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Diagnoised Celiac But With No Biopsy


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36 replies to this topic

#16 Susan123

 
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Posted 16 January 2004 - 09:04 AM

I only know in my case I need confirmation. Too many other ailments can cause similiar symptoms. Yes I feel better but am I ignoring the real problem that could come back to haunt me 10 years from now. I also have a wheat allergy. So if I eat wheat am I damaging my insides or just having an upset stomach for a couple of hours. BIG DIFFERENCE. I think as Americas are options are endless and we feel we have a right to know what effects our body and what does not. Look how little information/ knowledgeable doctors are available to us that know Celiac. What is research going to tell us down the road 5 years, 10 years and so on. We will never know unless we search for answers. To search for answers is to get the latest tests done. Don't you think that the only way doctors will educate themselves on this disease is if people stand up and requests these test. Without the tests/records the disease is hugely underestimated therefore not important to the medical field.

PS A lifelong comittment to a very restrictive diet requires proof in my opinion!! :)
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#17 seeking_wholeness

 
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Posted 16 January 2004 - 10:03 AM

Aldo,

There are many reasons why a person would want conclusive proof before committing to a gluten-free diet. One of these is that if you change your mind AFTER going gluten-free, you would have to do a gluten challenge to get (possibly) accurate results, thereby undoing all of the hard work you had just put in to begin healing! Other reasons include laying lingering doubts to rest (it's absolutely amazing how quickly humans forget how AWFUL they felt once they start to feel better--just ask any woman who's had more than one baby!), convincing skeptical family members (who can make life incredibly difficult for a self-diagnosed celiac), establishing the diagnosis for legal reasons (e.g. requiring a disbelieving divorced spouse to provide gluten-free food to a celiac child during visitations), proving a family history so doctors will agree to test your children, and educating the uninformed medical establishment and promoting research on celiac disease for the benefit of future generations.

All that said, I am not one of these people, though I certainly understand and respect their decision. I DO sometimes wish, however, that I had had the opportunity to be tested conventionally before the diagnosis walked up and tapped me on the shoulder and said, "Hi. I can explain everything!" After that point, given that I had been nearly gluten-free for almost a year and could not get accurate test results without gluten-loading, NOT going totally gluten-free immediately would have violated my personal ethics--I don't believe in deliberately damaging my body just to prove a point. I realize, too, that not having an official diagnosis may make my life difficult in the future, but I hope this never happens!

I hope this helps clear up your confusion!
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Sarah
gluten-free since November 1, 2003

#18 gf4life

 
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Posted 16 January 2004 - 04:48 PM

I agree with you Susan,

We do have to stand up and make the medical profession take notice. I am at the end of my gluten challenge right now, only 3 more days! :lol: It has been hard, but I do feel there are benefits to having a confirmed diagnosis. I have been sick all my life (I'm 31 now) and I have been told it was all in my head, or stress related indigestion, 16 years of IBS and the list goes on. I KNOW I have celiac disease, but I don't want to ever have any doctor look at me and treat me like I am a hypochondriac again! :angry:
It makes me very mad that I was ignored (and my children were also ignored) for so many years of seeking relief from the symptoms. If we don't make the doctors learn and show them the truth, it may take decades longer for them to "catch up" to what we all know about Celiac Disease.

In many cases Celiacs have other ailments going on (mostly from untreated celiac disease) and once they are gluten free they need to continue to see doctors for these ailments that are not fixed by the diet. This can cause many people to metaphorically run head on into a brick wall if they are self diagnosed...

Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#19 aldociao

 
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Posted 16 January 2004 - 06:34 PM

Thank you all: Susan, Sarah, Mariann

You have convinced me, clearly and persuasively, that it does make sense to be tested. Some of the reasons given are obvious and I should have known about them, but several, like possible legal issues and, especially, the need to educate a mostly disbelieving and woefully celiac disease-ignorant medical profession took me by surprise--shouldn't they be learning about this in med school, and not from their patients? But, after a moment's reflection, I now see that this is probably the only way they are going to be educated about this condition. That thought alone would be enough to get me tested.

I wish I had tested before going gluten-free, but I agree here with Sarah's feelings. I don't want to knowingly subject my body to what is harmful. We do enough of that, unknowingly--and sometimes not so unknowingly--every day. I do understand, however, that there are situations where one's best option is to go off being gluten-free to prepare for testing because of the many good reasons you have given. Thanks again, for helping me to get it, finally. --Aldo
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#20 mg5676

 
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Posted 18 January 2004 - 12:34 PM

Aldo, I am with you!!!! You said exactly what I was thinking too! I think that we as a society have been trained to get medical advice & always believe that the doctor is right, & that is just not the case a lot of the time.

