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lizajane

My Gi Friend Disagrees With My Gi Doc'S Diagnosis, Wwyd?

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Here is the brief history:

my GP did a celiac blood test in aug 2008. negative.

went to a GI in March 2009 and had an endoscopy after vomiting everything i ate for 2 weeks. biopsy was positive for excessive lymphocytes, but did not show damage.

went gluten free and IMMEDIATELY stopped vomiting and felt better (fatigue, constipation, foggy brain) within a week and got better and better.

Doc diagnosed me with celiac and said i MUST be gluten free. MUST. or i could get cancer.

so chatting with my friend- another swim team parent- who happens to be a GI about celiac. my husband starts making all sorts of comments that make me sound a little like i self-diagnosed after doc said i MAY have celiac. (not what happened. doc said i have it.)

so GI friend asks, "did you have this test and this test and this test?" and i said, i had a biopsy. i had 40 lymphocytes/epithelial cell. i went gluten free. i felt better. he said i had celiac. and GI friend says, you need to eat gluten rich for one month, have more extensive blood tests, have another biopsy, do breath tests for lactose and fructose and etc. so i tell him. um, i feel better. why would i do that? why would i torture myself for a month??? why does it matter? and he is determined to convince me that i do not have celiac and that i need more extensive testing.

ugh.

i am convinced that i need to be gluten-free. but my husband is now REALLY getting on my nerves about it.

thoughts?

(edited to add: my GP did the blood test, not my GI. the GI said he would have done more extensive blood testing. but i refused to eat gluten again so he could do it. i stopped throwing up and i didn't want to start again!)

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I am glad you went to the GI you did and not your freind.It might help if you and your husband can sit down together with your GI and talk. It can be hard for our loved ones to accept that we are celiac because it really does impact their lives also. They have to watch out for CC, brush their teeth before a kiss, cut down or out eating out etc. The gluten free lifestyle takes some getting used to and it can be frustrating not just for us but for our loved ones.

It hasn't been long since you have been diagnosed and sometimes once we heal our families are more accepting of the diagnosis. You also have the option of course of doing a gluten challenge for a week when hubby has some vacation time so he can witness for himself what going back to gluten would mean for you. I say a week because for some of us after we have healed a bit it can take a day or two for the reaction to fully set in. You of course stop this challenge when the symptoms return. Of course most of us also get accidently glutened a few times in the beginning so that could also help your DH to understand the need.

You also could call your GI doctor, explain the situation and ask if he would send everything to another doctor that he reccomends, not your freind, for a second opinion. Maybe if you husband hears the same diagnosis from more than one doctor that would help. Your GI friend may be another one that thinks a negative blood test is conclusive proof you don't have it. That thinking almost cost me my life.

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Hello lizajane,

It's been almost a year since you went gluten free. Same here. Since then I've accidentally glutened myself many times (urrgg). The most recent was two weekends in a row with a new brand of rice milk. The website claimed it was gluten free. jerks! My accidents have had one good side effect, my family and friends never doubt my diagnosis. They've seen the rashes and smelled the gas :blink:

Anyhow if you've accidentally glutened yourself then you know how your body reacts to gluten. If you have never had an accidental glutening then either you have superhuman will power or you have to suspect that you are not reacting to gluten. That's the question that would be spinning around in my head.

Hope this helps, RA

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A gluten challenge has health RISKS. (your last experience with gluten was vomitting for 2 weeks, a gluten challenge is one month)

You do not sound as if you need further testing to convince yourself. You can decide the benefit/risk for further testing.

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No offense to your friend who is a GI doc, but from my own experience and the experience on countless posts here and on other boards, there are far too many GI docs like this friend who have no CLUE about celiac disease, gluten intolerance and what torture we live with.

To ask you to eat gluten for a month and have invasive tests is BARBARIC in my opinion. You were vomiting every meal, but that so called "doctor" doesn't care, because all you are is a name, a number, a test and a way to sell some drugs to them. They are so ARROGANT and if you don't fit a "norm" and a cookie cutter, then it must be YOU because of course they are never wrong in their big fat heads.

