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Feeling Like The Odd Man Out Here

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I feel like the odd man out on these boards. I see so many people who are suffering and can't get a diagnosis. So many wishing they could just get a positive result so that they can figure out what's been going on with them all these years. And...then here I am, diagnosed with celiac after a routine endoscopy for crohns. I insisted on a blood test which came up with results I think are questionable (though the doc and most here don't!). I'm pretty much asymptomatic. I have a multitude of autoimmune diseases, and possibly more on the way; yet my doctors (the specialists) say I'm the healthiest patient they have. My bloodwork looks like crap, but my overall physical well-being is good. Am I the only person here that is healthy on the outside prior to being dx'd with celiac?

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I feel like the odd man out on these boards. I see so many people who are suffering and can't get a diagnosis. So many wishing they could just get a positive result so that they can figure out what's been going on with them all these years. And...then here I am, diagnosed with celiac after a routine endoscopy for crohns. I insisted on a blood test which came up with results I think are questionable (though the doc and most here don't!). I'm pretty much asymptomatic. I have a multitude of autoimmune diseases, and possibly more on the way; yet my doctors (the specialists) say I'm the healthiest patient they have. My bloodwork looks like crap, but my overall physical well-being is good. Am I the only person here that is healthy on the outside prior to being dx'd with celiac?

My doctor said basically the same thing. I went in for a check-up recently and I listed all the medication I was on and talked about Celiac and misc other diagnoses. I said, "I know, it's a lot." She said, "Not at all, you're very healthy! Just look at the people around you and look at what they have to live with." So I did. And I am healthy! I can work, I can eat (just not everything I want), I can exercise, I can go shopping, I can drive a car, and I can raise my kids. Sure, I have a laundry list of diseases and illnesses, but they're under control and I'm not debilitated by them (yet).

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I feel like the odd man out on these boards. I see so many people who are suffering and can't get a diagnosis. So many wishing they could just get a positive result so that they can figure out what's been going on with them all these years. And...then here I am, diagnosed with celiac after a routine endoscopy for crohns. I insisted on a blood test which came up with results I think are questionable (though the doc and most here don't!). I'm pretty much asymptomatic. I have a multitude of autoimmune diseases, and possibly more on the way; yet my doctors (the specialists) say I'm the healthiest patient they have. My bloodwork looks like crap, but my overall physical well-being is good. Am I the only person here that is healthy on the outside prior to being dx'd with celiac?

It is possible to look great on the outside while the damage is being done on the inside

This is a brief definition of Silent Celiacs ::

""People with silent celiac disease have the following characteristics:

* No noticeable symptoms of gluten intolerance

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I read your other post and I'm just curious-- if you are "asymptomatic" what lead your doctors to do the endoscopy to test for chrones? Some celiacs truely are asymptomatic, but very few are. Some people just have less bothersome symptoms or things that they never thought were symptoms until they went gltuen free and noticed they no longer had those symptoms. This board does have a lot of people that have suffered greatly and been at death's door prior to getting diagnosed/going glutne free. But that is not everyone's experience. Don't feel like you can't have celiac just because your health hasn't declined yet to a point of being miserable/disabled/desperate/whatever. Be grateful for the diagnosis now so you can avoid the more serious consequences of having celiac and not sticking to the diet or being undiagnosed--consequences like getting cancer, developing other autoimmune diseases, developing additional food intolerances, are real risks. I hope you will make the right choice for your longterm health now while you are still healthy instead of continuing on in denial until your body starts to break down on you and the damage is harder to reverse.

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nope - you aren't the odd man out. As you can see from my signature I am very active. I've done two ironman triathlons and plan to do at least two more. (iron distance is swim 2.4 miles, bike 112 miles are run 26.2) Most people that know about celiac's because of me equate celiac with "eating well." I know it's not really like that, but I'm still always learning. Another thing to consider is that a lot of times people post for help when they are not doing so well. I've been a celiac for almost a decade now, and you'll note my post level is still pretty low. Although I am working on posting more to help people!!

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I read your other post and I'm just curious-- if you are "asymptomatic" what lead your doctors to do the endoscopy to test for chrones? Some celiacs truely are asymptomatic, but very few are. Some people just have less bothersome symptoms or things that they never thought were symptoms until they went gltuen free and noticed they no longer had those symptoms. This board does have a lot of people that have suffered greatly and been at death's door prior to getting diagnosed/going glutne free. But that is not everyone's experience. Don't feel like you can't have celiac just because your health hasn't declined yet to a point of being miserable/disabled/desperate/whatever. Be grateful for the diagnosis now so you can avoid the more serious consequences of having celiac and not sticking to the diet or being undiagnosed--consequences like getting cancer, developing other autoimmune diseases, developing additional food intolerances, are real risks. I hope you will make the right choice for your longterm health now while you are still healthy instead of continuing on in denial until your body starts to break down on you and the damage is harder to reverse.

very well said glutenfreemanna

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I feel like the odd man out on these boards.

Hey, we're all in this together - the odd, the grumpy, the psilly, the good, the bad & the ugly. :)

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I read your other post and I'm just curious-- if you are "asymptomatic" what lead your doctors to do the endoscopy to test for chrones?

I was diagnosed with crohns almost 20 years ago. It's not active, but they still require routine colonoscopies and endoscopies. This was sort of a fluke finding. I've had an endoscopy about 3 years ago and never heard anything about results suggesting celiac. I don't know if the celiac is a new development and independent of all my other autoimmune problems or something that has always been there and has triggered the autoimmune diseases I currently have. As it is, I have been diagnosed with primary sclerosing cholangitis (autoimmune disease that affects the bile ducts and will likely require a liver transplant in 8 or so years, according to statistics), crohns, and hypothyroidism. There is also suspected autoimmune hepatitis and Sjogrens (I have a strong positive blood test but no symptoms). As far as diseases go, this one is FAR easier to deal with and has a better prognosis than the ones I currently have. I'm really trying not to be difficult here. I'm just skeptical of everything. I went through all of this when I was diagnosed with PSC. I take my health very seriously, even though some of you may have gotten a different impression. I just need to be in this 100% in order to be successful. If I have doubts, I'm more apt to have a difficult time dealing with the dietary changes that are necessary. I know that some think that I'm going to feel better or that my symptoms will improve by going on this diet, but there are NO symptoms to improve.

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I was diagnosed with crohns almost 20 years ago. It's not active, but they still require routine colonoscopies and endoscopies. This was sort of a fluke finding. I've had an endoscopy about 3 years ago and never heard anything about results suggesting celiac. I don't know if the celiac is a new development and independent of all my other autoimmune problems or something that has always been there and has triggered the autoimmune diseases I currently have. As it is, I have been diagnosed with primary sclerosing cholangitis (autoimmune disease that affects the bile ducts and will likely require a liver transplant in 8 or so years, according to statistics), crohns, and hypothyroidism. There is also suspected autoimmune hepatitis and Sjogrens (I have a strong positive blood test but no symptoms). As far as diseases go, this one is FAR easier to deal with and has a better prognosis than the ones I currently have. I'm really trying not to be difficult here. I'm just skeptical of everything. I went through all of this when I was diagnosed with PSC. I take my health very seriously, even though some of you may have gotten a different impression. I just need to be in this 100% in order to be successful. If I have doubts, I'm more apt to have a difficult time dealing with the dietary changes that are necessary. I know that some think that I'm going to feel better or that my symptoms will improve by going on this diet, but there are NO symptoms to improve.

Have you decided wither or not you are going to go gluten free??

