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Still Angry Sometimes After 2 Years


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#31 Katrala

 
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Posted 27 November 2011 - 06:17 PM

You're not blunt. I'm blunt. You lack simple human compassion towards someone that obviously needs help. Why don't you steer her to this website or give her some suggestions? Maybe she does need more testing or maybe she needs more time on the diet. I think the "fool" is someone who could help another suffering human being, but instead chooses to stand by and call them names like silly and fool.



You said she got somewhat better being gluten free but still feels like crap. Well heck girl, that's pretty much everyone for awhile. For me it was 6 months. Everyone heals at a different pace. Some never get truly well if the damage went on a long time. Maybe she like everybody else has other intolerances due to gut damage. Maybe she needs to eat clean or go dairy and soy free for awhile.

I laughed out loud at your statement about processed foods. You think Kinnikinnick donuts or Udi's bread isn't processed? Gluten free substitute foods are just as processed as anything else that comes off a machine.

Why do you care if she calls it celiac? Calling it celiac is what I tell EVERYONE who diagnosed by dietary response to do. Why? Because number one it helps people comply with the diet. It also helps others take it more seriously. And it just makes things easier and more clear. Intolerance just doesn't sound serious to people and if you would read other people's stories on here, which I doubt you do, you'd see the grief and hell they have gone through from family members who flat out don't believe them or even give them gluten purposely to "prove" it's all in their heads.


Whew.

Go back and read what I've written. It's like you want to disagree with me so badly that you aren't even really reading (i.e. the "blunt" comment.)

Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in. That's not a lack of compassion, that's just common sense.
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Positive Celiac (Blood & Biopsy) - April 2011
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#32 beebs

 
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Posted 27 November 2011 - 06:27 PM

Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in.


Which is totally the right thing - she should be looking at all avenues for her illness.

I think though, because it takes some of us years and years and many, many tests and loads of doctors to arrive at our diagnosis (or lack thereof) it's worth keeping in mind that sometimes tests come back negative even for celiacs. If you are one of the the "had a blood - positive, had a biopsy positive" without years of struggle - then from what I can gather you are in the 'lucky few' - which is awesome, but a negative, two negative, three negative biopsies still does not mean you aren't Celiac, less likely yes - but any Dr who knows anything about it knows that it is not as black and white as that.

The one that really really scares me is when you hear stories that someone has a high positive on the bloods and a negative biopsy and then are told "its not gluten" Just like that, no further investigation! :blink: WTF!!???
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#33 sandsurfgirl

 
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Posted 27 November 2011 - 07:04 PM

Whew.

Go back and read what I've written. It's like you want to disagree with me so badly that you aren't even really reading (i.e. the "blunt" comment.)

Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in. That's not a lack of compassion, that's just common sense.


If she is a friend of yours, then get her on this site. Go over everything with her and make sure she is totally gluten free including her cosmetics and beauty products. Support her in going clean in her diet and cutting out the usual other offenders like dairy and soy for awhile.

Let her know that you found out from people who have lived it that is is possible to have celiac and come up negative on the tests so she feels validated and supported.

And on top of that encourage her to get more testing to rule out other things and be safe.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#34 Chad Sines

 
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Posted 27 November 2011 - 09:33 PM

I had a blood test many years ago when i had a bad spell. Off and on throughout my adult life I had these spells that were almost cyclical. I cannot explain anything behind that at all. I assume it was negative because the doc never mentioned it again. They took out my gallbladder thinking that was the issue. I seemed to get a little better but then had massive issues from no GB. Fastforward to last year. I literally was vomiting 24/7, dizzy, brain fog, desperate and major quality of life issues. My personality changed from outgoing to someone who never got out. At 3 am one morning while hurling and wondering if I would ever get better or just die of this mysterious illness, I recalled that doctor asking if I had ever been tested for Celiac. No idea what triggered that memory. I knew it had to be negative since I never heard about the test. Still I decided what harm could there be to avoid gluten. In two days the 24/7, daily nausea and vomiting stopped. Sure, I have a lot of ongoing issues with recovery. I seem to be intolerant of certain things like milk and soy and who knows what else. I may not be taking CC serious enough. That said, my self diagnosis saved my life. Do I care what a blood test shows? Nope. Do I care to have another upper endoscopy...he** no. It is not like there is anything they could do if they had a positive result.

