foods because of their hectic lifestyle. And she doesn't even want to take the time to go see a doctor, so does anyone think she'll spend 2 hours roaming Whole Foods trying to figure out what she can eat? Anyone? Anyone?

I have another friend who I think is celiac too. She actually went to a doctor who ran allergy tests and told her she might be allergic to barley. I asked if he tested for celiac and she said no. So she dliigently eliminated barley from her diet, but continued to eat wheat and continue to have the same problems. After months of doing this, she decided she wasn't allergic to barley because eliminating it didn't do any good. (How hard is it to just eliminate barley?) I'm trying to explain to her the difference between a gluten intolerance and an allergy but she doesn't get it. She also got pregnant, her symptoms got better and she thinks she's fine now. I'm wondering if when she stops breastfeeding if her problems will return. (Does this happen with celiac disease and pregnancy?)

So I think it's dangerous for me to suggest elminating gluten to either of these friends unless I'm willing to cook all their meals for them to illustrate what I'm talking about.

It's just frustrating. I know there's not much people will say that will help here, but I thought I would rant a bit about it.

Carrie

[carrielynn]

I was diagnosed with IBS (aren't we all?) and my doctor said I couldn't have celiac disease because my blood test was negative.  But I have been gluten free for three and a half months I feel great.  I'm not scared to go somewhere without a bathroom.  I am also very thin.  It is expensive to go gluten-free, but for a little piece of mind knowing that you have tried everything, regardless of what the doctors say, may help.  Going gluten free certainly won't hurt her.

<{POST_SNAPBACK}>

I think this will have to be a self-motivated endeavor. It's a big shock to be TOLD to go gluten-free. If you decide, on your own, "hey, what if I remove gluten and see what happens" it's not as big of a shock... you're in the driver's seat, so to speak.

Thanks for your thoughts.

Carrie

[ravenwoodglass]

She also got pregnant, her symptoms got better and she thinks she's fine now. I'm wondering if when she stops breastfeeding if her problems will return. (Does this happen with celiac disease and pregnancy?)

I am not sure why but my symptoms also disappeared completly while pregnant, after delivery I was hit with post partum depression so bad I don't even remember my daughters infancy. Symptoms came back with a vengence at our first dinner out. Had D so bad I had an accident and had to leave the restaurant. No warning no pain. Celiac never goes away but the symptoms and severity can change over time. It is going to be tough with your friends, ther isn't much you can do except encourage them recognize the possibility. I too was to buzy to see a doctor for many years after they said IBS I just suffered and medicated until I was comepletely homebound. Then it took 5 more years to diagnose. 15 miserable years out of my life that I will never get back. Sometimes things have to hit rock bottom for people. I watched celiac disease take away my childrens childhood, no picnics, no movies, no dinners out, no going on field trips with them, no walks by the lake, no bike rides, no walking the dog, shopping carts left in aisles of store, I even missed my son's high school graduation. My daughter, 14 at the time, even told me that she would understand if I committed suicide, is that what your friends want? Show them this message. Show them info on celiac and most particularly show them how well your doing and research on the numbers of us that are indiagnosed. You can't make the decision for them but I wish some, somewhere had told me. It is genectic, both of my children have it also, if I had not been such a selfish jerk (and thats what I was, too busy, too much work to do to throughly look for a cause,) and set so much stock in these idiot doctors my adult son would be over 5 feet tall. Okay now I'm starting to cry.. I can't change the past, all I can do is try to prevent others from making the same stupid mistake. Keep encourageing them to explore the possiblity, and show the new Mom this message.

[carrielynn]

She also got pregnant, her symptoms got better and she thinks she's fine now. I'm wondering if when she stops breastfeeding if her problems will return. (Does this happen with celiac disease and pregnancy?)

I am not sure why but my symptoms also disappeared completly while pregnant, after delivery I was hit with post partum depression so bad I don't even remember my daughters infancy. Symptoms came back with a vengence at our first dinner out. Had D so bad I had an accident and had to leave the restaurant. No warning no pain. Celiac never goes away but the symptoms and severity can change over time. It is going to be tough with your friends, ther isn't much you can do except encourage them recognize the possibility. I too was to buzy to see a doctor for many years after they said IBS I just suffered and medicated until I was comepletely homebound. Then it took 5 more years to diagnose. 15 miserable years out of my life that I will never get back.  Sometimes things have to hit rock bottom for people. I watched celiac disease take away my childrens childhood, no picnics, no movies, no dinners out, no going on field trips with them, no walks by the lake, no bike rides, no walking the dog, shopping carts left in aisles of store, I even missed my son's high school graduation. My daughter, 14 at the time, even told me that she would understand if I committed suicide, is that what your friends want? Show them this message. Show them info on celiac and most particularly show them how well your doing and research on the numbers of us that are indiagnosed. You can't make the decision for them but I wish some, somewhere had told me. It is genectic, both of my children have it also, if I had not been such a selfish jerk (and thats what I was, too busy, too much work to do to throughly look for a cause,) and set so much stock in these idiot doctors my adult son would be over 5 feet tall. Okay now I'm starting to cry.. I can't change the past, all I can do is try to prevent others from making the same stupid mistake. Keep encourageing them to explore the possiblity, and show the new Mom this message.

<{POST_SNAPBACK}>

Thanks for your message... I understand your pain. I don't have celiac; my son does -- recently diagnosed. (I am going to get tested, but I suspect this came from my husband's side because many of his undiagnosed family members have suspicious symptoms and they are all getting tested because of that.) But I had postpartum depression pretty bad -- lasted years -- and it went undiagnosed. I'm feeling a lot better now after a lot of therapy (better than even before I got pregnant), but I also feel like I missed out on quite a bit of my children's childhood. I'm also furious at all the doctors we saw for years who only prescribed dangerous drugs for my son and who jeopardized his health... but all we can do is move on and not think about the past anymore. At least we know what's going on now!

You are not alone with regrets about the past. The best thing you can do now is continue to heal by dealing with these emotions in a positive way -- and you may need help for that, so keep that in mind. Otherwise this disease will continue, just with different symptoms. You are not a selfish jerk and that's one place you can begin, by forgiving yourself. Because if you had known about celiac years and years ago, you would have done something then.

Thank you for relaying your experience. I am interested that your symptoms disappeared in pregnancy -- and that's what I wanted to know was possible. That is something I can tell both of these women, especially the one who is still breastfeeding and is probably experiencing the "benefits" of not having symptoms.

Carrie

[Merika]

She also got pregnant, her symptoms got better and she thinks she's fine now.  I'm wondering if when she stops breastfeeding if her problems will return.  (Does this happen with celiac disease and pregnancy?)

<{POST_SNAPBACK}>

This happened with me too. Relief lasted more or less until my period came back, and then I completely bottomed out - mentally and physically.

Your friend could have celiac, IBS, parasites, or something else. Sounds like celiac, but who knows?

Merika

[carrielynn]

This happened with me too. Relief lasted more or less until my period came back, and then I completely bottomed out - mentally and physically.

Your friend could have celiac, IBS, parasites, or something else. Sounds like celiac, but who knows?

Merika

<{POST_SNAPBACK}>

She said she's been tested and poked and prodded for years... been tested for everything BUT celiac. The doctors finally told her she had psychological issues and suggested she go on an anti-depressant.

She doesn't seem depressed to me. I think her situation is getting her down, but she's not inherently depressed.

(Don't get me started on doctors and their anti-depressant wonder pills...)

Anyway, she's fed up with doctors and I don't blame her.

Carrie

[skbird]

No.... don't get *me* started with doctors and their wonderful anti-depressant pills, either! I just wrote on another post about how I was misdiagnosed as bipolar. I remember spending two nights in a "special" hospital after I attempted suicide when I was 23 (I'm 34 now) because I just couldn't get anyone to listen to me, just give me more Zoloft, more Paxil, more Imipramime. Even all these years later, even with telling doctors I have a serious manic reaction to antidepressants, they are still trying to push them on me nearly every time I go.

"I have sciatica and lots of back pain at times..." - "Oh, take this SSRI!"

"I have horrible PMS" - "Then take Celexa!"

"I don't sleep well" - "Try Trazadone!"

"I have digestive troubles and food allergies" - "Well then, here's Paxil, you'll feel less anxious about it all!"

Barf.

It must be really rough having a friend who has such strong symptoms but won't go any further at this point to learn about it. It's something like trying to get an alcoholic to quit drinking, if you ask me. It's only when they finally "get it" that they will do something about it. Giving up gluten is a lot to ask, and while it's so much easier than having to take meds and get blood tests every few weeks (bipolar) and feeling crappy, it still is hard. I would copy a thread here that explains well what you think might help her identify with it, maybe success stories, etc, and pass them on to her. Or find a book at the library or something for her. The more she reads about it, the more she may identify, and be able to see that it's worth a try. Especially the stuff where people have been grossly misdiagnosed by doctors - you will find a very strong core of people here who have little to no respect for doctors (sadly...)

Stephanie

[Rachel--24]

Stephanie,

I've learned the docs think the answer for everything is anti-depressants.

I got the same treatment as you.

Just take this Prozac and in 2 months you'll be brand new.

I tried it for 2 months but nothing changed at all.

Oh..well you didn't take it long enough...why dont we try again.

No thanks.

You need a stronger dose.

No thanks.

I'll give you a different brand then.

NO THANKS!!!

Hello...I was 94 lbs., hair falling out, could barely hold my head up, severe muscle and joint pain, food and chemical sensitivities and somehow a trip to the shrink and an antidepressant are gonna fix all this. GET REAL.

[skbird]

Rachel - we should form a club, the "I survived SSRI's" club! Geez, what an annoyance... why can't they get it through their thick skulls that anti-depressants aren't the end-all be-all of cures???

Blah. Depresses me just thinking about it...

