Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Still Angry Sometimes After 2 Years
0

99 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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. ;)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

4

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

5

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,547
  • Topics

  • Posts

    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined