How Do I Approach My Doctor About The Possibility Of celiac disease?

[jester]

Here's my story.

Growing up I was 'sickly', had lactose intolerance even as a baby. I'm not even 5' tall and while my mother is short my TWIN SISTER is a couple inches taller than her, so we joke that I had stunted growth from being so sick all the time.

In school I was absent a lot for headaches/migraines and also upset stomach. I'm high-strung so it was generally attributed to nerves.

These days I've accepted I just 'have a bad digestive system' because I'm constantly uncomfortable after eating.

So Monday was Celiac Awareness Day and a friend of mine posts on a blog how she has it, we get to talking and she says, you sound exactly like me before my diagnosis; you should get tested. I'm aware of celiac disease but I always thought it was only people with sudden weight loss and horrific pain who can't eat anything and have bad diarrhea. So I start doing some research...

So besides having chronic discomfort, I also have chronic constipation - despite a high fiber diet. In fact it's been inverse - the more whole grains I eat, the more I've felt heavy and blocked. I went vegetarian about a year ago and felt the best I ever felt; I was eating mostly fruits and veggies and good food. But in the past nine months I've slipped into an easy high-carb high-processed diet and I feel worse than ever. I can't stop eating; I'm always hungry and I've eaten until I've thrown up a couple times now. I constantly feel sick - full, bloated, heavy. Tired. In recent months I've gotten 8-10 hours of sleep and still feel tired, assumed I was just sleeping too much and it was cyclical. I have headaches all the time; I've developed an embarrassing flatulence problem, and have been suffering from irritated depression - a lot of it frustration with feeling bad all the time, with the weight gain from the appetite increase meaning I don't fit in my clothes so I feel worse...

I've been told I have GERD, but prescription antacids don't help. (And yes I do have horrible refluk - acid shooting all the way up my throat into my nose sometimes)

I've been told it's all in my head or it's just stress, but I've missed school and work because I feel so ill.

... my friend telling me to get checked was like something breaking inside. That I don't HAVE to feel this way, that this isn't normal. I've never considered any of my symptoms 'that bad', partly why I've never pursued an explanation more earnestly, but the past few months I've been miserable.

My MIL is a retired nurse so I'm waiting to hear back from her with a specialist recommendation and then I'm making an appointment.

So... what do I say when I go in? I think I might have celiac disease, please test me? I don't want to cry wolf; I don't want to create a huge stink if it's really nothing; I've 'gotten used to it' and have been sick on and off so much I have a somewhat hypochondriac reputation (who wouldn't when they feel sick all the time?). I can't be certain without the tests; it might not be celiac disease. I do have lactose intolerance but it was previously mild, I could have cheese and ice cream, so maybe it's just getting worse and I'll need to cut all dairy?

What do I say?

[Jestgar]

So... what do I say when I go in? I think I might have celiac disease, please test me?

What do I say?

I called my doctor and said "Will you order a Celiac test for me?" Her office called back and said "The order's in the lab, go in any time."

[Skylark]

Welcome. You sure do sound celiac. I'd try "Hi, Doc. I think I might have celiac disease. Here are my symptoms. Would you please test me for celiac along with anything else that might explain all this?"

By the way, there are people who are not celiac but get very sick from gluten anyway and the tests are also inaccurate. Once you've had all the testing done (including biopsy if it's necessary) give the diet a good, strict try.

[jester]

Thanks.

Jestgar, it was really that easy? I've sort of been steeling myself against what sounds like the general ignorance and resilience of the American medical system.

I don't know that my doctor would do that without me coming in; the receptionist is really snotty about process. Should I try that? I mean, if it isn't celiac disease I'd probably need to see one anyway, right? I would insist on a specialist and not my PCP - he's of the listen with half an ear and write out a script sort.

I'm kind of afraid to hope at this point. Sometimes I feel so sick I hate food so much and don't want to eat anything but then I can't stop and feel even worse afterward.

When I went veggie I had enough trouble trying to get my family adjusted, I don't know that I could try gluten-free without some sort of diagnosis - if it's negative and I say I want to go gluten-free anyway I can just hear comments about how I'm being melodramatic or a hypochondriac or difficult, though hopefully I'm wrong.

(I also read up on IBS and am positive it's not that, which is apparently the most common misdiagnosis? movements don't relieve symptoms at all.)

[Jestgar]

A phone call is easy to try. My opinion is that I hired my doctor, and I can fire her. Had she said no, I would have expected her to explain her reasoning.

[Ahorsesoul]

My advice is to see a doctor who is a specialist in Celiac Disease. It really takes a specialist to diagnosis and to do the proper testing. Do not start eating gluten free before you have testing done. Look under the Doctor section here to see if there is a doctor in your area that is recommended. Or post your request there with the name of your town or the closest large town to you as the subject/topic to see if someone knows a doctor in your area.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

[lilgooberluvsya]

Here's my story.