Your body will tell you how you feel, that is the best way of knowing what is right for you & what is not. It's so simple & amazing. Your body doesn't need gluten whether you have celiac or not, it's actually quite harmful to the body even without an intolerance.

I too went undiagnosed since I was a young girl, and went through many doctors & unneccesary tests before I finally got the correct diagnosis. I refuse to have an endoscopy done, I already had the colonoscopy done a year & a half ago & they thought I had colitis, which it took me until just recently to find out that I in fact have gluten intolerance. A gluten free diet has made me feel healthy again, in only a month's time! Why keep going to doctors, when they only have very limited knowledge about this, when your best resource is your own body?

If you went gluten free even for 2 weeks, and then had gluten, your body would let you know how awful that is for you very quickly, now that is a diagnosis! Maggie
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#21 Lily

 
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Posted 18 January 2004 - 08:27 PM

I too decided to have the confirmation on something I already knew. My nutritionist had a fit that I was willing to go back to the gluten challenge. Personally, I am tired of the doctor treating me like there is nothing wrong with me. I want hard proof in my medical records so we can pin some things down quickly if needed should I become ill with something else.

Granny, sorry it took me so long to notice this post. The message board is growing so I'm not seeing all the messages. Next time feel free to shoot me an email. I think you already got your answer, but yes, you can be confirmed by the endoscopy and they did several biopsies in my small intestines as well as my stomach I believe. I know from reading the reports that they took at least 3 biopsies in my small intestines. Best of luck.

Lily
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#22 kvogt

 
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Posted 19 January 2004 - 08:53 AM

I chose not to biopsy. The diagnosis path for celiac disease is 1) blood test, 2) biopsy, then 3) improvement on a gluten-free diet. I don't understand why it is better to perform an invasive procedure, involving sedation before trying a diet change. There are no other diseases that improves on a gluten-free diet. Or that proves itself, once gluten-free for some month, when you ingest gluten. GI doctors can't make any money off of celiac disease, but they can make plenty by performing surgical procedures.
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#23 gf4life

 
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Posted 19 January 2004 - 09:47 AM

kvogt, I know it is insane the way they have the diagnostic process set up for celiac disease, but at least it is not as bad as it used to be. They used to do a biopsy first, then go gluten-free for 6 moths, then a second biopsy, then a gluten challenge for 6 months , and longer if symptoms did not return immediately. All for a diagnosis, which should have been apparent by the absence of symptoms during the gluten-free diet!! I was willing to accept the gluten challenge for myself, but not for my kids. I am an adult and fully aware of what I am doing (although I still think it is insane to purposefully hurt oneself for a diagnosis, yet that is what I am doing...) , but I do not want to put my kids through the same. I am very thankful that I found a doctor for them who will do the gene test first and the biopsy, only if absolutely necessary. Once they are gluten-free I will never put them on gluten again for a challenge. So that is another reason why I am thankful they have a doctor who will test them properly. He doesn't want to put them on a gluten free diet, unless they need it, and he doesn't want to miss the diagnosis if they DO have celiac disease. So I know that he will do everything he can to know for sure one way or the other. If only more doctors would feel that way. My doctors are the opposite, they insist on putting me through every invasive procedure and inaccurate tests before even testing for celiac disease...I have fought for too long, and now my biopsy is tomorrow. This is my last day on gluten and I am so relieved. I am just praying that the doctor will find the damage in my intestines tomorrow, since she will never be able to check again, as I will not go back on gluten for all the money in the world!

Well sorry fo the rant. The past two months on gluten have been awful, so my mind is pretty messed up, along with my entire digestive system...

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#24 Guest_shar4_*

 
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Posted 21 January 2004 - 06:44 AM

Hi there, Thought I would add my 2 cents worth. I went to a Gastro, had mutiple biopsies taken during the endoscopy, and then, even though the biopsies confirmed the diagnosis, she had blood work done to confirm that it was "non-tropical sprue". Even though she agreed that it could not be tropical sprue, since I didn't go anywhere to contract it. (FLorida isn't considered a danger zone for this).

All I know is that I DO have it and I feel better without the gluten.


Thanks

Sharon B)
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#25 Guest_shar4_*

 
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Posted 21 January 2004 - 06:45 AM

Maribet, I do hope you get to feeling MUCH better.

sharon
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#26 jmik

 
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Posted 21 January 2004 - 01:28 PM

Im not conviced that a bx (biopsy) is needed. I bet this will be eventually removed as part of the diagnostic criteria. Once the medical establishment finds enough statistical proof that the blood tests are just as accurate as the bx then the invasive procedure will be unnecessary. Though the point was well made that a diagnostic bx means the medical community can make money off celiac disease, so there is that pressure to keep doing endoscopies.

