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Still Angry Sometimes After 2 Years
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I was talked out of testing by two different GI docs who sweetly reassured me there was no way I had celiac with big smiles. They ruined 7 years of my life as I got sicker and sicker thinking I might die and not knowing what was wrong with me. When I was finally diagnosed I was so sick it took me 6 months to heal.

I have worked through so much anger over this but I know I still have some that hasn't gone away because when I read doctor stories on here sometimes I get enraged.

Do these doctors go to Medical Clown College?? Are they smoking crack?

The things I see on here are just digusting. Telling people they outgrew celiac. Telling people with positive blood tests that they don't have it. Telling people who are positive for celiac that they can eat gluten once in awhile.

When is it going to stop? When will the gastroenterology profession get a clue and stop hurting and killing people?

Thanks for letting me rant. I didn't realize I still had that much anger tonight until I read the thread where a doctor said that celiacs usually don't have abdominal pain and I just lost it. WTF?

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I have anger too, I was told there was no way I could have celiac because I didn't have the genes, I only found out a few months ago that the test was never done :angry: And I do have the genes - but I have already gone gluten free and my symptoms are so severe I can't ever eat gluten again. My kids Paed GI (who is a celiac specialist) says there is no way in heck that I don't have it, but that I'll never get a diagnosis. Not to mention happily eating gluten all of that time when they said there was no way it could be and having it trigger other autoimmune diseases in me. So mad! Don't know if I'll ever be able to let it go.

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I wonder what, collectively, celiac and gluten sensitive people could do to change the situation? It will be the only way to get beyond these kind of anger/sadness responses we have to reading these horrible stories.

If only we could collectively petition or march on Parliament/White House/Medical schools/AGRICULTURE MINISTRIES etc and demand action!

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I wonder what, collectively, celiac and gluten sensitive people could do to change the situation? It will be the only way to get beyond these kind of anger/sadness responses we have to reading these horrible stories.

If only we could collectively petition or march on Parliament/White House/Medical schools/AGRICULTURE MINISTRIES etc and demand action!

I wonder about that too. Where do you start? There has to be an association of gastrenterologists, but many of these docs are old school and the old dogs aren't going to learn new tricks.

The stories we have are downright criminal. These people should lose their licenses. I am not the suing type. I'm always the one who says don't sue but I'm wondering even that. Massive mallpractice suits to scores of misdiagnosed celiacs? I'm sure that would be impossible to organize but when I'm angry it feels good think about it.

I finally after two years was able to write a letter to those GI docs and I'm sending it on Monday. Before now I wouldn't have been coherent and I couldn't have kept he cursing out of it.

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I also think online seems to be the place to make people take notice.

I think if allergy/intolerant/celiacs (especially those in the US) got together on facebook (I have yet to find any substantial groups etc but I am a novice) and started making noices on youtube etc there could be something "heard".

There needs to be some serious research into the range of gluten medical issues. But unfortunately I don't think there ever will be because who/why would anyone pay it for medical conditions that in essence means all you need to do is avoid glutens. In theory if we could all be tested at birth/early childhood solid eating stage, there would be no meds and a compromised grain industry.

Research into the economic impact of gluten related health costs impacting public monies (and it would have to be big $$$ significant) is the only reason governments would sponsor serious and comprehensive research.

I've read a lot about our Australian lab working on celiac "cure" drugs so you can eat gluten. The more I learn and contemplate I wonder if this is really a good thing. I don't want to start a big argument-fest on this topic. Just wonder what is really the best for us people.

Like I said - don't want to create any cranky debate .. just putting thoughts out there.

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Sandsurfgirl,

Good on you! Write that letter. What is the worst that can happen? They don't respond.. Won't be a great surprise will it!

You should copy these and send to the local medical board.