Stephanie

[carrielynn]

Rachel - we should form a club, the "I survived SSRI's" club! Geez, what an annoyance... why can't they get it through their thick skulls that anti-depressants aren't the end-all be-all of cures???

Blah. Depresses me just thinking about it...

Stephanie

<{POST_SNAPBACK}>

I have a decent relationship with my gynecologist. I told him that if he ever tried to prescribe an SSRI (or equivalent) to me, I'd kick his butt. (He's about my age and given the shape he's in, it would be a fair fight.) He said he wouldn't prescribe them to me ever (not that I'd take them if he did), but that he prescribed them to other patients "because they work."

Whatever. They also prescribe them because patients ask for them.

I have a friend who wanted to lose weight and was having problems. Her doctor prescribed Prozac. I have another friend who had restless leg problems. Her doctor prescribed Paxil.

Talk about off-label uses!

Carrie

[ravenwoodglass]

Rachel - we should form a club, the "I survived SSRI's" club! Geez, what an annoyance... why can't they get it through their thick skulls that anti-depressants aren't the end-all be-all of cures???

Blah. Depresses me just thinking about it...

Stephanie

<{POST_SNAPBACK}>

Gee, can I join? I spent 15 years trying to convince the doctors it wasn't all in my head. Even when nerve conduction tests showed damage they still thought it was all in my head. My ex GP actually gave me an antispasmotic combined with valium and never told me! No wonder I was yawning by 2 pm. Too bad it wore off every night at 2am in time for my 3 hour bout with cramps, sweats, chills and the big D. And prozac almost killed my daughter. When will the medical profession learn.

[Felidae]

You know maybe if our doctors had to sprint to the nearest bathroom at any second at any time of day they might actually try to figure out what we had and not just tell us to pop an anti-depressant. Of course we're depressed but that's because we can't go anywhere without worrying about crapping our pants.

[skbird]

You know maybe if our doctors had to sprint to the nearest bathroom at any second at any time of day they might actually try to figure out what we had and not just tell us to pop an anti-depressant.  Of course we're depressed but that's because we can't go anywhere without worrying about crapping our pants.

<{POST_SNAPBACK}>

OK, you officially won - first person to make me laugh out loud today!!! See? I don't need no stinking SSRIs...

That was awesome.

Stephanie

[skbird]

Oh, and on the subject of the antispasmodic with valium - I take on occasion generic Librax, which is librium and an antispasmodic. I told my doc I wish it didn't have the librium in it because it makes me feel hungover, but he said it helps make it work. I don't know if that's because it calms you down or it actually calms down the gut. Whatever. It does work for some gut problems but not all and today I have a three alarm headache from taking it last night, so bah.

Stephanie

[Rachel--24]

Rachel - we should form a club, the "I survived SSRI's" club! Geez, what an annoyance... why can't they get it through their thick skulls that anti-depressants aren't the end-all be-all of cures???

<{POST_SNAPBACK}>

No kidding Stephanie!

It was the OBGYN that first prescribed Prozac....I had refused it from the other docs in the past. This guy was real nice and he somehow talked me into trying it. He said I got all these symptoms cuz I was type A and I pushed myself too far and ended up with depression. He said if I took the Prozac for 2 months I'd be brand new....he actually guaranteed it. I got sucked in and thought maybe he was right and that I would take this pill and somehow recover from this nightmare and magically I would regain the 25 lbs. I lost.

Nothing happened while I was on Prozac...I was exactly the same 2 months later. Actually it probably wasn't even being absorbed cuz of my malabsorption that they seemed oblivious to.

The doctors wouldnt even listen to me. "Just go see the shrink".

Finally I did and she told me not to come back!

She said I had an illness that hadn't been determined yet. Finally someone with half a brain! She reported this to the other doctors.

They dismissed her....probably cuz she's a woman.

Now they're back to saying "Have you seen a psychiatrist yet?" WTF!!! HELLO!!!

[skbird]

I went to a gynecologist yesterday - first woman I even went to, and she is having me get an ultrasound to look for endomteriosis. She said it might not show up but that if it came back find, don't worry, she "won't think I'm crazy"!!! WOW! How unusual. I'm already feeling more confident about some aspects of my health care. She didn't even MENTION anti-depressants and we'd talked about a lot of things.

The last official gynecologist I went to was a man, he was recommended because he is a so-called specialist in PMS. So I went, explained everything, started even to cry a little, laid it all out about how I even got so frustrated with my PMS symptoms that I slapped my husband, and this guy, the SPECIALIST, said I should see a psychiatrist. When I said no way, been there, done that, he said, then can I pray for you? I was shocked but thought, well, if he wants to include me in his prayers tonight, what the hey, so I said sure... but he knelt down right there and pressed my hand to his forehead and started PRAYING out loud! Freaked me out - I'm not a prayer person and this was NOT ok with me, from my doctor!

Anyway, I didn't go back. I have been told since then yes - this guy is GREAT with PMS. Uh, no. Not.

Stephanie