Post Egd/gluten-challenge Rant

[julirama723]

I just got off the phone with the doctor's office and I am LIVID.

I am convinced that in the 2-month span that I've been researching and reading about celiac disease and gluten intolerance, that I know MORE than the so-called professionals at that office.

I received the results from the biopsy today, and they were negative, just as I'd suspected. I did not expect to hear the other information I recieved.

"The doctor only took 1 sample, as your intestines looked normal. Yes this is standard procedure."

"The biopsy came back normal. There were no celiac cells present."

<I thought the biopsy looked for atrophy> "Oh, no, atrophy has to do with muscles when they become weak."

<No, I am referring to vilious atrophy, I thought the biopsy looked for vilious atrophy.> "Oh well, when people have celiac disease, they have a certain look."

<I am VERY upset that only one sample was taken. I was under the impression that NUMEROUS samples, 8-12+ would be taken.> "Everything looked normal. You probably just have a gluten allergy. Maybe try changing things in your diet and eating less gluten?"

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I have come to the conclusion that I will never know if I have celiac disease or not. It seems I got the run-around from this doctor. If I had been told he was only taking one biopsy I would not even have bothered with the test! Even with multiple samples, I knew the surety of receving a positive diagnosis would have been iffy.

It's like he did the test to shut me up, but did a half-assed job with it which isn't fair. I, of course, had no way of knowing how many samples they took until after. And I'm pretty sure that the nurse mentioned "multiple samples" before I was given the pain meds.

So I just needed to get this off my chest. I have no faith in these people anymore. It's one thing if they'd have been precise and followed through and done things as they should have, as well as having KNOWLEDGABLE nurses and support staff. But to have the discussion I did with that nurse, and to hear about what little they did during the procedure, it makes me sick.

All this procedure did was pay for his mortgage payment and utilities this month, I have no peace of mind from this.

So do I give up and join the ranks of the self-diagnosed? I'm never going back to gluten, that is for sure. Do I need to pursue this any more with medical professionals? What do I do now? I'm horrified that I'll end up with some nasty autoimmune problem, all because the doctors didn't care enough about me to give me the time of day.

Thanks for listening...

[dilettantesteph]

I am sorry that you had to go through the pain of a gluten challenge for that. You have every right to be angry. Maybe you should look for a better GI.

[purple]

My sis had a partial hysterectomy that wasn't really needed but the doc talked her into it. As she was leaving the office she over heard her doc tell someone, "Jamaica, here I come!"

He cared more about his vacation than her health.

So sorry you have to go through so much!

[Mother of Jibril]

I'm SO sorry.

Doctors can be shockingly incompetent when it comes to autoimmune disorders. Unless they come up with a new test for celiac disease, I'm in the same boat as you. I'm not willing to go back on gluten to maybe get a positive test, even if I do find a competent doctor.

Here's what I've been thinking lately... what would be the benefit of having a firm diagnosis?

1) Personal reassurance that I'm doing the right thing

2) Justification for other tests (bone scan, vitamin and mineral levels, etc...)

3) Maybe better prenatal care... IF we want to try again

Personally, I already know I'm doing the right thing... every time I eat gluten I get a rash, constipation, a headache, and I get soooo irritable. I can ask for other tests that I think are necessary; I'm going to ask for a bone scan, B-12 level, and Sjogren's test later this month. And if this new doctor isn't helpful... I'm going to keep looking for another one! I could even order the tests myself if I get really desperate (I just know it will cost more).

I'm pretty bitter on the prenatal care issue. Knowing what I know now... I'm not sure I can handle trying for another child (even though my husband would like to). Especially if the Sjogren's test comes back positive. I might feel better if I could find an OB who actually knows something about autoimmune disorders. I don't know if that's even possible in the town where I live.

Anyway... what would you hope to gain from a positive diagnosis? If you're firm about the diet, other people will follow your lead. Let's say you need to have surgery. Is the hospital really going to say, "Well... I'm not sure we can get you that gluten-free diet... you never had the positive endoscopy!" Probably not Plus... even if you were 100% sure you have celiac disease, you still might get a toasted cheese sandwich on your tray. I'm on a pork-free diet for religious reasons (which is protected by law), but I still got a big piece of ham on my tray when I was in the hospital after giving birth.