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What bothers me is that I am performing scans, etc on patients in the hospital and when I review their relevant history, red flags go up. I see so many with IBS, various autoimmune conditions, and related symptoms that makes me want to scream at the top of my lungs "THIS PATIENT NEEDS TESTED FOR CELIAC!" Some of these patients have been suffering for years. I consider myself lucky because my main complaint pre diagnosis was the unexplained anemia/iron deficiency. I did have at one point horrible reflux, but in the grand scheeme of things my 2.5 years before diagnosis is nothing compared to some of these patients. I have to be careful what I say. Occasionally I will say something if things come up casually, but I really wish I could do more. One instance stands out to me was a young girl, early 20's that had been having symptoms for about 10 years with numerous visits to the doctor and ED. I was talking to her and asked questions about her being sick. I did find out she had been blood tested and scoped for celiac. She said her blood tests were high positive but her scope negative and they told her she didn't have it. I could feel the anger building up. I talked to her at length and hopefully convinced her to go gluten free so she could start feeling better and get her life back. I even told her if she needed anything to call the hospital on third shift and ask for me. This is where my anger is.

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OMG I don't know how you do it Roda. You are a brave soul. We need more of you in the medical world.

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OMG I don't know how you do it Roda. You are a brave soul. We need more of you in the medical world.

Thanks. For the most part my colleges don't know much about celiac. On the occasion that we have a celiac patient staying at our hospital, the nurses frequently call me and ask me what in the world can they eat(after hours). I have had some of the ED personel refer people to talk to me. One in particular I was emailing through work(she worked at the hospital too). She was so sick having misc. health problems. They brushed off her positive celiac blood work when she was having other problems. Last I knew she wasn't gluten free anymore and very sick.

I even see symptoms in my coworkers. I wonder if I just have celiac on the brain. :P I will hear about their health problems. They all know I have celiac and are great guinea pigs for my food experimentation, but don't see the connection to themselves. They feel bad for me for some reason. I guess it's because they are always cooking and eating and I can't have it. I don't feel sorry for myself at all. I feel sorry for everyone else!

Actually it feels good to get this off my chest. I have been thinking a lot about it lately. I feel I need to do something, but I am not in a position to do so at work. I've still yet to figure out what I'm supposed/meant to do.

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More OMG OMG OMG ..

After my six month learning journey I am recently starting to "see" people and want to tell them about gluten intolerance/sensitivity. IT IS HARD to bite your tongue. My boss is a great supporter having seen what I've been through. We've know each other for many years. I really really want to talk to him about his crazy back scratching ( It is incredibly itchy from what his back against any scratch surface often indicates). And it is exactly as I feel (less so gluten free). He has something like my Rosacea with nothing of the usual culprites to attribute it to.

Sorry if you have previously but would you mind giving us details about your career and gluten-problem/free experiences?

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More OMG OMG OMG ..

After my six month learning journey I am recently starting to "see" people and want to tell them about gluten intolerance/sensitivity. IT IS HARD to bite your tongue. My boss is a great supporter having seen what I've been through. We've know each other for many years. I really really want to talk to him about his crazy back scratching ( It is incredibly itchy from what his back against any scratch surface often indicates). And it is exactly as I feel (less so gluten free). He has something like my Rosacea with nothing of the usual culprites to attribute it to.

Sorry if you have previously but would you mind giving us details about your career and gluten-problem/free experiences?

I have been working as a registerd X-ray/CT technologist for the past 17 years. I have mostly worked in hospital settings. I used to do Mammography before I moved to my current location 8 years ago. I now work nights doing x-ray, CT and lower extremity venous ultrasounds. I would like to go back to school for ultrasound, so I'm not limited to just one type of exam. However, I don't know when/if that will happen. Anything body related and medical stuff intrestes me. I'm never content taking a doctor's word as the final answer without doing my own research. I like to question things. My own research is what has gotten me to where my children and I are today.

As for my gluten issues/gluten free journey, I will try to keep it short.

-Chronic constipation issues as a baby till around age five. Off and on issues with it since then with intermittent bloating and gas pains(thought this was normal for me)

-2000 found out I had hypothyroid but wasn't treated with meds until three months prior to my third pregnancy. Found to have hashimoto's while pregnant with my first son. (had two miscarriages prior to this)

-12/04 my second son was born. He had colic, horrible reflux, and developed rashes. Had to eliminate all dairy, tree nuts, oats and rice. Ate a lot of meats, fruits, veggies. Felt GREAT! Breastfed him till he was 16 months old.

-2/06 had two extreme tachycardic episodes (over 180) Heart was found to be fine.

-12/06 Unrelenting fatigue/reflux almost all year. Saw PCP many times. Found to be anemic and prescribed iron. Told it was probably due being of childbearing age.

-2007 found an endocrinologist to manage my throid. Ferritin was rock bottom. Couldn't tolerate supps.

-5/2008 researched low feritin/iron deficiency/anemia and hashimoto's. I kept finding links to celiac. I was in denial

-9/2008 asked my endo for a blood test. Didn't get the full panel, just the IgA tTG. It was positive.

-10/2008 had my scope/biopsy and was positive. Went gluten free and saw quick relief of reflux and became "regular. Both my boys were tested and were negative.

-1/2010-8/2010 became symptomatic with reflux, steatorrhea, diarrhea. Gallbladder tests mostly normal. Had repeat scope and found alot of imflamation and a stomach ulcer.

-9/2010 To avoid steroids I went back to a very basic diet and started RX creon. I learned that I was reacting to gluten free oat cross contamination in products(already knew I couldn't eat the oats but didn't think about the CC). Symptoms resolved in three months and was able to stop the creon.

-11/2010 found out my youngest son had celiac with a positive IgA tTG no biopsy.

-8/11 Started oldest son on a gluten free trial due to his past medical history and symptoms. All testing is negative for him.

I've done pretty good this year, with a few bumps in the road and my kids are doing good as well. My youngest son has grown 4 inches since he went gluten free a year ago. My oldest son had gained 5 pounds just since Aug. and is starting to grow too. My symptoms have changed if I get CC. I used to get reflux, bloating and constipated. Now I get reflux, rash on buttocks(clears up in about a week), bloating, D and steatorrhea. My youngest son gets constipated and suffers major temper tantrums/emotional upset. Oldest son seems less sensitive, but he gets bloated, gas pains and constipation.

You'll have to pardon my grammer if there are mistakes. I just got off work. ;)

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Roda that would be very hard, but you have power to mention it to people. It can't hurt if you tell a patient about your celiac disease and find a way to mention it to them. That's how I found out. The nurse had celiac at the ER and she said I sounded like her. She said ask the doc about it and when I did, a light bulb went on for him. He said "Yes! I think that's it!" He encouraged me to get tested by my doc and we ran the tests the next day. I went gluten free right after my blood test. I couldn't wait. I was too sick.

Your words can have power and you can save lives!

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Roda that would be very hard, but you have power to mention it to people. It can't hurt if you tell a patient about your celiac disease and find a way to mention it to them. That's how I found out. The nurse had celiac at the ER and she said I sounded like her. She said ask the doc about it and when I did, a light bulb went on for him. He said "Yes! I think that's it!" He encouraged me to get tested by my doc and we ran the tests the next day. I went gluten free right after my blood test. I couldn't wait. I was too sick.

Your words can have power and you can save lives!

That is sort of how I have gotten around the issue before. I'll start chit chatting with the patient and tell them I have celiac. Most people ask me then what it is so I tell them. I'll tell them it might be worth mentioning to their doctor to get at least blood tested. I also tell them they can get a lot of information from the internet and to read about it. I have even taken the time to write down ALL the proper tests for a couple of people who were interested.

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Yelling and screaming only makes us feel better - it doesn't go far with the medical community.

If someone has a positive blood test and a negative biopsy, they need to dig further within that information to find out more regarding the biopsy (standards of the doc to diagnose celiac, areas where biopsy were taken, etc.) If a person feels the biopsy was not done correctly and/or with the best doctor, have it repeated by a doctor that has experience with celiac.

I know emotions play a big role here - I myself had my positive blood test "forgotten about" by a nurse practitioner - and anger is a part of it.

Personally, if I had had a negative biopsy, I wouldn't have gone on a life-changing diet until I was 100% sure I needed to be on it. I would have went back on gluten and continued searching for an answer the moment the biopsy results came back negative. That's just me, of course.

While I fully acknowledge that doctors are more than capable of being wrong (and the best ones admit when they are and learn from their mistakes,) I also know that even the best doctors can get frustrated with self-diagnosis in general. I know someone who was diagnosed negative by both blood test and biopsy, but still went to the GI saying she was CERTAIN she had celiac disease and told the doctor that he/she was wrong.

I think one of the best things the celiac community can do is direct potential celiacs to doctors who have experience with the disease.

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If someone has a positive blood test and a negative biopsy, they need to dig further within that information to find out more regarding the biopsy (standards of the doc to diagnose celiac, areas where biopsy were taken, etc.) If a person feels the biopsy was not done correctly and/or with the best doctor, have it repeated by a doctor that has experience with celiac.

Personally, if I had had a negative biopsy, I wouldn't have gone on a life-changing diet until I was 100% sure I needed to be on it. I would have went back on gluten and continued searching for an answer the moment the biopsy results came back negative. That's just me, of course.

I think one of the best things the celiac community can do is direct potential celiacs to doctors who have experience with the disease.

That would be your choice, but it would be a misguided one. There are no false positives on the blood tests. I've seen so much suffering in real life and on this board because people were told they didn't have celiac after a positive blood test and negative endoscopy. People lose years of their lives due to that type of thinking and they get more damage that is hard to reverse and is sometimes irreversible.

It's inhumane, cruel and a total disregard for the Hippocratic oath for a doctor to tell someone they don't need to go gluten free after a positive blood test regardless of what the biopsy says. Those endoscopies are fraught with problems from the fact that they only take 4 tiny samples of your 15-35 feet of intestines to the fact that so many doctors don't know how to read them.

It's bad enough to have doctors doing this to people but to have other celiacs doling out this advice is like a slap in the face. You are one of the few lucky ones who got positive on both tests and had a cut and dry diagnosis. MOST are NOT that lucky and go through utter hell trying to get better. Utter hell. Read other people's stories.

To say that people need to go to a doctor experienced with disease is blaming the victim. You may as well tell a rape victim she had no business being where she was when she was raped. If you don't know you have celiac you trust the doctors to figure out what is wrong with you. If you suspect celiac you generally are not the expert that you become after you get diagnosed or after you self diagnose.

Most people have limits on their insurance as to which doctors they can see. I only had one choice for GI office and there were two docs in the office both of whom talked me out of testing.

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I know someone who was diagnosed negative by both blood test and biopsy, but still went to the GI saying she was CERTAIN she had celiac disease and told the doctor that he/she was wrong.

This statement here frankly pisses me off beyond belief. Do you know how many people on this board have had negative results on both tests, yet were near death or extremely ill and got better when they went gluten free? I personally know several people not on this board who had this happen to them. Uh, it's called gluten intolerance or gluten sensitivity. That doctor is patently wrong if he did not suggest she try the gluten free diet to see if she is intolerant.

The tests are inaccurate too much of the time. There is a good chance the doctor IS wrong and hopefully that woman went gluten free to give the diet a try. If it doesn't work no harm is done. The gluten free diet isn't going to hurt you.

You must not have been as sick as most of us are at diagnosis or you would never in a million years say anyone should stay on gluten after a negative endoscopy and positive blood test. Or you haven't read many people's stories on here. Wow, just wow.

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Do you know how many people on this board have had negative results on both tests, yet were near death or extremely ill and got better when they went gluten free?

Sure, but it doesn't mean they have celiac.

Gluten intolerance / sensitivity and celiac disease are different things.

Not saying that the person isn't/wasn't gluten-sensitive, but to have both blood tests and biopsy tell you that you don't have celiac and you insist that you do is just a bit silly. This person actually went to ANOTHER doctor and had both blood tests and biopsy repeated and they were both, once again, completely negative. She still insists that she has celiac and that the doctors are wrong. She now eats gluten-free She still feels like crap only a little bit less than she used to.

If you want to go gluten-free, go gluten-free. Eat whatever you want to eat or don't eat whatever you don't want to eat - that is everyone's personal choice. Most people feel better off gluten (and processed foods in general) in part because it makes you much more aware of what you are putting into your body.

No, I'm not a self/internet-diagnosis advocate unless there are other factors (positive family history, etc.)