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I was diagnosed with crohns almost 20 years ago. It's not active, but they still require routine colonoscopies and endoscopies. This was sort of a fluke finding. I've had an endoscopy about 3 years ago and never heard anything about results suggesting celiac. I don't know if the celiac is a new development and independent of all my other autoimmune problems or something that has always been there and has triggered the autoimmune diseases I currently have. As it is, I have been diagnosed with primary sclerosing cholangitis (autoimmune disease that affects the bile ducts and will likely require a liver transplant in 8 or so years, according to statistics), crohns, and hypothyroidism. There is also suspected autoimmune hepatitis and Sjogrens (I have a strong positive blood test but no symptoms). As far as diseases go, this one is FAR easier to deal with and has a better prognosis than the ones I currently have. I'm really trying not to be difficult here. I'm just skeptical of everything. I went through all of this when I was diagnosed with PSC. I take my health very seriously, even though some of you may have gotten a different impression. I just need to be in this 100% in order to be successful. If I have doubts, I'm more apt to have a difficult time dealing with the dietary changes that are necessary. I know that some think that I'm going to feel better or that my symptoms will improve by going on this diet, but there are NO symptoms to improve.

Intersting. I didn't realize it was possible to have crohns and never have any symptoms at all. The few people I have known with crohns are miserable or have to take strong meds to feel somewhat normal. The same goes for hypothyroidism. I get screened regularly for hypothyroidism because it runs in my family, but I have never known anyone with hypothyroidism that didn't have some symptoms like fatigue, difficulty losing weight, mood swings, etc. I'm not sayign I don't beleive you when you say you are symptom free, not at all. I'm just wondering if perhaps there are symptoms that are minor or intermitent that your are over-looking. These illnesses are all connected. So something you may have attributed to the crohns or the thyroid condition may resolve with a gluten free diet. Again if you have all these diseases and never had any symptoms at all that lead to diagnosis, I apologize. I am not saying I don't beleive you. I am just amazed because usually some symptom leads people to go to the doctor for testing in the first place. Another thought is that perhaps your symptoms are masked by medications you are currently on and you may be able to lower the dosage on some things (with doctor supervision of course) once you go gluten free.

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Oh yes, I didn't mean to imply that my other diseases are symptomless. I was quite miserable with crohns 20 years ago and took a 180 degree turn after being put on steroids for a few months. My latest biopsies look GREAT (in the colon, that is), but I know if I go off my meds (and I'm on the lowest dose), I will suffer the consequences. The doc wouldn't have been able to diagnose me now with crohns if I had just walked in off the street. I'm checked regularly for hypothyroidism and keep up with those meds as well. I'm on a whole SLEW of drugs and medications to keep everything in check. But as far as the celiac, no symptoms. Same goes for the PSC. That was a total fluke finding as well because I went to the ER to get fluids during a stomach virus episode. Just happened to show up on CT, MRI, or some other scan. I consider myself VERY lucky that despite the way my health looks on paper, I'm quite the opposite physically (at least on the surface). Who knows. Maybe I'll feel like a whole new person on a gluten-free diet (like those allergy commercials). Maybe I don't realize that I'm in a fog because I've become so used to it.

Yes, I will be going on a gluten-free diet. The date is set for March 5th. I have an appt with the dietitian on the 3rd, and my DH and MIL will go as well. Then, my BFF will come the following day, treat me to my last gluten meal of her making, then we'll spend the rest of the weekend clearing off shelves, getting rid of gluten-containing things I won't use, and trying to organize the kitchen into a mixed-gluten kitchen (since the kids and DH will still remain on a normal diet until all testing is done). I will need the support of my BFF and I think it's a great, positive way to start my new life.

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You may find that you get a great deal of relief from your other autoimmune issues once you have been gluten free for a while. For some of us the GI tract is the last thing to be attacked not the first. For me it manifested first in the brain and skin and my mother was the same. For my brother it is likely that it was his liver that was impacted the most at first although we both often had 'stomach flu' as children. If I had been correctly diagnosed with DH as a child or young adult I would have been in the same symptomless spot as you. I didn't develop stomach issues that seemed like more than an occasional annoyance until after I had my children in my early 30's. We are here to help you in any way we can with the gluten free lifestyle. Welcome to the board and ask any questions you need to.

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I feel very lucky when I read the stories posted on this Board about people that are sick for years and years and desparately trying to find out why. I was sick from undiagnosed Celiac for all of 1 month (preceeded by 2 months of C. Difficile). Tests showed that the C. Difficile was gone but I wasn't feeling any better, so the doctor tested for Celiac. Prior to that I was perfectly healthly....kind of. Looking back I realize a few minor symptoms started after I ran my first marathon (extreme stress on the body!), but it was nothing severe and nothing that stopped me from running another marathon.

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I was diagnosed with crohns almost 20 years ago. It's not active, but they still require routine colonoscopies and endoscopies. This was sort of a fluke finding. I've had an endoscopy about 3 years ago and never heard anything about results suggesting celiac. I don't know if the celiac is a new development and independent of all my other autoimmune problems or something that has always been there and has triggered the autoimmune diseases I currently have. As it is, I have been diagnosed with primary sclerosing cholangitis (autoimmune disease that affects the bile ducts and will likely require a liver transplant in 8 or so years, according to statistics), crohns, and hypothyroidism. There is also suspected autoimmune hepatitis and Sjogrens (I have a strong positive blood test but no symptoms). As far as diseases go, this one is FAR easier to deal with and has a better prognosis than the ones I currently have. I'm really trying not to be difficult here. I'm just skeptical of everything. I went through all of this when I was diagnosed with PSC. I take my health very seriously, even though some of you may have gotten a different impression. I just need to be in this 100% in order to be successful. If I have doubts, I'm more apt to have a difficult time dealing with the dietary changes that are necessary. I know that some think that I'm going to feel better or that my symptoms will improve by going on this diet, but there are NO symptoms to improve.

http://www.medscape.com/viewarticle/575808

http://www.nutramed.com/celiac/Gluten-LiverDisease.htm

http://www.ncbi.nlm.nih.gov/pubmed/16454610

http://medind.nic.in/icb/t06/i9/icbt06i9p809.pdf

there is a start for ya....

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Thanks for the links Frieze! I couldn't bring up the medscape one.

Some depressing news from them: "In contrast to celiac hepatitis, autoimmune inflammatory liver injury do not seem to benefit from the institution of gluten-free diet by itself, but need a specific immunosuppressive therapy."

And...Does anyone know what this means?

"However in patients with chronic liver disease, attention should be paid, to the risk of false-positive results of serum anti-tissue transglutaminase, due to the different degree of specificity of the methods employed, to the high immunoglobulin concentration26 and to the role of tissue transglutaminase in hepatic tissue repair."

Looks like the one hope I had in this diagnosis has been dashed. I had high hopes of GFD reversing my PSC and giving me hope for a better future - one without a liver transplant in it and one where I have hope to see my children have their own children. Reversing the PSC was the light at the end of this tunnel for me. I'm in a piss-poor mood now. I just feel like not only will my life be cut short by PSC, I now have to deprive myself of things that I really enjoy too. I'm just feeling bitter, which I hate, because it's such a useless emotion and doesn't help me in any way.

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Thanks for the links Frieze! I couldn't bring up the medscape one.

Some depressing news from them: "In contrast to celiac hepatitis, autoimmune inflammatory liver injury do not seem to benefit from the institution of gluten-free diet by itself, but need a specific immunosuppressive therapy."

And...Does anyone know what this means?

"However in patients with chronic liver disease, attention should be paid, to the risk of false-positive results of serum anti-tissue transglutaminase, due to the different degree of specificity of the methods employed, to the high immunoglobulin concentration26 and to the role of tissue transglutaminase in hepatic tissue repair."

