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


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18 replies to this topic

#1 carrielynn

 
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Posted 16 September 2005 - 05:08 PM

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
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#2 Guest_nini_*

 
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Posted 16 September 2005 - 05:12 PM

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!
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#3 Felidae

 
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Posted 16 September 2005 - 05:17 PM

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.
  • 0
Tapioca intolerant
First cousin dx'd with Celiac Disease
Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.
Gluten-free since June 2005
Dx with IBS February 2005
Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

#4 carrielynn

 
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Posted 16 September 2005 - 07:20 PM

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
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#5 carrielynn

 
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Posted 16 September 2005 - 07:22 PM

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
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#6 ravenwoodglass

 
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Posted 17 September 2005 - 05:40 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 carrielynn

 
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Posted 17 September 2005 - 10:31 AM

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
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#8 Merika

 
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Posted 18 September 2005 - 07:33 PM

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
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#9 carrielynn

 
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Posted 19 September 2005 - 07:19 AM

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
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#10 skbird

 
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Posted 19 September 2005 - 08:17 AM

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
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#11 Rachel--24

 
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Posted 19 September 2005 - 11:35 AM

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!!! :angry:

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.
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Rachel

#12 skbird

 
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Posted 19 September 2005 - 03:00 PM

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
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#13 carrielynn

 
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Posted 19 September 2005 - 04:31 PM

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
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#14 ravenwoodglass

 
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Posted 19 September 2005 - 04:53 PM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 Felidae

 
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Posted 19 September 2005 - 05:19 PM

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.
  • 0
Tapioca intolerant
First cousin dx'd with Celiac Disease
Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.
Gluten-free since June 2005
Dx with IBS February 2005
Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)




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