I didn't tell anyone to not go gluten-free, I'm just saying what I would personally have done if my test results had been different.

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I was talking to my Paed GI who is a world renowned celiac specialist, and he told me a story of a patient of his who had negative bloods and a negative biopsy. He was still sick awhile later so they got him to swallow a camera capsule to look further down and they found heaps of damage. You just cant get down that far with an endo. This kid absolutely has Celiac and it was confirmed by camera. So a negative biopsy and bloods can still mean you are Celiac - just an undiagnosed one. And lets face it - noone is going to test with capsule camera because it is too expensive.

I do understand the frustration of self diagnosis - but with celiac - sometimes you just don't have a choice. I am undiagnosed - but if I eat gluten I could potentially die from it - to the point where above 'Celiac specialist says do not ever eat gluten again because you could die, its definitely Celiac but you'll not get a diagnosis'. I haven't self diagnosed - per se - I don't call myself celiac, I just don't eat gluten - not by choice. Hate being gluten free and if I could change it I would :D

But having a non straight forward case has taught me to be to be very, very wary of Drs - and the fact that 95% of them have no idea about celiac. (that is the figure that above specialist puts on it and from experience I agree)

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I was talking to my Paed GI who is a world renowned celiac specialist, and he told me a story of a patient of his who had negative bloods and a negative biopsy. He was still sick awhile later so they got him to swallow a camera capsule to look further down and they found heaps of damage. You just cant get down that far with an endo. This kid absolutely has Celiac and it was confirmed by camera. So a negative biopsy and bloods can still mean you are Celiac - just an undiagnosed one. And lets face it - noone is going to test with capsule camera because it is too expensive.

I do understand the frustration of self diagnosis - but with celiac - sometimes you just don't have a choice. I am undiagnosed - but if I eat gluten I could potentially die from it - to the point where above 'Celiac specialist says do not ever eat gluten again because you could die, its definitely Celiac but you'll not get a diagnosis'. I haven't self diagnosed - per se - I don't call myself celiac, I just don't eat gluten - not by choice. Hate being gluten free and if I could change it I would :D

But having a non straight forward case has taught me to be to be very, very wary of Drs - and the fact that 95% of them have no idea about celiac. (that is the figure that above specialist puts on it and from experience I agree)

My pediatrician is very knowledgeable about celiac and she said most doctors don't know much about it as well. She also said that they estimate that if you drew a triangle and then put a line across the top fourth of the triangle that little top part would be all the people diagnosed with celiac and the rest of the triangle with the large bottom portion would be all those who have it but are undiagnosed.

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Sure, but it doesn't mean they have celiac.

Gluten intolerance / sensitivity and celiac disease are different things.

Not saying that the person isn't/wasn't gluten-sensitive, but to have both blood tests and biopsy tell you that you don't have celiac and you insist that you do is just a bit silly. This person actually went to ANOTHER doctor and had both blood tests and biopsy repeated and they were both, once again, completely negative. She still insists that she has celiac and that the doctors are wrong. She now eats gluten-free She still feels like crap only a little bit less than she used to.

If you want to go gluten-free, go gluten-free. Eat whatever you want to eat or don't eat whatever you don't want to eat - that is everyone's personal choice. Most people feel better off gluten (and processed foods in general) in part because it makes you much more aware of what you are putting into your body.

No, I'm not a self/internet-diagnosis advocate unless there are other factors (positive family history, etc.)

I didn't tell anyone to not go gluten-free, I'm just saying what I would personally have done if my test results had been different.

Dear Lord where do I start with this? UGH.

First of all, this woman is sick and desperate for answers, so desperate she is repeating a very invasive test and your word for her is silly? Silly? That poor woman. Your cavalier attitude is insensitive and cruel. Unbelievable from another celiac, but maybe you just didn't suffer enough to get some compassion. You've had it easy so therefore everyone else is an idiot when they don't have it as easy and they have to fight for answers.

"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.

Your statement about not being an "self/internet diagnosis advocate" unless there are other factors like positive family history just shows me how much you haven't read. It's likely that 80% of celiacs are undiagnosed which means they may be the first one in their family to even pursue diagnosis. I am the first one in my family to get diagnosed but I'm not the first celiac. I would bet my life savings that if some of relatives who have passed on could have been tested they would've come up positive.