[RiceGuy]

I'm also sorry that you've had such trouble with doctors. For awhile I did too, and gave up on them some time ago. I think we've all been there to some extent.

Many members seem to like Enterolab, which you can apparently use to get some tests done without a doctor. It's also supposed to be much more accurate, and can be done even after going gluten-free, up to a point.

[sbj]

I just got off the phone with the doctor's office and I am LIVID.... I received the results from the biopsy today, and they were negative, just as I'd suspected. I did not expect to hear the other information I recieved. "The doctor only took 1 sample, as your intestines looked normal. Yes this is standard procedure." "The biopsy came back normal. There were no celiac cells present." <I thought the biopsy looked for atrophy> "Oh, no, atrophy has to do with muscles when they become weak." <No, I am referring to vilious atrophy, I thought the biopsy looked for vilious atrophy.>... It's like he did the test to shut me up, but did a half-assed job with it ... I have no faith in these people anymore. ... All this procedure did was pay for his mortgage payment and utilities this month... Do I need to pursue this any more with medical professionals? What do I do now? I'm horrified that I'll end up with some nasty autoimmune problem, all because the doctors didn't care enough about me to give me the time of day.

I am so sorry that things did not go as planned. I know you had high hopes for a definitive diagnosis and that you also really liked this new GI. I wonder why things went so wrong?

I wanted to point out one thing regarding 'looking fior celiac cells' versus villous blunting: they really look for both things. That is, they don't only look for blunting of the villi - this can be a little misleading in some cases. They also look for intraepithelial lymphocytosis and/or increased lamina propria lymphoplasmacytic infiltrates. So they do mostly look for a cellular reaction in the mucosal layer and the blunting is sort of secondary.

They should have taken more than one tissue sample - especially if that's what they told you they were going to do. Personally, my GI thought my small intestine looked fine, too, and so he also took only one sample "as a precaution." Luckily that was enough for the pathologist to see celiac. The standard procedure when the intestine looks okay is to take only one sample. However, since they suspected celiac to begin with they should have taken more.

I wanted to offer some thought that might bring solace?

You once liked this doctor's approach. He took a sincere interest, remember? He didn't rule out celiac, he agreed to give you the celiac panel, and he offered the endoscopy as your choice. It doesn't seem fair to say that he did this to get richer when he left it up to you to choose whether or not to have the endoscopy. You said that he never put any pressure on you to do it or to take the challenge. He was also concerned about your thyroid, lupus, and sleep apnea. He even referred you to an allergist. He also suggested that you go with a gluten-free diet even if he couldn't diagnose celiac if you felt it was a gluten intolerance. Seems like he screwed the pooch because he didn't take muiltiple tissue samples but beyond that he sounded like a model doctor.

As far as auto-immune disorders keep an eye on your body. But so long as you don't ingest gluten your gluten intolerance shouldn't set anything else off.

I hope you are well and I hope you can find some solace in forgiveness. If I were you I would insist on speaking with the gastroenterologist personally.

[julirama723]

I guess part of the reason I am seeking an "official" diagnosis is because right now, I feel everybody (with the exception of my fiance) thinks it's in my head. And even sometimes he gets annoyed, thinking I'm playing doctor--which frustrates me to no end. I feel like an official diagnosis would shut everybody up.

Even my celiac mother, who has no knowledge of celiac disease other than what her doctor tells her, and has no interest in doing any reading on the subject, says, "Oh your tests are negative, there's nothing wrong with you. Trust the doctors. They know what they're doing." (But then again she is very hesitant to follow any advice I offer. Earlier this summer, when her diarrhea started, I suggested she try the SCD to see if that helped any, until she could see her regular doctor [my parents were 2000 miles from home at the time.] I said that a the SCD works wonders for GI problems. She dismissed it as me off on one of my "health-nut" ideas and kept eating her grilled cheese sandwiches and licorice, claiming those were the only things that didn't make her go to the bathroom.)

Someone had posted in another thread that because they're not an "official" celiac, they're seen as somewhat of a drama queen--I have this same fear, when I couldn't be further from the truth. It seems like the ONE time I'm trying to be proactive about my health (and even then, not very proactive, I've been having problems for over a year) it's amounting to nothing or it's seen as me being the hysteric make-mountains-out-of-molehills woman by the health care professionals I've seen! It takes a LOT for me to go to the doctor--I do not like hospitals, I don't like going to the doctor, I would rather avoid them if possible. So going through all of this has not been enjoyable. I thought for once I was going to be responsible and active in making myself healthier (rather than hiding symptoms for 4+ years, like I did with Graves Disease) and now I feel like it wasn't worth the time and energy and money.

Apart from not being labeled a drama queen, I want an official diagnosis because my family seems disease-ridden. I don't mean that in an unhygenic way, but as a genetically-predisposed way. Diabetes, lymphoma, colon cancer, IBS, celiac, graves disease, reynaud's phenomenon, kidney failure/kidney stones, gallbladder problems/gallstones, leukemia, heart attack, stroke, high blood pressure, arthritis, and a multitude of other problems have been passed down to me. I do NOT want to end up like my relatives. I don't want to die when I'm 50. I don't want to spend the end of my life hooked up to tubes. I don't want to lose quality of life.

I guess I could be worrying for no reason, but when I look at my family medical history, and knowing I have the chance right now to prevent/stop many of those things from happening, it makes me want to be as thorough as possible.

[julirama723]

Thank you all for your replies so far!

sbj--I should have been a bit clearer. The "doc" I saw in the office visits is not the same one who does the procedural work. Since I'm a new patient, I see the PA, and the gastroenterologist at the center is the one who does the procedures. I really liked the PA, and still do like him. I have my appointment with him next week and we shall see what his thoughts are on all of this. He seems forthright and knowledgeable. I was so relieved that he saw the value of pursuing this, rather than just saying "There's nothing wrong with you" like the first doctor (a local doctor) I saw. He thought that with such a strong dietary response during the challenge, as well as a direct relative, and SIgA difficiency, an endoscopy was more than appropriate.

I had really high hopes for the GI doc, who I had not seen before the EGD/colonoscopy--I even have a couple of coworkers who had been to the same doctor and they said nothing negative--they didn't say anything positive either, which should have been a clue! They did not tell me until after my procedure that they did not like him and switched doctors!

As for the "celiac" cells, I asked her if she meant lymphocytes, and she replied, "No, celiac cells." So I'm not sure if I was the one who was confused, or if she was.

[sbj]

You should also ask that the tissue sample be looked at by a different pathologist. And I would file a report with your insurer about the GI. If you specifically requested multiple samples and he told you he would take multiple samples, then you have a legitimate grievance. Also, if you are still undertaking the challenge you might be able to get another endo - they're not really that bad! Keep an open mind - maybe your doctor will have some other ideas about what to look for. Maybe you don't have celiac but are gluten intolerant. Maybe a gluten-free diet will help. The endo will also help as a baseline for future comparison work. All of this effort hasn't been wasted. You got a CBC, tested for lupus, tested for thyroid - you are definitely ruling things out! Remember, you don't necessarily want a celiac diagnosis, you want a correct diagnosis. I hope you can get one. Go back and see your doctor and hit the drawing board again. Don't give up.

[WW340]

First of all, it is possibly not the doctor who is ignorant, but more likely the person delivering the message. I would see the PA that you like and ask them to request a copy of all the records, including the pathology report. Until you actually see that, you can't be sure of anything.

It is unfortunate that you went gluten free prior to having the biopsy. I really think the greatest chance of finding the disease is after years of subjecting your body to gluten. If a person is a fast healer, the damage could go away rather quickly and not return until it had been subjected to lengthy exposure again.

I also would not let everyone else's opinion get to you. It really does not matter what someone else thinks. You have the right to treat your body the way you want to treat it. If your Mother is a confirmed celiac, and you have problems with gluten, then at the very least, you are at risk for going on to develop the disease if you haven't already.

I feel like this is an attitude you need to change in yourself, as you really can't change others. Make your decision and that is that. Make it an absolute, and it doesn't matter what anyone else thinks.

Good luck to you.

[nora-n]

I am so sorry they only took one sample, and that the nurse was so utterly ignorant.....Ipersonally would recomend another endoscopy with many more samples, or a video capsule endoscopy (the tell me teh flattened villi and patches of villous atrophy, if they xist, are clearly visible on video capsule endoscopy, and at the same time the whole digestive tract gets checked for everything posssible. There are may many feet they cannot look at if they do only the upper endoscopy and the colonoscopy. One may even have microscopic colitis, which is caused by gluten, but it is not possible to see it, one still needs biopsies to diagnose that.

"celiac cells" ha ha, that is a good one. Never heard that one before, but that was a good one. Maybe the nurse was blond.

You might have pseudo-celiac from Lyme and then the blood tests typically are slightly positive or in the grey zone, and the biopsies are negative. It is supposed to go away after Lyme is successfully treated. I have correspded with someone that has that here close by, he did not know about the connection.

nora

[julirama723]

sbj--I plan on filing an official complaint, as well as contacting the insurance company. I was under the impression that multiple samples would be taken, since the purpose of the endoscopy was to check for celiac sprue. I was even told this by the PA (my fiance came to the appt. with me and remembered him saying this) and by the nursing staff before the procedure.

I've stopped the gluten challenge, I really can't handle doing it again, and I can't afford to buy more clothes! One of my biggest non-GI-specific symptoms when I eat gluten is unexplained weight gain, even if I'm eating the SAME amount of calories as a non-gluten diet. I gained over 10 pounds on the gluten challenge.

You are very right about ruling out lupus and getting the CBC and metabolic panel! (I do have to ask about my thyroid, for even though my TSH tested normal, their reference range is .4-4.0 which is outdated. My TSH was 3.2 which is above the actual normal range set forth by the AACE. The actual normal range is .3-3.0 so I will have to pursue this at my next appointment.)

I wholeheartedly agree with the idea of a CORRECT diagnosis. If procedures are done as they should be, I will have no complaints. But I HATE it when I hold up my end of the bargain (gluten challenge, food diary, spotless procedure prep, etc.) and others do not.

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WW340--you are very right! But what concerns me is that the person I talked to is not a receptionist or secretary, she's a nurse in the procedural wing of the GI's office! Yikes! I guess I thought she would know more than she did.

As for the doctor, I had really high hopes, and believe me, I wanted to like him, I was on his side, I wanted to be completely pleased with the opportunity to have an EGD/colonoscopy. And for the most part, I was, until I spoke with the nurse. I did NOT like his bedside manner, or lack thereof (he came in the room and said very harshly "What are you doing here?" Good lord I felt like a kid in the principal's office.) But I know that some of the most intelligent doctors can be the most abrasive, so I did not let that cloud my perception of the appointment. I will say that he was very good at doing what little I can remember of the procedures. I don't remember much of the EGD, but the colonoscopy didn't hurt one bit.)

As for going gluten-free, I've been gluten-light for a few years. In fact, 2+ years ago, I gave up grains entirely and did not eat them for about 8 or 9 months. Then I was gluten-light from that point on, with intermittent patches of being grain-free. (I always suspected a problem with grains, and would give them up. Then I'd start eating them again and symptoms wouldn't return immediately, so I thought whatever was wrong had been "fixed." Ignorance is bliss! ) I did not start having really serious problems (i.e. symptoms that were making me ill, affecting my work, etc.) until this past year. I've been kind of sub-par health-wise my entire life, and maybe it's just that I didn't notice symptoms until I had been free of them for an extended length? You are correct, it was not an ideal situation to be gluten-free/Gluten-light for so long, but I did the challenge, and hoped to make the best of it.