Many of us find this by trial and error. If it ends the misery that is a good indicator. Many physicians accept that as proof. I spoke with one doctor recently who indicated that alone would be enough for him to sign off on a Celiac diagnosis.

What I know is removing gluten took away 95% of the extreme issues I had. To me that is not an intolerancet issue. I am current lactose intolerant. I get some lower GI issues, but nothing that feels like it could end my life. With gluten, I get major quality of life issues. I honestly thought I was dying. That is more than intolerance and I need no GI or test to diagnose that as Celiac.
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#35 sandsurfgirl

 
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Posted 27 November 2011 - 09:46 PM

Here's a good example of how faulty the tests are. Two of the women who post here have become close personal friends of mine.

One of them was misdiagnosed with lupus and put on very strong medications for years that made her really sick. She was in and out of hospitals, treated for adrenal insufficiency- more strong medication and was nearly dying. On her blood tests only ONE of the markers was high. The doctor told her she didn't have celiac disease. She went gluten free anyways and it literally saved her life. She is 6 feet tall and weighed 97 pounds at diagnosis. If she had listened to the doctor I shudder to think of what could've happened.

Another close friend of mine came up negative twice on scopes and negative on blood tests. Her naturopath suspected celiac and had her go gluten free anyways. She still has a lot of illness but has made huge improvements being gluten free. If she gets CC'd it knocks her down for days.

On my blood tests only one marker was high and the others were normal, yet pretty much all of my very long list of illnesses cleared up when I went gluten free. My latest health challenge is endocrine related. I don't think anybody knows if it could have happened because of celiac, but up until mid September I had been doing great and was working out and really active.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#36 Linus

 
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Posted 27 November 2011 - 09:53 PM

I think most doctors are not specialists in our issues. It is ignorance. I knew nothing about celiac until a friend of mine was diagnosed. I was even more surprised when I was diagnosed. My diagnosis was accidental. I went in for a endoscopy for acid reflux. My primary care doctor also did not know about celiac, but I am glad that he sent me to a specialist. I spent a great deal of time educating myself about the desease and I share my information with my doctor. I guess I am really lucky, he is willing to take on this information and do further research rather than be skeptical. I feel for everyone out there because an earlier diagnosis would be better for all. I pushed for my daughter's testing and she was diagnosed. We all should focus on what we can do to help heal and educate others. I do believe that any doctor who withholds diagnosis willingly should be removed from practice. Ignorance is going to happen. Education is the best way to deal with it.

What really makes me mad is not the ignorance of doctors, but the refusal of people to get tested when a relative has the desease. The worst is learning of others who ignore the positive test all together and go on eating gluten. I have heard more horror stories about people who are lucky to know but choose to do nothing about it.
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#37 Celtic Queen

 
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Posted 28 November 2011 - 07:18 AM

Gluten intolerance / sensitivity and celiac disease are different things.


I disagree with this. Personally, I think Celiac Disease is one part of Gluten Intolerance spectrum. To use an analogy, I think it compares to Asberger's Disease being part of the Autism spectrum.

It frustrates me that doctors don't take Celiac Disease seriously, and they don't even begin to have a clue about gluten intolerance, which is just as serious. And I personally hate the label "Gluten Intolerant." It makes it sound like a minor problem and not the serious issue it is. People (including doctors) seem to take it more seriously if you say you have Celiac Disease instead. "Disease" sounds much more serious than "Intolerance." But all the problems with Gluten Intolerance can be just as harmful as Celiac Disease.
  • 5

Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#38 Chad Sines

 
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Posted 28 November 2011 - 08:30 AM

I agree with you. Intolerance is a minor issue, ie eating this gives me gas or maybe the runs. For most people on here, their issues are serious when consuming gluten.

Imagine the difference in perception to I have a peanut allergy vs intolerant of peanuts. What springs to your mind when you hear both statement? One means you will die, the other means you probably get stomach cramps. I may forget to tell you about peanuts if you just get gas; however, i will be super safe if i feel you might die from it.
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#39 Gemini

 
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Posted 28 November 2011 - 12:06 PM

"Celiac and gluten sensitivity are different." So WHAT? The intolerant/sensitive people on here and the self diagnosed people on here have been just as sick if not sicker than many of the celiacs. And as Beebs pointed out, the TESTS ARE NOT ACCURATE much of the time. You have no choice but to diagnose yourself in most cases. There aren't that many of us who had cut and dry diagnosis like you did. Lucky you. And if someone is intolerant and not full blown celiac they will likely have NO CHOICE but to self diagnose because it would be a rare doctor who could diagnose that.


This is such a timely topic for me and I thank Sandsurfgirl for making this statement. I am a full blown, officially diagnosed Celiac, via blood work which came back off the charts. I am extremely lucky to be able to say that but, quite honestly, even if my blood work came back negative, I would still have gone gluten-free because I was literally on the threshold of death when I was diagnosed. A couple of more weeks and it would have been the ICU and a feeding tube. I think eating gluten free is easy compared to dying of starvation.

My husband I have suspected of having some kind of gluten issue ever since my eyes were opened with my diagnosis. He, like myself, has always had low body weight, even though he eats like a teenage quarterback. He never suffered in your face symptoms but I began to notice that whenever he glutened up, he would be very burpy after wards. He never gets burpy after a gluten-free meal. He also popped anemic a couple of years ago but, as usual, his PCP didn't think that was any big deal. However, over the summer, I began to notice he was getting too thin. He eats like a damn horse, no exaggeration! He weighed himself and had dropped to a low of 128 lbs! To say I was alarmed was an understatement. He is 5' 7" tall.

He also suffers from fatigue to the point where he falls asleep on the couch every night after dinner. I had him gluten up and asked my thyroid physician, who diagnosed me, to do a Celiac panel on him. Went today to get the results and to my horror, she forgot to include the total IgA in the panel, making the whole test invalid, even though his other numbers were very negative for a gluten problem. He did have gene testing done when I was diagnosed 6 years ago and he came back positive for a double DQ-1....gluten sensitivity. Needless to say, I am so frustrated as he was losing weight to the scary point yet we still have no answers. A point of interest is that he is on the low side for Vitamins D and B complex...not in your face deficient but low enough she wants to supplement. So...we have anemia, lower vitamin counts than they should be and weight loss. He went totally gluten-free 2 1/2 weeks ago and has gained 5 pounds back. Is there a connection? I hope so but whatever happens, he has told me he is staying gluten-free for life. He also doesn't want to be jerked around by the AMA but it is all is so infuriating that Celiac's or gluten sensitives have to put up with this BS to find any answers. Any other disease state and these doctors would be getting sued for their ignorance and screw-ups.

I disagree that there is a lot difference between full blown Celiac and gluten sensitivity. You can still develop malabsorption from sensitivity alone, due to all the inflammation in your gut. My advice to anyone in these same shoes is never doubt yourself when it comes to the body you live in. Once you learn the ropes of the gluten-free diet, it's easy to follow and stay on. Yes, I said easy. You don't even have to tell your doctor because it's none of their damn business what you eat. My husband has been very thin his whole life and now that he is in his early 50's, gluten issues come to the forefront. You can't fool your body anymore. If something like 97% of Celiacs are undiagnosed, then why the hell aren't doctors more aware of this and doing whatever it takes to screen people in a common sense fashion? Why? Because we get better on our own, without all their pills and meds and appointments. If many more people ate like us, doctors would have plenty of free time!
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#40 sandsurfgirl

 
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Posted 28 November 2011 - 02:03 PM

Gemini I am so sorry your husband has gone through this. His story like everyone else demonstrates perfectly how serious the flaws in these tests are. The flaws in lack of education for doctors. The flaws in the entire system when it comes to this disease.

The sad thing is that those of us who are passionate and knowledgeable about what needs to change are often dealing with other health issues and we don't have the energy to write congress and petition medical organzations. Or we're picking up the pieces of our lives and accomplishing things we couldn't accomplish for so long.

Despite the studies that Skylark shared, I still think that intolerant people have celiac but it's just not showing up on tests.
  • 2
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#41 Katrala

 
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Posted 28 November 2011 - 03:24 PM

I disagree with this. Personally, I think Celiac Disease is one part of Gluten Intolerance spectrum. To use an analogy, I think it compares to Asberger's Disease being part of the Autism spectrum.


I disagree.

I do believe that following a gluten-free diet can cause a sensitivity to gluten.