Growing up I was 'sickly', had lactose intolerance even as a baby. I'm not even 5' tall and while my mother is short my TWIN SISTER is a couple inches taller than her, so we joke that I had stunted growth from being so sick all the time.

In school I was absent a lot for headaches/migraines and also upset stomach. I'm high-strung so it was generally attributed to nerves.

These days I've accepted I just 'have a bad digestive system' because I'm constantly uncomfortable after eating.

So Monday was Celiac Awareness Day and a friend of mine posts on a blog how she has it, we get to talking and she says, you sound exactly like me before my diagnosis; you should get tested. I'm aware of celiac disease but I always thought it was only people with sudden weight loss and horrific pain who can't eat anything and have bad diarrhea. So I start doing some research...

So besides having chronic discomfort, I also have chronic constipation - despite a high fiber diet. In fact it's been inverse - the more whole grains I eat, the more I've felt heavy and blocked. I went vegetarian about a year ago and felt the best I ever felt; I was eating mostly fruits and veggies and good food. But in the past nine months I've slipped into an easy high-carb high-processed diet and I feel worse than ever. I can't stop eating; I'm always hungry and I've eaten until I've thrown up a couple times now. I constantly feel sick - full, bloated, heavy. Tired. In recent months I've gotten 8-10 hours of sleep and still feel tired, assumed I was just sleeping too much and it was cyclical. I have headaches all the time; I've developed an embarrassing flatulence problem, and have been suffering from irritated depression - a lot of it frustration with feeling bad all the time, with the weight gain from the appetite increase meaning I don't fit in my clothes so I feel worse...

I've been told I have GERD, but prescription antacids don't help. (And yes I do have horrible refluk - acid shooting all the way up my throat into my nose sometimes)

I've been told it's all in my head or it's just stress, but I've missed school and work because I feel so ill.

... my friend telling me to get checked was like something breaking inside. That I don't HAVE to feel this way, that this isn't normal. I've never considered any of my symptoms 'that bad', partly why I've never pursued an explanation more earnestly, but the past few months I've been miserable.

My MIL is a retired nurse so I'm waiting to hear back from her with a specialist recommendation and then I'm making an appointment.

So... what do I say when I go in? I think I might have celiac disease, please test me? I don't want to cry wolf; I don't want to create a huge stink if it's really nothing; I've 'gotten used to it' and have been sick on and off so much I have a somewhat hypochondriac reputation (who wouldn't when they feel sick all the time?). I can't be certain without the tests; it might not be celiac disease. I do have lactose intolerance but it was previously mild, I could have cheese and ice cream, so maybe it's just getting worse and I'll need to cut all dairy?

What do I say?

WOW, you sound exactly like the symptoms I have had, which makes me feel guilty alone for thinking this might be it. I am also new to the boards and posted my stuff recently. Its nice to know i'm not the only one thinking.. "but I don't have weight loss" ( which I would love at this point lol)

My docs office has a place online where we can view our results our next appointments etc. etc.. and recently. .since i don't have insurance and am scared at this point as well to find out the tests are negative and i'm back at the drawing board. .simply sent her an email through the site asking what her thoughts are on it considering the persistance heart burn etc.. and discomfort.. still waiting on a reply

[cassP]

yes! go ask for a test SOON while you're still eating gluten. DONT WORRY about crying wolf... or stating your case- this is YOUR LIFE and YOUR health-

i already knew i had a problem with wheat- some digestive & skin stuff. after a friend told me about it and her BM symptoms- i thought- WOW this is something i need to rule out before i go off wheat again.

so i just asked my PCP on a routine visit. she wanted to run CBC, thyroid, & other stuff... and i simply asked if i could add a Celiac test to that- no problem at all

once it came back partly positive- they referred me to a GI. and on my next visit- my PCP sat me down & wanted to know WHY i thought to ask for one... i found that funny.

anyways, above poster's suggestion to find a doc who understands celiac is a good idea.

dont be worried- and DO IT NOW

[cassP]

ps- and dont feel like you have to fit the mold of a classic celiac to order the test. i mostly suffered from "C" and other things i cant gross you out with(yes, worse than C or D). The "D" mostly came when i would eat dairy (while on a heavy gluten diet).

[T.H.]

I'd second the calling up your General doctor and asking for the celiac blood test panel (as opposed to just a blood test: the panel part is important). If it's positive, then you can go to the specialist, you know?

Some doctors will write you up the prescription for the blood test, some won't, but it can't hurt to ask for it. And you can insist as much as you need to.

I think that's often hard for a lot of us, who have ended up feeling like we should be guilty for feeling bad, or for getting sick. Like we have to justify it just to have someone take it seriously. And we don't. We can say: I want to be tested for this. Period.

And I must say, with all anger intended, the people who are saying that it's just nerves can go get stuffed. If you have all these problems, then something is causing it. Just because the docs can't find it DOESN'T mean it's all in your head. And the self-doubt caused by their blaming the patient for the problem makes me so frustrated on your behalf.

So many of us have been there - self included - and we really know what it's like. You're definitely not alone, hon. And even if it's not celiac disease? You might be helped thinking of things that involve the whole body, like auto-immune diseases. Because something is messing with you, and here's very much hoping that you find out what it is soon so you can start getting healthy again.

[jester]

I think that's often hard for a lot of us, who have ended up feeling like we should be guilty for feeling bad, or for getting sick. Like we have to justify it just to have someone take it seriously. And we don't. We can say: I want to be tested for this. Period.

And I must say, with all anger intended, the people who are saying that it's just nerves can go get stuffed. If you have all these problems, then something is causing it. Just because the docs can't find it DOESN'T mean it's all in your head. And the self-doubt caused by their blaming the patient for the problem makes me so frustrated on your behalf.

So many of us have been there - self included - and we really know what it's like. You're definitely not alone, hon.

Yes! It's just - at least I know in my case - I feel like the doctors would know best, right? So I don't push or question. But that's so not true, especially for something like this.

It's only 6AM (heh) but when the office opens I'll call and ask to have him order a celiac panel - and also is there a blood test for lactose? I do think I should check on how that's doing.

[ravenwoodglass]

Yes! It's just - at least I know in my case - I feel like the doctors would know best, right? So I don't push or question. But that's so not true, especially for something like this.

It's only 6AM (heh) but when the office opens I'll call and ask to have him order a celiac panel - and also is there a blood test for lactose? I do think I should check on how that's doing.

When you call the office if you ask to talk to a nurse sometimes that can be helpful if you think the receptionist isn't going to listen to you. Also if you are not happy with your doctor you do have the right to switch to another. You could also try writing down what is going on and having the doctor read it so you don't end up with 'he only listened to half of what I said' syndrome.

There is a breath test for lactose intolerance, however most of us are lactose intolerant until the celiac reactions are under control. The reason is that the same area that produces the enzyme that digests lactose in dairy is the area that is damaged by celiac. Do stay on gluten until all testing is done and if your doctor will not test ask for a referral to a GI doctor and start looking for a different GP.

[jester]

ARGH.

I finally worked up the courage to call. I ask if the doctor could order tests for me. She asks my name (which I'm sure she recognizes), after a pause she stutters out 'I would make an appointment', and then asks what kind of tests. I start to answer and she cuts me off with a 'be with you shortly' and puts me on hold. comes back minutes later and says they'll have to call me back! All I did was ask if I could get a blood test ordered! And frankly I don't care if you would make an appointment, you're a receptionist not a nurse. I kind of feel like crying. I knew this woman would be difficult about it. (Or am I over-reacting because I'm super emotional right now?)

So hopefully they'll call back soon... though if I don't hear back in a couple hours I think I'll have to call back and be firm. It should've been a simple yes or no question! Short of an office emergency, what is there to call back about? I didn't even get to specify which tests, so it's not like she needs to check on anything.

(My theory is that she's under instructions to tell everyone to make an appointment so they can get the money for the visit, but I'm SURE I'm just being paranoid. >.>)

ETA!

Two and a half hours later, I called them. This is what I got as I said repeatedly, it's a simple yes or no question:

We're short handed. We'll call when we're done; we're nearly done. There's only one person at the desk. We're busy right now.

I finally said okay and hung up.

And tonight I'm talking to the hubs about finding a new doctor. That's the receptionist's standard treatment. She's worse than some of the executive assistants I used to work with who were rabid about keeping everyone away from their bosses. So very unhelpful and off-putting.

In the meantime, I have a appt w/ a specialist on 10/27 and if my PCP hasn't ordered the labs by then, she'll be able to do it after she sees me. Hallelujah.

Also, a couple things I wanted to say last time and forgot:

CassP, YES that's exactly what it's like!

and thank you so much to everyone. It means a lot that you'd listen to a stranger vent.

(Do you ever not have to wait for a mod to approve your post? I'm so impatient! )

[cassP]

they may not be dismissing your request... they may just want you to come in for an appointment so they can bill you. that's how most of my docs are.

keep us posted- on your testing.. good luck

[kareng]

Are you seeing a GI specialist in Oct? Maybe if you call the office tomorrow and ask to speak to the doctors nurse. Tell her your having this appt and need the blood work done to take with you. If they think the new doc wants it done, they might go ahead and order it for you.