Are you saying that I need to decide if I'm celiac vs. gluten-intolerant, or I need to go on a gluten-free diet? I am 100% ready, willing, and able to do the gluten-free diet, immediately after the procedure, I ended the challenge and went back to being gluten-free. I do need to figure out a way to ignore the opinions of others, but it is very difficult when I am seen as some militant health-nut by a lot of peers, co-workers, and family. I try not to voice too many opinions because many people I know here in town are wheat farmers or are connected in some way, no joke! I feel like if I had something official, I would be more credible or have more respect.

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Nora--I'm not sure I can get another endoscopy soon enough, and I surely don't want to do another gluten challenge. I might be able to find another doctor, I am seriously considering it. I would have to get a referral from somewhere. I could look into Lyme disease, though I'm not sure I exhibit the symptoms. I certainly never had the rash, though I know that doesn't always appear.

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I do apologize once again for not being clear in differentiating between the PA and the GI doctor. I didn't want to be too specific, because the area where I live is small, everybody knows everybody, and you never know who's looking. There are only a handful of GIs within a 200-mile radius, and I didn't want someone to read my post and say "A-ha, I know exactly who she's talking about!"

Thanks for letting me rant and rave and blow off steam. I was so upset I was almost crying when I got off the phone yesterday. My fiance was very upset when I told him about the biopsy, I think because he sees what happens when I eat this junk (I'm preaching to the choir here, you all know what I am talking about!), and for me to put myself through a gluten challenge only to find the procedure was not done as promised is very frustrating.

I have a follow-up appt. on Thursday with the PA. It should be interesting.

[GFinDC]

Maybe you could do a different test? They have the Biocard home test available in Canada now. It is a $50 blood test you can do at home. Perhaps you can find a doctor in Canada to do the Biocard test for you or sell you the test and you can do it yourself. I don't know if it is legal to bring it into the USA. But it shouldn't be illegal to travel to Canada and get it done there. Just a thought. Your doctor might be able to recommend a Canadian doctor to do the test.

Open Original Shared Link

[Fiddle-Faddle]

Julirama, you have the right to ask for copies of all your records, including the OR records from your procedure, and including the report of the analysis of the tissue sample.

I was told over the phone that my blood work for celiac was negative. when in fact my IgG was through the roof.

Some doctors are idiots, plain and simple.

[julirama723]

GFinDC--thanks for that info! I'm not sure that test would work though, it seems to test IgA levels? I am IgA deficient.

Fiddle Faddle--yes, you are right. I plan on getting copies of everything. (At my last appt. the PA made copies of everything for me in advance, I didn't even have to ask!) One, because I'm curious and like learning new things, and two, I want to see exactly what's going on.

[Jaimepsalm63]

It stinks that your doc did that to you!!

Here are my two cents though with an official dx. My husband isn't able to get life insurance for me now because of the official dx.

On the flip side, (even with a dx) I have people telling me they don't believe me and think I'm bringing a lot of trouble (when I went on a church retreat in which I was one of the presenters and I told them they could either have me bring my own food or learn to cook gluten free. They chose the latter because we had 2 candidates on the retreat that needed gluten free too. So a dx didn't help in that area either.

Plus side, my really good friends, kids, and wonderful hubby know more about their own health by watching me. Several people in my church have come up to me knowing what I have and have asked me for advice because they have the same "symptoms". They've seen the doc I recommended and sure enough...they also have Celiac.

I'm fortunate to have a GI doc who listens to me. I was suffering with blood in my stool at age 27, several docs said I was too young to have colon problems....he, my awesome doc, did a colonoscopy (against other doctors advice) and I had colon cancer. I tried one of his partners with my Celiac dx (mine was out of the country for a bit) and he told me I couldn't have Celiac because I've only been with my husband and not another man so I didn't catch that STD.....ugh! I stick with my doc now and no one else.

Find a doc that will listen to you and take the time to do what's needed. My doc is now looking into me having lupus, sjogren's, and scleroderma. He found my gastroparesis last year because he listened to me and did the test for that twice knowing what tests are.

Don't give up! If all else fails with your relatives and future relatives....just say you have it, but you can't see the GI doc you currently have and need a new one. If they ask why, just say you had a difference of opinion on how to go about handling it.