Sorry my post is full of anger and bitterness. I just can't help myself. I have suffered for 40 years because of those [insert words too impolite to type here.] My OB knew I had celiac and then an idiot GI doc gave me a laundry list of reasons why I could NOT have it. Well it turns out his stupid laundry list were CLASSIC celiac symptoms and again [insert choice adjectives here for what I think of him and his medical degrees.]

I also think it's highly UNPROFESSIONAL and totally inappropriate for some know it all to question your doctor and your diagnosis based on a causal conversation in the bleachers. Unbelievably arrogant and rude IMO. He's SO lucky it wasn't me he said that to because he would have had such an earful I think he would be hiding under his bed for a month.

Again forgive me for the bitterness but seriously this has GOT TO STOP. Americans are suffering terribly and these arrogant doctors are impeding our healing. That is not medicine.

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Oh and I LOVE it when people on here who were "lucky" enough to get classic positives on blood and biopsies tell others that they also need to do so. Testing for celiac is like gambling in Vegas. Save your money for the slot machines and find yourself a gluten free casino because you probably have better odds that way.

Don't gamble with your health. Stay gluten free and accept the diagnosis you have unless the diet doesn't work for you, which you already said it has done wonders. You have been diagnosed. By a doctor. Period. NOBODY should question that except YOU. It's your body, your health and your life.

Hey, I'm feeling feisty today. Tell that guy to give me a call. I'm frustrated and would love to take it out on him. :lol::lol::lol::P

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I agree with everyone. I am VERY grateful that my doc didn't even ask me to go on a gluten challenge after I told her how much better I was feeling. It sounds like you were just as lucky to find your GI doc. I feel sorry for your friend's patients.

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Wow. Why is this disease so difficult? Even the people who get diagnosed don't get any peace! What do you do if you are like me and no one even wants to try and diagnose you? I went off gluten on my own (after being told by 3 different doctors that I had IBS and just need to eat more fiber). After going off gluten dairy started making me sick. Now I am better (not completely, but better). When I told my doc this he said, well if it makes you sick, don't eat it. But he told me he doesn't think I have Celiac because I don't have the symptoms. I guess thats all I'm going to get, and it bothers me.

Oh, and I was curious, what are the classic Celiac symptoms? I see people mention the "classic" symptoms and I was curious.

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Wow. Why is this disease so difficult? Even the people who get diagnosed don't get any peace! What do you do if you are like me and no one even wants to try and diagnose you? I went off gluten on my own (after being told by 3 different doctors that I had IBS and just need to eat more fiber). After going off gluten dairy started making me sick. Now I am better (not completely, but better). When I told my doc this he said, well if it makes you sick, don't eat it. But he told me he doesn't think I have Celiac because I don't have the symptoms. I guess thats all I'm going to get, and it bothers me.

Oh, and I was curious, what are the classic Celiac symptoms? I see people mention the "classic" symptoms and I was curious.

There are over 200 symptoms associated with celiac. Here is a link to the main pages article on them.

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

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Here is the brief history:

my GP did a celiac blood test in aug 2008. negative.

went to a GI in March 2009 and had an endoscopy after vomiting everything i ate for 2 weeks. biopsy was positive for excessive lymphocytes, but did not show damage.

went gluten free and IMMEDIATELY stopped vomiting and felt better (fatigue, constipation, foggy brain) within a week and got better and better.

Doc diagnosed me with celiac and said i MUST be gluten free. MUST. or i could get cancer.

so chatting with my friend- another swim team parent- who happens to be a GI about celiac. my husband starts making all sorts of comments that make me sound a little like i self-diagnosed after doc said i MAY have celiac. (not what happened. doc said i have it.)

so GI friend asks, "did you have this test and this test and this test?" and i said, i had a biopsy. i had 40 lymphocytes/epithelial cell. i went gluten free. i felt better. he said i had celiac. and GI friend says, you need to eat gluten rich for one month, have more extensive blood tests, have another biopsy, do breath tests for lactose and fructose and etc. so i tell him. um, i feel better. why would i do that? why would i torture myself for a month??? why does it matter? and he is determined to convince me that i do not have celiac and that i need more extensive testing.

ugh.

i am convinced that i need to be gluten-free. but my husband is now REALLY getting on my nerves about it.

thoughts?

(edited to add: my GP did the blood test, not my GI. the GI said he would have done more extensive blood testing. but i refused to eat gluten again so he could do it. i stopped throwing up and i didn't want to start again!)