As for me, I was diagnosed in July 2003. I had been struggling with depression and anxiety for so long, then bruising everywhere. A medline search told me about celiac disease, which was new to me, despite the fact that I've been a nurse for five years! I got the blood test, and that was enough for me. I feel so much better on the diet that it is worth it for me to stay on it. Though it took six month, honestly, for me to TRULY beleive that the inconvenience of the diet was worth it, given that I dont have the more classic symptoms. But I think now my intestines have repaired and I can absorb nutrients again, and therefore my brain chemistry is so much healthier (and happier!)

Bottom line for me: I feel better. Why have an invasive procedure? Who am I trying to prove this to? Just me! I think as a society we have been brainwashed to be dependant on external validation. A part of that is because it keeps our capitalist society rolling, and a part if because we are all strugling with insecurities in one way or another.

I feel lucky to have been diagnosed with celiac disease, compared to so many other diagnoses which cause many invasive tests and medications and the cures/treatments cause so many side effects. The only side effect I have from the gluten-free diet is eating more healthfully and taking better care of myself.

Reading this over I realize that I am still pretty new to the celiac disease and gluten-free world. There may come a time when I do decide to do a gluten challenge, or decide a bx is important to me. Hmmmm.... only time will tell.
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#27 seeking_wholeness

 
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Posted 21 January 2004 - 03:39 PM

jmik,

I agree with you about the biopsy usually if not always being unnecessary, and I wish it would be removed from the "gold standard" for diagnosis. (I think stool testing should be used in place of blood work, too, since it is more sensitive.) The financial incentive will probably prevent this, though, at least for a long time.

I also agree with Susan and Mariann that we DO need to stand up for ourselves with the medical community, or they will never take our symptoms seriously. Sometimes, this means playing by their rules--especially when the diagnosis HAS to be official for some reason (e.g. legal issues, insurance coverage for more frequent bone scans and blood work, etc.).

I, personally, plan to be tested by Enterolab as soon as I can afford it, as a sort of protest against the narrow-mindedness of the medical community. I don't REQUIRE an official diagnosis for any reason (although it would be nice to have one, of course), so I refuse to submit to an outdated and injurious testing procedure. I don't have a primary care physician, anyway, so I will have some leeway in the future in finding one who will accept an Enterolab diagnosis. My problems lie more in the family acceptance department, but for myself, I can tell them that I'm gluten-free and that's just the way it is, whether they think it's necessary or not! (I wonder how long it will take them to notice that I'm not almost-suicidally depressed every time I talk to them anymore!)

I'm in something of a pickle regarding my kids, however. The most immediate problem is that both sets of grandparents live out of state, so they would like to have the kids come and stay for a couple of weeks at a time. If they won't keep the kids on a gluten-free diet, though, such visits aren't going to happen (which irritates me immensely, of course, because I could REALLY use the break)! An "official" diagnosis might convince them to comply, but then, it might not--and it only takes one disbeliever offering cookies on the sly to wreck the whole enterprise. There are times when I'm so desperate for a break from 24/7 "nanny duty" that I almost don't care that the kids are sure to eat gluten if they go away for a visit, but then I realize that *I* will be the one bearing the brunt of their gluten-induced behavior "spasms" after they return--and suddenly, sending them away doesn't sound so inviting anymore! If a concrete diagnosis would GUARANTEE that the kids could visit the grandparents and remain gluten-free, well...it would certainly be extremely tempting, in spite of the fact that it violates my personal ethics (they're already gluten-free, so they would have to do a gluten challenge). Unfortunately, I'm not sure I could trust any promises the grandparents make, anyway! My in-laws are probably actually the more trustworthy--I've seen my mother-in-law keep her word when I didn't believe she would. My own mother, however, offers my children diet soda and coffee over my strenuous objections and says, "Don't tell Mommy!" How could I trust her NOT to give the boys bread, or crackers, or cookies--especially since she doesn't believe we could possibly have celiac disease since it "doesn't run in the family"? I guess I have answered my own quandary here--a gluten challenge isn't worth it for the kids, either!

Well, now that I have made a short story long, I just wanted to mention (with no offense intended) that I am extremely envious of individuals who have only themselves to make a decision for, and only themselves to "prove" the diagnosis TO! Somehow or other, I have to "prove" the diagnosis to my kids' grandparents, or I will NEVER get any kind of substantial break from parenting again--and I REALLY resent that! celiac disease has made my life difficult enough that I need MORE help, not LESS! I only hope that I will find the strength to get through the inevitable confrontations, and that the grandparents will eventually come around and accept the decision that I have rightfully made on my children's behalf, whether they agree with it or not.