Self dx IMO is just as good as the "real deal" and you won't kill yourself ingesting gluten.

Good luck. At least this forum won't think you're a drama queen. If you are then we all are and proud to be that way to protect our lives.

[GFinDC]

GFinDC--thanks for that info! I'm not sure that test would work though, it seems to test IgA levels? I am IgA deficient.

Right you are Julirama, the Biocard checks IGA per their website. Sorry I didn't catch that. I guess it was easy for you to see with your one great big enormous eye vs. my tiny 2 little eyes with coke bottle glasses! Not that' there's anything wrong with that!

Hopefully your doc can figure out some kind of test for you.

[debmidge]

I just got off the phone with the doctor's office and I am LIVID.

I am convinced that in the 2-month span that I've been researching and reading about celiac disease and gluten intolerance, that I know MORE than the so-called professionals at that office.

I received the results from the biopsy today, and they were negative, just as I'd suspected. I did not expect to hear the other information I recieved.

"The doctor only took 1 sample, as your intestines looked normal. Yes this is standard procedure."

"The biopsy came back normal. There were no celiac cells present."

<I thought the biopsy looked for atrophy> "Oh, no, atrophy has to do with muscles when they become weak."

<No, I am referring to vilious atrophy, I thought the biopsy looked for vilious atrophy.> "Oh well, when people have celiac disease, they have a certain look."

<I am VERY upset that only one sample was taken. I was under the impression that NUMEROUS samples, 8-12+ would be taken.> "Everything looked normal. You probably just have a gluten allergy. Maybe try changing things in your diet and eating less gluten?"

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I have come to the conclusion that I will never know if I have celiac disease or not. It seems I got the run-around from this doctor. If I had been told he was only taking one biopsy I would not even have bothered with the test! Even with multiple samples, I knew the surety of receving a positive diagnosis would have been iffy.

It's like he did the test to shut me up, but did a half-assed job with it which isn't fair. I, of course, had no way of knowing how many samples they took until after. And I'm pretty sure that the nurse mentioned "multiple samples" before I was given the pain meds.

So I just needed to get this off my chest. I have no faith in these people anymore. It's one thing if they'd have been precise and followed through and done things as they should have, as well as having KNOWLEDGABLE nurses and support staff. But to have the discussion I did with that nurse, and to hear about what little they did during the procedure, it makes me sick.

All this procedure did was pay for his mortgage payment and utilities this month, I have no peace of mind from this.

So do I give up and join the ranks of the self-diagnosed? I'm never going back to gluten, that is for sure. Do I need to pursue this any more with medical professionals? What do I do now? I'm horrified that I'll end up with some nasty autoimmune problem, all because the doctors didn't care enough about me to give me the time of day.

Thanks for listening...

Dear Juli

Sometimes there's a benefit to not having a formal diagnosis.....for purposes of obtaining health insurance or life insurance. Perhaps it's not a bad thing after all....but you know you should go gluten free and that's all that matters. You live your life without gluten and see if that improves your condition and if somehow you need a formal diagnosis you find a GI who knows celiac and get that formal diagnosis.

D

[debmidge]

Here are my two cents though with an official dx. My husband isn't able to get life insurance for me now because of the official dx.

.

Jaime: Try getting a life quote from MetLife. My husband got a policy and we were upfront with the celiac info. The underwriter actually knew what it was and the agent got a quote. He isn't on the Preferred rates, just the standard rates. At least he has life insurance now.

D.

[lizard00]

As a life insurance side note: I recently got a different plan, AFTER my testing was done. I got the standard rate also, instead of the preferred. But nonetheless, I have insurance. I was totally upfront with them, too. There's no point in lying, they will find out one way or another. Mine is through Jackson.

Sorry to hijack... back the ranting!