And while your analogy is like comparing apple and oranges in many respects (and for the record, it is Asperger's Syndrome, not disease - and note the correct spelling - every effort at making it sound less like like a sandwich made of rear ends is a plus,) the Asperger's community is currently fighting against the inclusion of Asperger's Syndrome into the manual as simply "Autism."


But all the problems with Gluten Intolerance can be just as harmful as Celiac Disease.


Yes, but while some symptoms are the same, what is happening on the inside is different. This is the part that doctors and researchers need to focus on.

NCGI are and Celiac Disease are two different monsters that share a common coping tool. Research needs to go into *both* of them.

Despite the studies that Skylark shared, I still think that intolerant people have celiac but it's just not showing up on tests.


This affects me like my perceived lack of compassion affects you.

Science says X, but I believe Y, so I say that X is not true. It's enough for me to have a headache that I can be assured is not celiac-related.

People with NCGI need *more* research done into their condition. Not to have it covered up by celiac disease when information regarding NCGI could help them.
  • -1
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#42 Marilyn R

 
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Posted 28 November 2011 - 05:26 PM

I had a blood test many years ago when i had a bad spell. Off and on throughout my adult life I had these spells that were almost cyclical. I cannot explain anything behind that at all. I assume it was negative because the doc never mentioned it again. They took out my gallbladder thinking that was the issue. I seemed to get a little better but then had massive issues from no GB. Fastforward to last year. I literally was vomiting 24/7, dizzy, brain fog, desperate and major quality of life issues. My personality changed from outgoing to someone who never got out. At 3 am one morning while hurling and wondering if I would ever get better or just die of this mysterious illness, I recalled that doctor asking if I had ever been tested for Celiac. No idea what triggered that memory. I knew it had to be negative since I never heard about the test. Still I decided what harm could there be to avoid gluten. In two days the 24/7, daily nausea and vomiting stopped. Sure, I have a lot of ongoing issues with recovery. I seem to be intolerant of certain things like milk and soy and who knows what else. I may not be taking CC serious enough. That said, my self diagnosis saved my life. Do I care what a blood test shows? Nope. Do I care to have another upper endoscopy...he** no. It is not like there is anything they could do if they had a positive result.

Many of us find this by trial and error. If it ends the misery that is a good indicator. Many physicians accept that as proof. I spoke with one doctor recently who indicated that alone would be enough for him to sign off on a Celiac diagnosis.

What I know is removing gluten took away 95% of the extreme issues I had. To me that is not an intolerancet issue. I am current lactose intolerant. I get some lower GI issues, but nothing that feels like it could end my life. With gluten, I get major quality of life issues. I honestly thought I was dying. That is more than intolerance and I need no GI or test to diagnose that as Celiac.


This sounds so much like what I went through, even though no doctor suggested the celiac screen, even with family history. I was tested for Lymes disease, MS, Lupus, cancer, etc, etc.

I finally did an elimination diet when I was profoundly depressed and had nausea, vomitting and diahreaaha every day. Amazing.

Another thing that amazed me is that I saw a 50 year old woman write the Dr. that took over Dr. Gott's article that she has Osteoperosis and can't tolerate the prescription drugs prescribed by her M.D.

It's been well documented and studied that early onset Osteopenia and Osteoperosis is connected with celiac disease. The columnist recommended that she continue with the drug therapy, just change brands.

Because of this post, I'm going to write him a letter and copy the medical literature I have about bone disease being related to celiac disease. Maybe if he chooses to re-address the topic, more people (and possibly more MD's, they read the paper) will get informed.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#43 Marilyn R

 
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Posted 28 November 2011 - 05:54 PM

Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)
  • 6
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#44 Lisa

 
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Posted 28 November 2011 - 06:06 PM

Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)


LOVE IT!!!! Keep it up :D :D
The Celiac Sprue Association will supply you with brochures too, which you can litter the waiting room. ;)
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Lisa

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"Not all who wander are lost" - JRR Tolkien

#45 Darn210

 
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Posted 28 November 2011 - 06:24 PM

Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)



Marilyn!! I think that's fabulous. Keep up the good work and I think I will add it to my repertoire of Dr. visit chit-chat . . . and anybody else thinking of following Marilyn's example, don't forget to remind your OB/GYN's that infertility can be caused by celiac disease. ;)
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Janet

Experience is what you get when you didn't get what you wanted.


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