__________________

thoughts ?

Do you have to interact with this idiot on a social basis anymore ? GI "friend" is not a friend. GI acquaintance is merely trolling the poolside for new victims.

I would sit down and have, as others suggested, a heart to heart talk with your spouse, and tell him if he ever undercuts you again in public like that, he was going to find his belongings placed in trash bags and thrown out in the front yard.

That may sound harsh, but deliberately making somebody very ill for a month (actually, it would be for over a month, because it's not likely that you'd get timely appointments) just to pad their bottom line, by running useless tests, given your previous tests and positive response to diet, and then having one's SPOUSE going along with it, qualifies for some sort of seriously warped behavior award, which requires the intended victim to stand up immediately and put a stop to it and furthermore warn that it is not to happen again.

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There are so many layers in your post, that I keep getting mad about things when I walk away and think about it.

Does your husband realize the dangers of this disease and the bad things that can happen to you? Why in the world would he not want you better?

My husband was overjoyed about my diagnosis to have answers after all my suffering and mine is based ONLY on blood tests and dietary response. I refuse to eat gluten and make myself sick for a biopsy and he said no way was he going to let some idiot doctor make his wife suffer like that.

The first 2 weeks on the diet I was very sick and having dizzy spells. My husband drove me all over to the stores I needed and made sure I got the foods I needed to succeed. He has been there for me during all of the grief process and crying spells. He has also worked all day long, driven in hellacious traffic home for 1 to 2 hours, and then taken care of our kids at night so I can go lay down and rest or even take a jacuzzi bath to feel better every single night that I needed him to do that. He also talked to friends at work about it and asked if anyone had any resources of info for me.

Tonight I was too exhausted to cook dinner so after 1 1/2 hours in traffic, he got right back in his car and drove 15 minutes each way to get take out food that he knows is safe for me to eat.

Your husband should be your MOST supportive person during this and he should take it very seriously. I really do not understand his behavior at all. I think he needs to take some lessons. Feel free to show him this post. My husband read this thread and was just shocked that any man would rather see his wife vomit everything she eats than support her 100% in a dietary change that can save her life.

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I have one of those husbands who is entirely NOT supportive in the least. He wouldn't believe me that after I had gone gluten free that the food HE wanted me to eat was making me sick. So I caved and did a gluten challenge for 6 weeks, had the blood tests, continued with gluten for 2 more weeks, and had the endoscopy.

Both tests came up positive for Celiac Disease. He STILL refuses to clean up after himself, like wipe the counter after he makes bread,(he actually said to me "you're the one with the disease, YOU clean up) and continues to order in pizza and etc etc etc. Which is fine. It's his house, I can't exactly toss his stuff out to the curb, but I can certainly pack up mine and go.

Believe me, I can empathise!

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I have one of those husbands who is entirely NOT supportive in the least. He wouldn't believe me that after I had gone gluten free that the food HE wanted me to eat was making me sick. So I caved and did a gluten challenge for 6 weeks, had the blood tests, continued with gluten for 2 more weeks, and had the endoscopy.

Both tests came up positive for Celiac Disease. He STILL refuses to clean up after himself, like wipe the counter after he makes bread,(he actually said to me "you're the one with the disease, YOU clean up) and continues to order in pizza and etc etc etc. Which is fine. It's his house, I can't exactly toss his stuff out to the curb, but I can certainly pack up mine and go.

Believe me, I can empathise!

My first husband was like that. I'll never understand it. HUGS to you.

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I have one of those husbands who is entirely NOT supportive in the least. He wouldn't believe me that after I had gone gluten free that the food HE wanted me to eat was making me sick. So I caved and did a gluten challenge for 6 weeks, had the blood tests, continued with gluten for 2 more weeks, and had the endoscopy.

Both tests came up positive for Celiac Disease. He STILL refuses to clean up after himself, like wipe the counter after he makes bread,(he actually said to me "you're the one with the disease, YOU clean up) and continues to order in pizza and etc etc etc. Which is fine. It's his house, I can't exactly toss his stuff out to the curb, but I can certainly pack up mine and go.

Believe me, I can empathise!