[WW340]

Are you saying that I need to decide if I'm celiac vs. gluten-intolerant, or I need to go on a gluten-free diet? I am 100% ready, willing, and able to do the gluten-free diet, immediately after the procedure, I ended the challenge and went back to being gluten-free. I do need to figure out a way to ignore the opinions of others, but it is very difficult when I am seen as some militant health-nut by a lot of peers, co-workers, and family. I try not to voice too many opinions because many people I know here in town are wheat farmers or are connected in some way, no joke! I feel like if I had something official, I would be more credible or have more respect.

It doesn't really matter whether you call yourself gluten intolerant or celiac, it doesn't really make people understand any better. I often call myself gluten intolerant or gluten allergic, because most people don't have a clue about celiac disease. All celiacs are gluten intolerant, so we are all in the same boat, it is just that not all gluten intolerants have celiac yet. The point is, that doesn't matter. No one but me and my doctor have ever seen my blood test results, or biopsy results.

I don't see lactose intolerant people worried about an official diagnosis. Vegans don't have to have a doctors note either. So my point is, make up your mind that you can't have gluten because it makes you sick, and just stick to those guns. Pretty soon, everyone will get it, that you are not going to eat gluten no matter what they say. After a while, this won't even be a topic of discussion.

The main thing is, you cannot be wishy washy about it, or you won't be taken seriously. It will be all or nothing, or you will lose credibility. No more gluten lite, no cheating. Others will only take it as seriously as you do.

With the HIPPA laws, no one, including family members have a right to your medical information. If you need to say your doctor advises this, then say it.

[lizard00]

All celiacs are gluten intolerant, so we are all in the same boat, it is just that not all gluten intolerants have celiac yet.

make up your mind that you can't have gluten because it makes you sick, and just stick to those guns. Pretty soon, everyone will get it, that you are not going to eat gluten no matter what they say. After a while, this won't even be a topic of discussion.

The main thing is, you cannot be wishy washy about it, or you won't be taken seriously. It will be all or nothing, or you will lose credibility. No more gluten lite, no cheating. Others will only take it as seriously as you do.

So very true!

As far as others opinions, put yourself in your peers' position. This is a pretty drastic change, and of course people are going to think you're nuts at first. But, after a while, when they notice that you're not feeling bad anymore, and they see that you truly are resolved to be gluten-free, it really isn't the topic of conversation anymore. I went through that in the beginning, too. But here we are a year later, and people don't even ask anymore. My friend had us to dinner and she went to Whole Foods and bought a gluten-free pie crust so that I could eat the pie.

A few months ago she was the same person who asked me if I was "still following that diet?" As time goes on, it just becomes part of who you are.

[julirama723]

That is good to know. I am anything but wishy-washy--I've been eating the way I've eating (prior to October--no processed foods, grain-free, since October--gluten-free and dairy-free since November) for almost 3 years and people are still constantly giving me grief. So perhaps understanding from these people is right around the corner? Or maybe I just need different family and friends!

[nora-n]

If you have been gluten-light and gluten-free in the past, it is known it is hard to get an official diagnosis afterwards. Time is a factor too, not just eating lots of gluten, it takes different lengths of time for everyone to show the stupid villi damage ("celiac cells") they look for.

Right now they are researching the 3-day test for activated T cells, only celiacs get freshly activated T cells if they go back to eating gluten for three days. One must have been gluten-free for at least a week.

Another different test we do not get is a biopsy where the sample is dipped into gliadin and they watch the immunological changes. Someone who went to Dr. Greene got that test and it showed gluten was the culprit after all. (the person did not get better on the gluten-free diet. This test can be done off gluten too)

Some others get the Enterolab tests and if it shows high fat malabsorption then definitely something is wrong, and they measure antibodies ( IGA) and some other food antibodies. The antibodies hang around for a long time in this kind of test, that is why people already gluten-free can use this test. But it cannot diagnose celiac, and never will, because they have to keep the villi damage standard, because we get money from the government here in some countries in europe if diagnosed, and if they start diagnosing people earlier,like Enterolab, it would cost too much. They have to draw a line somewhere. Some with dramatic symptoms on gluten plus dramatic imptovement off gluten with negative tests get money here. My daughter did get an official diagnosis with negative tests. (funnily they only took two samples, and the pathologist only looked at one of them..)

nora