Looks like the one hope I had in this diagnosis has been dashed. I had high hopes of GFD reversing my PSC and giving me hope for a better future - one without a liver transplant in it and one where I have hope to see my children have their own children. Reversing the PSC was the light at the end of this tunnel for me. I'm in a piss-poor mood now. I just feel like not only will my life be cut short by PSC, I now have to deprive myself of things that I really enjoy too. I'm just feeling bitter, which I hate, because it's such a useless emotion and doesn't help me in any way.

Please don't give up hope. For one thing the liver is an organ that can regenerate. Maybe the diet won't be a 'cure' but it certainly can't hurt anything and you may find it stops the degeneration in it's tracks. There are quite a few people here that have had elevated liver enzymes and other signs of liver problems that have seen them resolve once they have been on the diet for a while. Some of us have impact to organs and have been told we need to just learn to live with it. I am one of them. It can be very shocking how much the diet can help that doctors have had no hope of us ever getting relief from.

Do keep in mind that going gluten free can cause withdrawl which can hit us mood

wise pretty heavily. You have a right to be angry and sad about this additional diagnosis and if you need to vent your frustration this is a very safe place to do so.

Do keep in close touch with your doctors when it comes to all your meds. You had damage that showed on the endo so as you heal the dosages may need to be adjusted or you may get lucky and some of them may be able to be dropped. You should have seen the number of meds I had to take prediagnosis that I have been able to drop as time went by and I healed. Not saying that is a for sure with you but you never know.

I do hope that things get better for you.

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Thanks for the links Frieze! I couldn't bring up the medscape one.

Some depressing news from them: "In contrast to celiac hepatitis, autoimmune inflammatory liver injury do not seem to benefit from the institution of gluten-free diet by itself, but need a specific immunosuppressive therapy."

And...Does anyone know what this means?

"However in patients with chronic liver disease, attention should be paid, to the risk of false-positive results of serum anti-tissue transglutaminase, due to the different degree of specificity of the methods employed, to the high immunoglobulin concentration26 and to the role of tissue transglutaminase in hepatic tissue repair."

Looks like the one hope I had in this diagnosis has been dashed. I had high hopes of GFD reversing my PSC and giving me hope for a better future - one without a liver transplant in it and one where I have hope to see my children have their own children. Reversing the PSC was the light at the end of this tunnel for me. I'm in a piss-poor mood now. I just feel like not only will my life be cut short by PSC, I now have to deprive myself of things that I really enjoy too. I'm just feeling bitter, which I hate, because it's such a useless emotion and doesn't help me in any way.

sorry about the medscape, you need to sign up....but don't bother for that one, i went back and read more, it is primariy concerned with transplantation.

sclerosing=scarring, if you take away the reason for the scarring, hopefully the rate of scarring will decrease.

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Thanks for the links Frieze! I couldn't bring up the medscape one.

Some depressing news from them: "In contrast to celiac hepatitis, autoimmune inflammatory liver injury do not seem to benefit from the institution of gluten-free diet by itself, but need a specific immunosuppressive therapy."

And...Does anyone know what this means?

"However in patients with chronic liver disease, attention should be paid, to the risk of false-positive results of serum anti-tissue transglutaminase, due to the different degree of specificity of the methods employed, to the high immunoglobulin concentration26 and to the role of tissue transglutaminase in hepatic tissue repair."

Looks like the one hope I had in this diagnosis has been dashed. I had high hopes of GFD reversing my PSC and giving me hope for a better future - one without a liver transplant in it and one where I have hope to see my children have their own children. Reversing the PSC was the light at the end of this tunnel for me. I'm in a piss-poor mood now. I just feel like not only will my life be cut short by PSC, I now have to deprive myself of things that I really enjoy too. I'm just feeling bitter, which I hate, because it's such a useless emotion and doesn't help me in any way.

http://www.liverdoctor.com/index.php?page=liver-problems&subpage=sclerosing-cholangitis

Don't know anything about that site.

http://journals.lww.com/eurojgh/Citation/1994/02000/Primary_sclerosing_cholangitis_and_coeliac.16.aspx

http://www.ncbi.nlm.nih.gov/pubmed/9951920

I read one article along my journey here, that stated as much as a year for liver enzymes to come down in 1/2 the cases studied...not specifically addressing PSC, but this might explain why there doesnt appear to be much positive literature, that there hasnn't been sufficiently long f/u periods. Good Luck

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Seriously - I am going to answer this question with no holds barred:

I think many who self-diagnose really do not know for sure what they have because many of the symptoms your read about celiac can be symptoms of other serious gastro intestinal illnesses:

I have read that many who have severe IBD (Inflammatory Bowel Disease) may be told to avoid many foods including gluten, dairy, red meat, fried foods, starches, etc.). Those with Crohns may also be told the same thing and be given a very restrictive diet.

Now here comes the problem - those who self diagnose decide on their own to stop eating gluten - which makes them feel better - and then when tested for gluten intolerance (blood work), the results may come back negative as it may even with those who have Celiac who have been avoiding gluten rich foods. Then, if the villi has been healing by the avoidance of gluten, even an endoscopy will come back negative as well for Celiac. But, and this is the big BUT, those who self-diagnosis may not have celiac but may have another gastro intestinal illness - and because of that, no matter how you change your diet - you still are not feeling right (many new food intolerances, malabsorption), possibly because the real underlying cause probably has not be found and treated (including medications, if needed).

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The problem is not really a problem, catarific, because any sensible person whose symptoms are not improving on the gluten free diet is always advised to return to their doctor for further work-up and certainly any sensible person would. And I think that most of the people who have come this far, as to have to diagnose their own problem because no one is doing it for them, is a sensible person. :)

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Seriously - I am going to answer this question with no holds barred:

I think many who self-diagnose really do not know for sure what they have because many of the symptoms your read about of celiac can be symptoms of other serious gastro intestinal illnesses:

I have read that many who have severe IBD (Inflammatory Bowel Disease) may be told to avoid many foods including gluten, dairy, red meat, fried foods, etc.). Those with Crohns may also be told the same thing and be given a very restrictive diet.

Now here comes the problem - those who self diagnose decide on their own to stop eating gluten - which makes them feel better - and then when tested for gluten intolerance (blood work), the results may come back negative as it may even with those who have Celiac who have been avoiding gluten rich foods. Then, if the villi has been healing by the avoidance of gluten, even an endoscopy will come back negative as well for Celiac. But, and this is the big BUT, those who self-diagnosis may not have celiac but may have another gastro intestinal illness - and because of that, no matter how you change your diet - you still are not feeling right - possibly because the real underlying cause probably has not be found and treated (including medications, if needed).

You have some good points, but the answers are still the same.

1) If eating gluten-free has made someone feel better, keep on it even if docs and/or tests say that there is no evidence of celiac.

and 2) If someone still has problems, go back to the doc and keep getting tested. Ask doc to ignore gluten-free diet (gluten-free diet can't cause abnormal medical test results). Find out what else could be wrong...but don't go back on gluten unless you really need a medical test report showing celiac, and then go back off gluten after testing is complete. Also, other food intolerances need to be explored and docs aren't usually the best to help with that. An elimination diet (with or without help from a dietitian) is good for this.

I think that there is a limit to medical science and testing and most people on here would agree. Use your docs but also use common sense. My $0.02 worth.

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Seriously - I am going to answer this question with no holds barred:

I think many who self-diagnose really do not know for sure what they have because many of the symptoms your read about of celiac can be symptoms of other serious gastro intestinal illnesses:

I have read that many who have severe IBD (Inflammatory Bowel Disease) may be told to avoid many foods including gluten, dairy, red meat, fried foods, etc.). Those with Crohns may also be told the same thing and be given a very restrictive diet.