You speak about this with such a condscending tone as if people who have self diagnosed are idiots and that poor woman is an idiot. Calling her silly is just sad.

Dietary response IS a valid diagnostic tool. You are just plain wrong when you say that everybody feels better off of gluten. Only people with a problem with gluten are going to feel better not eating it. That's a ridiculous statement. Eating gluten free can be just as full of junk food as any other diet. Eating healthy has nothing to do with gluten free. People who can eat gluten are better off in terms of fiber consumption because most of our stuff is low in fiber and high in calories and starches.

My son came up negative on the blood tests because he was already eating gluten light by the time he got tested. We saw a direct correlation between him eating gluten and onset of symptoms. No fucking way was I going to subject my 6 year old to an endoscopy just to be sure and neither was his pediatrician. She refuses to scope kids unless it is absolutely a necessity. It's risky and invasive. It is surgery! We decided to put him on the diet and see what happened. It was life changing for him. My previously very ill child became strong and healthy and his whole life changed. If he gets glutened by accident he gets sick. Period. There's the diagnosis.

It's people who think like you who are the problem and why there is so much suffering by people who don't fit into the box, the one that you were lucky enough to fit into. And it's doctors with your type of attitude that causes real long term suffering and even death to those who don't get answers.

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My pediatrician is very knowledgeable about celiac and she said most doctors don't know much about it as well. She also said that they estimate that if you drew a triangle and then put a line across the top fourth of the triangle that little top part would be all the people diagnosed with celiac and the rest of the triangle with the large bottom portion would be all those who have it but are undiagnosed.

My kids pediatrician probably doesn't even know my youngest son is diagnosed and the oldest is gluten free either. This is the same guy who reused to screen my kids when I was diagnosed! At least they got screened by their allergist and the youngest son was retested by our new allergist. The only reason I stay with the ped is because right now it is the only option locally and because of insurance. I make it a point to see the nurse practitioner when I can. I love the nurse practitioners that he has there. They are on board with the gluten free. I had similar issues getting referals when my oldest was having so much sinus issues. I took it upon myself to take him to an ENT and allergist. Low and behold he had bad changes in his sinusus(found on CT) and ended up starting allergy injection and still does. All I have to say is I am glad we have a good nurse practitioner. I heard through the grapevine at work that my doctor and a couple of others are going to try and get pediatrics in their office. I'll so switch if that ever happens. My new PCP is pretty fresh and very into treating the cause and not just symptoms. My very first interview with her I knew she was a keeper because she had better than average knowledge about celiac.

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Honestly Roda, I tell everyone he was diagnosed by blood test. Nobody is going to question that. If you go to a new doctor they will just mark it down and not ask. I got a new GI recently and he didn't say "Hey let me see those blood tests from 2 years ago." It's easier that way.

The whole reason I started this thread is because I read the thread about the boy who is on crutches and can barely walk. He had positive blood and negative endoscopy and was told that he didn't have celiac. So he isn't gluten free and he continues to deteriorate. That poor kid is losing his life and his parents won't try a dietary change that could save him because of the misinformed attitude of that doctor.

Then on this very thread we get that same attitude from another celiac! How can we ever educate the world and educate doctors to save lives if we can't even educate our own?

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I tell everyone that we all are diagnosed. I feel for that kid in that post too. His doctor in the very least should have recommended him trying the diet. A well educated dr. in celiac should KNOW the problems with biopsy and the rest of the gluten spectrum.

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Yes, I'm blunt.

Dear Lord where do I start with this? UGH.

First of all, this woman is sick and desperate for answers, so desperate she is repeating a very invasive test and your word for her is silly? Silly? That poor woman. Your cavalier attitude is insensitive and cruel. Unbelievable from another celiac, but maybe you just didn't suffer enough to get some compassion. You've had it easy so therefore everyone else is an idiot when they don't have it as easy and they have to fight for answers.

Negative blood. Negative biopsy. Times two.