If he is your husband it IS your house too and you have a right to live safely in it. What he is doing is abuse IMHO. Give him a bit to get used to it and if he is still risking your health and well being well IMHO contacting a lawyer and starting the process of freeing yourself might be something to look into. Is he your partner in life or are you a maid he hired to clean up after him? If he doesn't care enough about you to want you to be healthy it is his belongings that need to go to the curb, not yours. You have rights, stand up for them. I know easier said than done.

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No, it's definitely His house. He inherited it from his parents when they died. His entire family, have made it quite clear it will never be mine. I just live here.

Plus, I moved from Canada to the US to be with him. When I leave, I'm going home to my own family.

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No, it's definitely His house. He inherited it from his parents when they died. His entire family, have made it quite clear it will never be mine. I just live here.

Plus, I moved from Canada to the US to be with him. When I leave, I'm going home to my own family.

Well hopefully he will come around and that will never happen. But if it does it is good you have a family to help you through it. Sometimes after we heal and our loved ones see the dramatic effect things like CC can cause they come around. Meantime all you can do is be as careful as you can. Some of us in mixed houses have gone as far as to put a dedicated cutting board, toaster and a couple pans onto seperate shelves or even bins to insure that they stay uncontaminated and that has worked well for them.

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If you have the money(about $450), one test will make it more plausible that you have celiac disease, and doesn't require you to go on a gluten challenge.

There is a genetic test by Prometheus that can tell if you have the gene for Celiac Disease. If you have the gene, then with your symptoms, it would seem to me that people will get off your back.

But if you DON'T have the gene, then maybe something else IS messing with you. Like, say, Crohn's (sp?) disease, which can also cause gut symptoms, and often has certain foods that trigger the response.

Here is the brief history:

my GP did a celiac blood test in aug 2008. negative.

went to a GI in March 2009 and had an endoscopy after vomiting everything i ate for 2 weeks. biopsy was positive for excessive lymphocytes, but did not show damage.

went gluten free and IMMEDIATELY stopped vomiting and felt better (fatigue, constipation, foggy brain) within a week and got better and better.

Doc diagnosed me with celiac and said i MUST be gluten free. MUST. or i could get cancer.

so chatting with my friend- another swim team parent- who happens to be a GI about celiac. my husband starts making all sorts of comments that make me sound a little like i self-diagnosed after doc said i MAY have celiac. (not what happened. doc said i have it.)

so GI friend asks, "did you have this test and this test and this test?" and i said, i had a biopsy. i had 40 lymphocytes/epithelial cell. i went gluten free. i felt better. he said i had celiac. and GI friend says, you need to eat gluten rich for one month, have more extensive blood tests, have another biopsy, do breath tests for lactose and fructose and etc. so i tell him. um, i feel better. why would i do that? why would i torture myself for a month??? why does it matter? and he is determined to convince me that i do not have celiac and that i need more extensive testing.

ugh.

i am convinced that i need to be gluten-free. but my husband is now REALLY getting on my nerves about it.

thoughts?

(edited to add: my GP did the blood test, not my GI. the GI said he would have done more extensive blood testing. but i refused to eat gluten again so he could do it. i stopped throwing up and i didn't want to start again!)

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If you have the money(about $450), one test will make it more plausible that you have celiac disease, and doesn't require you to go on a gluten challenge.

There is a genetic test by Prometheus that can tell if you have the gene for Celiac Disease. If you have the gene, then with your symptoms, it would seem to me that people will get off your back.

But if you DON'T have the gene, then maybe something else IS messing with you. Like, say, Crohn's (sp?) disease, which can also cause gut symptoms, and often has certain foods that trigger the response.

The genetic tests can not absolutely rule celiac out. Many times companies only check for DQ2 or DQ8 and don't test for the other 7 celiac associated genes. I am really, really thankful that I didn't have gene testing done till after I was firmly diagnosed. I would have been told there was no chance I could be celiac as I don't carry one of those 2 genes. If fact my DD had her diagnosis, by biopsy and blood, recinded when she went to college and had her genes tested. If course she is now back on a regular diet and all her symptoms which have returned are attributed to 'stress'. As her Mom there is nothing I can do about it but worry and hope when things get bad enough she will go back to the diet.