Thank you for "listening" to my rant; I've been needing to get that off my chest for a while now. I'm glad the gluten-free diet is working so well for you, and I hope you are having a great day!
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Sarah
gluten-free since November 1, 2003

#28 gf4life

 
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Posted 21 January 2004 - 07:41 PM

Hi Sarah,

Wow, that was quite a post! :D It got me thinking about my own situation, though. I only have one set of grandparents to send my kids to, and that is not going to happen anytime in the near future, I'm more concerned with when they come to visit us! I have not even mentioned celiac disease to them in regards to me, and was planning on waiting until the kids tests came back before mentioning it to my in-laws. I did mention it to my father one day when he was in town, and he didn't seem too interested, so I dropped it. The kids won't be staying with him, as he is single and rents a room oout to someone else. Not good for the grandkids to stay there, for obvious reasons...

I am concerned about my husbands folks. I have spent the last two years talking to my husband about Celiac. He has just recently accepted that I have it, and that was only after the Enterolab results came back positive and I was feeling so much better on the gluten-free diet, and then so much worse during my gluten challenge. Well my biopsy was yesterday and I am on my 2nd day gluten-free forever!! :lol: And I am looking forward to feeling better (although my intestines are already much quieter!) , but the thought of trying to explain the gluten thing to the relatives does not appeal to me. I was thinking about what I will be able to eat when I go there, white rice is about it. Maybe plain salad. They are asian and everything is cooked in sauces that contain gluten, as well as lots of breads and sweet cakes and such. They almost never have just plain old veggies or anything. Even the fruit is in a sauce that I'm unsure of. They like to go to the asian stores and bring back crackers and such for my kids. I'm not sure how I'm going to handle it. It gives me a lot to think about...

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#29 seeking_wholeness

 
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Posted 21 January 2004 - 09:09 PM

Hi, Mariann!

Woo-hoo! gluten-free FOREVER!!! You must feel like dancing for joy!

Visiting family just seems to be a sticky (glutinous??? :rolleyes: ) mess in general. When we visit my in-laws, we usually stay for a long weekend. I think next time (my first visit since going gluten-free) I will make and freeze double recipes of gluten-free entrees to take along, so we will be sure not to go hungry--especially the boys, since I can already hear my mother-in-law scolding me about starving them to death with this restricted diet nonsense! It's certainly easier to take food with me than to cook every meal just for us in a strange (and contaminated) kitchen. And while I COULD cook for the entire family, I always end up underestimating how much to make, and they always say my food is...interesting. (I am a perfectly good cook, if I do say so myself, but I prefer ethnic foods of various sorts, while they are meat-and-salad-with-rice-and-canned-vegetables people.)

When I visit my family, I usually stay for a week (and my husband doesn't come, because we don't want to squander his vacation time). I take along staples that I can't find there (like canned salmon in water with no salt added, Soy Garden margarine, and Tinkyada pasta) and some of my own cookware, so I can be responsible for all of my own meals. This arrangement worked out really well last time. I just need to assemble a repertoire of reliably gluten-free recipes, since lugging all of my cookbooks along is something of a drag!

This coming Sunday we are scheduled to visit my husband's uncle and his wife, but when my husband called them to arrange it HE DIDN'T MENTION THAT WE NEED TO AGREE ON DINNER PLANS IN ADVANCE! He was just planning on "winging it"! GRRR!!! It would be one thing if the kids weren't coming along and we could go out to a fancy restaurant with an obliging chef, but since the kids will be with us I imagine that the best solution will be jointly preparing a meal that we will all enjoy. But that means we need to plan it NOW, so we won't end up socializing while we're standing in line at the grocery store! I'm just frustrated, because I am not comfortable calling my husband's relatives myself, and he hates the telephone, and now I'm going to have to pester him until he calls them again and puts me on the phone with them. I wish he would think of these things on his own, but anticipating the needs of other people (anticipating ANYTHING, actually) is not his strong suit! (A friend of mine had a brilliant insight about men: "Men are like fudge: sweet, but dense--and rarely good for you!" :lol: )

Well, I hope my ramblings have given you some food for thought! :P If you come up with any foolproof strategies for telling in-laws things they don't want to hear (and having them actually listen), let me know!

I hope you recover from your gluten challenge in record time!
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Sarah
gluten-free since November 1, 2003

#30 celiacfreeman

 
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Posted 22 January 2004 - 08:16 AM

You want the colonscopy to rule out cancer that is a related condition in celiacs.
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