She's a fool for not looking at other causes. Gluten is not the root cause of all problems. She could have something very serious (non-gluten) going on that she is ignoring because she's convinced she has celiac. She refuses other testing because she's so certain (testing, btw, that is paid by insurance.)

"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.

Diagnosing yourself with gluten sensitivity is different than diagnosing yourself with celiac (again - unless there is a family history, etc.)

You speak about this with such a condscending tone as if people who have self diagnosed are idiots and that poor woman is an idiot. Calling her silly is just sad.

See my first response in this section.

Dietary response IS a valid diagnostic tool. You are just plain wrong when you say that everybody feels better off of gluten. Only people with a problem with gluten are going to feel better not eating it. That's a ridiculous statement.

Gluten is in many processed foods. My statement was regarding that people who avoid gluten (and thereby processed foods containing gluten) are likely to feel better.

If you would like to take my statements and turn them into absolutes, I don't care. I qualify my responses purposefully.

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I got an absolutely dirty look from my doctor when I asked her about testing options for celiac. I was already Gluten-Free at that point, because gluten just makes me sick sick sick. So I shrugged and continued with the diet. I don't need special accomOdations, nor do I need someone's permission to tell me what I can and can't eat. Since september my migraines have almost completely resolved, the D and weight loss have stopped. I gained two pounds! My hair has mostly stopped falling out. Still having many joint problems, but I narrowed that down to a pretty severe case of Zinc deficiency. Two cold eeze in the morning and my snap crackle pop joints and pelvic instability have mostly resolved in just a couple days. There are great doctors out there, but mostly I've needed to be my own diagnostician and advocate.

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    • Biopsy confirmed?
      Did they say if the villi are damaged?  did they do a full Celiac panel or just a TTG? 
    • Biopsy confirmed?
      Hi all. First post here :-)  I recently received my biopsy results from my endoscopy which showed lymphocytes in my duodenum. My surgeon said this is possibly celiacs and ordered a blood test to confirm. I had the blood test done 2 years ago and it was negative. So my question is could it really be ceilac and has this happened to anyone else? Also does anyone else know if this could be a false reading from the biopsy? And if the blood test is negative will he still assume celiac ... Again I would love to hear your stories on diagnosis if similar to me, So many questions! I get my results on Friday as I have to have further testing for other non-related things from the endo and just want to know the likelihood I guess. Feeling a little daunted and need to start thinking ahead if this is happening  Thanks in advance xx
    • Question on posting
      I have brought this to Admin's attention. 
    • How effective is HD skin biopsy after being gluten free for a year
      I think your Doctor is at fault for not making clear to you what you needed to do in the lead up to the biopsy. If dairy is the suspected cause and you've since cut it from your diet is it possible the biopsy could become invalid? You could end up having a pointless invasive procedure with the danger of a false positive/negative at the end. I think you should get in touch with your Doctor, let them know you've removed dairy from your diet and ask if that will impact on the results.  On the question of psoriasis or DH, that's something I've wondered about as well. Most of my skin issues improved  after gluten-free but they didnt resolve. Dairy has a big impact on them to this day. Whereas when, a year after going gluten-free, some inadvertent exposure to barley malt caused what I think was DH on my elbows it went after I removed the suspect food from my diet.  Hopefully thread below is of interest, best of luck with your diagnosis and ongoing journey to health      
    • Abuse and celiac/gi problems
      my personal symptoms above. Did another blood test and results came negative again, (gene test also negative). Found something that's interesting, useful for those that receive negative results and still convinced they have celiac or have some sort of food sensitivity(like i was). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2834720/ more links: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4479362/ http://bit.ly/1UlUTpq Kinda solved it for me, cause i personally went through all types of abuse as a child, had symptoms listed above, got better now, hardly any symptoms.  As a note my siblings went through similar situations to a lesser degree, and they both have GI issues growing up. Feel free to ask, and inform people about this, cause all those times the doctor said IBS or 'its in your head' it might be true. ( ~3 doctors I went for celiac didn't believe I have it, just cause i'm asian ;\)
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      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
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      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
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      Hi Peaceflower, Just wanted to say thank you for the chat.
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