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I am glad you went to the GI you did and not your freind.It might help if you and your husband can sit down together with your GI and talk. It can be hard for our loved ones to accept that we are celiac because it really does impact their lives also. They have to watch out for CC, brush their teeth before a kiss, cut down or out eating out etc. The gluten free lifestyle takes some getting used to and it can be frustrating not just for us but for our loved ones.

It hasn't been long since you have been diagnosed and sometimes once we heal our families are more accepting of the diagnosis. You also have the option of course of doing a gluten challenge for a week when hubby has some vacation time so he can witness for himself what going back to gluten would mean for you. I say a week because for some of us after we have healed a bit it can take a day or two for the reaction to fully set in. You of course stop this challenge when the symptoms return. Of course most of us also get accidently glutened a few times in the beginning so that could also help your DH to understand the need.

You also could call your GI doctor, explain the situation and ask if he would send everything to another doctor that he reccomends, not your freind, for a second opinion. Maybe if you husband hears the same diagnosis from more than one doctor that would help. Your GI friend may be another one that thinks a negative blood test is conclusive proof you don't have it. That thinking almost cost me my life.

My husband is very, very supportive of the diet and lifestyle. he is totally on board with how to be gluten free. it is the science that sends him into a panic. if a scientist- a doctor- says that the data isn't complete, he jumps on board. he wants hard facts. he wants to know exactly how much gluten one would have to have before becoming symptomatic, including the serious long term effects. his line of thinking is, "it is 70 degrees, so you can't be cold." um, yes, i can. i can be cold whenever i FEEL COLD. he isn't a jerk. he just wants FACTS and not "this works for me."

so my doc said this plus this plus this means celiac. but the other doc thinks i MUST HAVE THIS AND THIS. so my husband believes him and thinks i need those tests if i REALLY want to know. he wouldn't make me take them and he knows i was SO sick for years and am SO much better. but it really, really bothers him that he doesn't have every single piece of scientific data.

our home is gluten free, except for 4 thins- box of crackers, loaf of bread (when i remember to buy them!), beer and kashi cereal. i don't care about beer, i prefer wine anyway. and he is very careful not to kiss me when drinking beer or eating crackers. he tends to take take the bread to work and eats crackers in the evening in a bowl. all sandwiches are made on a plate and i have a separate toaster. if he puts something in the toaster oven (his) for me or my gluten-free kids, he puts it on a gluten-free baking tray or on foil. all of our family cooking is gluten-free and we only dine out at places wtih gluten-free menus or very professional chefs who can handle it. so really, diet support is better than most and nearly perfect. (i don't care about the 4 items he has in the house because he always puts them on dishes.) also, his father has celiac, so he had already learned a lot about it before my dx.

i have been accidental glutened plenty of times! but my main symptom, the one that destroyed me for 4 1/2 years, is fatigue. when i get glutened, it is like i took nyquil in the morning. i am so tired, can't think straight, can't function. this happened for 4 years!! and my trigger was my second pregnancy. so imagine taking nyquil every single day while staying home with a newborn and a 2 year old until they were 4 and 6. my husband didn't believe that i had a medical problem because NO ONE did. except, ironically, my psychatrist, who was pleased to have the information about celiac to use in her work with future tired patients. it was 4 1/2 years of sheer hell. i kept saying something was wrong with me, and he, my best friend and my doctors kept saying i had a mental heath problem and wasn't willing to be honest with myself. it was HELL HELL HELL.

so speaking of classic symptoms, i am the polar opposite. no chronic stomach aches, no weight loss... i gained 30lbs.i had chronic constipation. i was so, so tired. my brain didn't work right. my doc said i was only his second celiac patient with weight gain and constipation.

anyway. i am babbling my whole story. i was just so annoyed. this guy had my husband convinced to test both my kids by putting them back on gluten, in spite of the fact that we have seen what a terror my 5 year old is when he gets it. stubborn, screaming, arguing, miserable, waking up 4 times a night... TERROR! so i asked his ped, a former ped GI, who said, "why would you do that? if it is working, don't fix it." so we get to leave him alone. and me alone. and i will just have to walk away if GI dad brings it up again.

but i sure do wish my husband would "get it" that saying things like, "well, then, let's go home and order a pizza" is NOT (*&^@#&^#@ FUNNY!!!!!!