Now here comes the problem - those who self diagnose decide on their own to stop eating gluten - which makes them feel better - and then when tested for gluten intolerance (blood work), the results may come back negative as it may even with those who have Celiac who have been avoiding gluten rich foods. Then, if the villi has been healing by the avoidance of gluten, even an endoscopy will come back negative as well for Celiac. But, and this is the big BUT, those who self-diagnosis may not have celiac but may have another gastro intestinal illness - and because of that, no matter how you change your diet - you still are not feeling right - possibly because the real underlying cause probably has not be found and treated (including medications, if needed).

I'm not sure how your points are relevant to the OP. The OP is not self-diagnosing, they are doubting a doctor's diagnosis based on positive blood tests/positive biopsy. Self diagnosed folks are not just going to go on suffering thinking they have Celiac if the diet doesn't work. If the diet doesn't work then they go back to their doctor and do more tests (or they come post here and we tell them to go back to their doctor when it's clear they are really following a gluten free diet). Being gluten free does not prevent testing for other illnesses so it's not hurting anything to be self-diagnosed if avoiding gluten works. I understand the frustration of not being able to get a positive celiac test result AFTER going gluten free, but the reality is that about 20% of people with celiac test negative even while on a full gluten diet. The tests are set up so that when the result is positive it's very, very unlikely to be wrong. But when the test is negative there is room for doubt. A negative test may turn positive later when someone is nearly dead but why should people who are suffering wait until they are deathly ill? They shouldn't. they should trial the diet and see if it helps. Many on this board have found it helped tremendously.

I find it somewhat offensive that you are basically saying our diagnosis is not valid because we don't have a piece of paper agreeing with the reactions of our bodies. When my hair stopped falling out, my mystery rash cleared up, my hands stopped trembling, I stopped having seizures and I stopped sleeping for 12 hours a day while still feeling tired I had the answer I needed. I don't need any further testing to know that celiac/gluten intolerance is the cause of those symptoms and more. Actually I don't even need to know the name of the disease I have. I just know eating gluten free was a miracle that turned my health around. I still get my thyroid checked annually because that disease runs in my family and I'm aware of other autoimmune diseases that may develop along with celiac BECAUSE of my self-diagnosis and involvement on these boards. I think you are painting self-diagnosed people with a bit of a broad brush when you say we are not aware of other illnesses or not seeking out doctor's and testing for other things. Many of us tried the diet out of desperation after being tested for everything else under the sun. Maybe a few are just doing it for a fad or to be trendy and discover they feel better off gluten, but most of the accounts I read here detail years of testing for multiple illnesses with no answers.

Back to the OP, I hope you will try the diet soon as your doctor recommended. You really have nothing to lose and lots to gain by trying it.

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I just re-read my last reply and I apologize if it sounded harsh. I should not reply to things when I was recently glutened and don't feel well. Sorry.

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http://www.liverdoctor.com/index.php?page=liver-problems&subpage=sclerosing-cholangitis

Don't know anything about that site.

http://journals.lww.com/eurojgh/Citation/1994/02000/Primary_sclerosing_cholangitis_and_coeliac.16.aspx

http://www.ncbi.nlm.nih.gov/pubmed/9951920

I read one article along my journey here, that stated as much as a year for liver enzymes to come down in 1/2 the cases studied...not specifically addressing PSC, but this might explain why there doesnt appear to be much positive literature, that there hasnn't been sufficiently long f/u periods. Good Luck

Thank you Frieze for the research. All I found was depressing news (i.e. gluten-free had no effect on PSC). I know it seems stupid, but I sort of grabbed on to this celiac diagnosis as the solution to all my problems. Although I didn't really WANT this diagnosis and questioned it, I was hoping that the sacrifices I would be making would give me hope of a longer life - one where I could see my children grow up. Those first links (and the ones I found afterward) were like a smack in the face. I've been in a real funk since because I just felt...hopeless, discouraged, deflated. I was (well, still am) in a state of mind where I just feel like I should just give up. My body has been turning against me and there seems to be a new diagnosis of another autoimmune disease every year. The list just grows longer. And, I Just Can't Take It Anymore. I NEED hope. I don't ask for any guarantee because I know there is none. But just HOPE. And if there is no hope, I...well, I don't know. I just don't want to even think about it. And, then, I feel guilty about feeling so sorry for myself because things could be SO MUCH WORSE! People are watching their kids lose their battle against cancer or other diseases. People are on their death beds. There are people so much worse off than I am and probably not being such ninnies about it. I feel good! I just ran 4.3 miles. And I will continue to run. Despite how I look on paper, I am healthy. And here I am, WASTING a great day of good health crying about a future I know nothing about because I'm only focusing on the "what if." I'm ashamed of feeling this way, but I can't snap out of it. I know I will eventually, and maybe even tomorrow, I'll feel better about life. Maybe this is just part of the grieving process.