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My husband is very, very supportive of the diet and lifestyle. he is totally on board with how to be gluten free. it is the science that sends him into a panic. if a scientist- a doctor- says that the data isn't complete, he jumps on board. he wants hard facts. he wants to know exactly how much gluten one would have to have before becoming symptomatic, including the serious long term effects. his line of thinking is, "it is 70 degrees, so you can't be cold." um, yes, i can. i can be cold whenever i FEEL COLD. he isn't a jerk. he just wants FACTS and not "this works for me."

so my doc said this plus this plus this means celiac. but the other doc thinks i MUST HAVE THIS AND THIS. so my husband believes him and thinks i need those tests if i REALLY want to know. he wouldn't make me take them and he knows i was SO sick for years and am SO much better. but it really, really bothers him that he doesn't have every single piece of scientific data.

our home is gluten free, except for 4 thins- box of crackers, loaf of bread (when i remember to buy them!), beer and kashi cereal. i don't care about beer, i prefer wine anyway. and he is very careful not to kiss me when drinking beer or eating crackers. he tends to take take the bread to work and eats crackers in the evening in a bowl. all sandwiches are made on a plate and i have a separate toaster. if he puts something in the toaster oven (his) for me or my gluten-free kids, he puts it on a gluten-free baking tray or on foil. all of our family cooking is gluten-free and we only dine out at places wtih gluten-free menus or very professional chefs who can handle it. so really, diet support is better than most and nearly perfect. (i don't care about the 4 items he has in the house because he always puts them on dishes.) also, his father has celiac, so he had already learned a lot about it before my dx.

i have been accidental glutened plenty of times! but my main symptom, the one that destroyed me for 4 1/2 years, is fatigue. when i get glutened, it is like i took nyquil in the morning. i am so tired, can't think straight, can't function. this happened for 4 years!! and my trigger was my second pregnancy. so imagine taking nyquil every single day while staying home with a newborn and a 2 year old until they were 4 and 6. my husband didn't believe that i had a medical problem because NO ONE did. except, ironically, my psychatrist, who was pleased to have the information about celiac to use in her work with future tired patients. it was 4 1/2 years of sheer hell. i kept saying something was wrong with me, and he, my best friend and my doctors kept saying i had a mental heath problem and wasn't willing to be honest with myself. it was HELL HELL HELL.

so speaking of classic symptoms, i am the polar opposite. no chronic stomach aches, no weight loss... i gained 30lbs.i had chronic constipation. i was so, so tired. my brain didn't work right. my doc said i was only his second celiac patient with weight gain and constipation.

anyway. i am babbling my whole story. i was just so annoyed. this guy had my husband convinced to test both my kids by putting them back on gluten, in spite of the fact that we have seen what a terror my 5 year old is when he gets it. stubborn, screaming, arguing, miserable, waking up 4 times a night... TERROR! so i asked his ped, a former ped GI, who said, "why would you do that? if it is working, don't fix it." so we get to leave him alone. and me alone. and i will just have to walk away if GI dad brings it up again.

but i sure do wish my husband would "get it" that saying things like, "well, then, let's go home and order a pizza" is NOT (*&^@#&^#@ FUNNY!!!!!!

It sounds like you have a great hubby there. Hopefully you won't run into the GI freind too often. You also seem to have lucked out with the Ped. A wise one there who has the best interests of your son in mind.

Talk to your husband about the 'jokes' and let him know they hurt your feelings. Maybe make a firm rule that every time he jokes about ordering a pizza he gets to make one at home for the family while you have some down time. :D

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Thank you for that information. I was not aware of that, and it was a test I was thinking of getting for my son when he's older. He's negative for celiac, but he does better without gluten, so we went gluten free anyway. A good thing to know to look out for if he's tested later on!

I wish you luck that your daughter goes back on the diet again soon.

The genetic tests can not absolutely rule celiac out. Many times companies only check for DQ2 or DQ8 and don't test for the other 7 celiac associated genes. I am really, really thankful that I didn't have gene testing done till after I was firmly diagnosed. I would have been told there was no chance I could be celiac as I don't carry one of those 2 genes. If fact my DD had her diagnosis, by biopsy and blood, recinded when she went to college and had her genes tested. If course she is now back on a regular diet and all her symptoms which have returned are attributed to 'stress'. As her Mom there is nothing I can do about it but worry and hope when things get bad enough she will go back to the diet.

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