I'm sorry. I know I just verbally vomited all over this post. I'm on an emotional roller coaster. I just need to get my head screwed on straight. I just hate feeling this way. I went through this when I got my diagnosis of PSC and was depressed for a good 6 months before I got a better perspective. What a waste of 6 months. I don't want to walk down those dark roads again. It's a bad mental place to be. I hope to regain my equilibrium soon. Sorry again. I just needed to get that out and I hear this is a good place to do it.

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Thank you Frieze for the research. All I found was depressing news (i.e. gluten-free had no effect on PSC). I know it seems stupid, but I sort of grabbed on to this celiac diagnosis as the solution to all my problems. Although I didn't really WANT this diagnosis and questioned it, I was hoping that the sacrifices I would be making would give me hope of a longer life - one where I could see my children grow up. Those first links (and the ones I found afterward) were like a smack in the face. I've been in a real funk since because I just felt...hopeless, discouraged, deflated. I was (well, still am) in a state of mind where I just feel like I should just give up. My body has been turning against me and there seems to be a new diagnosis of another autoimmune disease every year. The list just grows longer. And, I Just Can't Take It Anymore. I NEED hope. I don't ask for any guarantee because I know there is none. But just HOPE. And if there is no hope, I...well, I don't know. I just don't want to even think about it. And, then, I feel guilty about feeling so sorry for myself because things could be SO MUCH WORSE! People are watching their kids lose their battle against cancer or other diseases. People are on their death beds. There are people so much worse off than I am and probably not being such ninnies about it. I feel good! I just ran 4.3 miles. And I will continue to run. Despite how I look on paper, I am healthy. And here I am, WASTING a great day of good health crying about a future I know nothing about because I'm only focusing on the "what if." I'm ashamed of feeling this way, but I can't snap out of it. I know I will eventually, and maybe even tomorrow, I'll feel better about life. Maybe this is just part of the grieving process.

I'm sorry. I know I just verbally vomited all over this post. I'm on an emotional roller coaster. I just need to get my head screwed on straight. I just hate feeling this way. I went through this when I got my diagnosis of PSC and was depressed for a good 6 months before I got a better perspective. What a waste of 6 months. I don't want to walk down those dark roads again. It's a bad mental place to be. I hope to regain my equilibrium soon. Sorry again. I just needed to get that out and I hear this is a good place to do it.

The depression and other emotions you are feeling are normal to some extent with any auto immune disease, BUT they are also very likely to be caused by celiac disease. Celiac disease and depression are correlated. When I am on gluten my future seems very bleak and I feel like there is no hope at all just as you are describing. You are asking yourself "what if I give up gluten only to have no improvement in health?" Why not instead ask yourself "What if I give up gluten and my other diseases become less serious?" Or "what if I don't give up gluten and my health declines?" Nothing is certain, but it is pretty certain that you have celiac and if you continue to eat gluten your health WILL eventually decline. Maybe it's hard to see that because you feel so good now, but you really should listen to your doctor. If you need to you COULD get a second opinion and further testing before going gluten free. Just be sure you go to someone with knowledge of the tests and knowledge of celiac. You are very fortunate to have a doctor that will diagnose you. Doctors are not usually quick to diagnose celiac because most seem to think it is rare.

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