[tarnalberry]

Thanks.

Jestgar, it was really that easy? I've sort of been steeling myself against what sounds like the general ignorance and resilience of the American medical system.

I don't know that my doctor would do that without me coming in; the receptionist is really snotty about process. Should I try that? I mean, if it isn't celiac disease I'd probably need to see one anyway, right? I would insist on a specialist and not my PCP - he's of the listen with half an ear and write out a script sort.

I'm kind of afraid to hope at this point. Sometimes I feel so sick I hate food so much and don't want to eat anything but then I can't stop and feel even worse afterward.

When I went veggie I had enough trouble trying to get my family adjusted, I don't know that I could try gluten-free without some sort of diagnosis - if it's negative and I say I want to go gluten-free anyway I can just hear comments about how I'm being melodramatic or a hypochondriac or difficult, though hopefully I'm wrong.

(I also read up on IBS and am positive it's not that, which is apparently the most common misdiagnosis? movements don't relieve symptoms at all.)

1) don't ask the receptionist for the test, ask to leave a message for the doctor. the receptionist is not the medical professional here.

2) while it's very nice to have, you don't need your family's support, since it's entirely under your control what you put in your mouth. it can be a "topic not up for conversation" if necessary. (but I hope that isn't necessary)

[ravenwoodglass]

Are you seeing a GI specialist in Oct? Maybe if you call the office tomorrow and ask to speak to the doctors nurse. Tell her your having this appt and need the blood work done to take with you. If they think the new doc wants it done, they might go ahead and order it for you.

That is exactly what I would recommend. I would say to the nurse "I strongly suspect I have celiac and I am suffering greatly. Please can we do the blood test so we have the results at my visit. Also if you have any cancelations can you put me on the list so I can get in sooner."

[jester]

That is exactly what I would recommend. I would say to the nurse "I strongly suspect I have celiac and I am suffering greatly. Please can we do the blood test so we have the results at my visit. Also if you have any cancelations can you put me on the list so I can get in sooner."

I did try asking to speak to the nurse at my PCP's but all I get is she's busy, make an appointment. The GI won't order them because she's never seen me before. The GI is mailing me the new patient paperwork to fill out before my appointment, though, so once they get that back she might be able to.

In the meantime, today I'm PCP-shopping. I think I know where I'd like to go, too, so I'm going to call them first. My hubs was really good about it, was offended on my behalf that they're so rude.

He also said if I have to wait that long - late Oct - for the tests why don't I try eating gluten-free now to see if I feel better! He was really supportive - since it is my health here, not just a choice like going veggie was. I did explain to him that I can't try gluten-free till I have the tests and since I don't know exactly when they'll be, if I can get them sooner, and he understood, but that was a good encouragement.

This past week has been particularly bad - horrible acid, weakness. Ugh. I know the heartburn is sparked by having a piece of hot sausage by accident on Tuesday night - if I have meat now I get sick since it's been so long! - so I'm really hoping to get something sooner.

ETA:

The new office was super nice. They fit me in to meet the doctor and get a preliminary exam (since I said I was sick a lot) for next Friday morning, and we'll take it from there assuming we click. They were able to answer my questions on the phone and didn't rush me - I mean, I actually COULD ask questions! When the receptionist was taking my information and I said my birth date is Sep 18, she even noticed to say happy birthday. A small thing, but it beats being cut off every time you try to say something.

[ravenwoodglass]

I did try asking to speak to the nurse at my PCP's but all I get is she's busy, make an appointment. The GI won't order them because she's never seen me before. The GI is mailing me the new patient paperwork to fill out before my appointment, though, so once they get that back she might be able to.

In the meantime, today I'm PCP-shopping. I think I know where I'd like to go, too, so I'm going to call them first. My hubs was really good about it, was offended on my behalf that they're so rude.

He also said if I have to wait that long - late Oct - for the tests why don't I try eating gluten-free now to see if I feel better! He was really supportive - since it is my health here, not just a choice like going veggie was. I did explain to him that I can't try gluten-free till I have the tests and since I don't know exactly when they'll be, if I can get them sooner, and he understood, but that was a good encouragement.

This past week has been particularly bad - horrible acid, weakness. Ugh. I know the heartburn is sparked by having a piece of hot sausage by accident on Tuesday night - if I have meat now I get sick since it's been so long! - so I'm really hoping to get something sooner.

ETA:

The new office was super nice. They fit me in to meet the doctor and get a preliminary exam (since I said I was sick a lot) for next Friday morning, and we'll take it from there assuming we click. They were able to answer my questions on the phone and didn't rush me - I mean, I actually COULD ask questions! When the receptionist was taking my information and I said my birth date is Sep 18, she even noticed to say happy birthday. A small thing, but it beats being cut off every time you try to say something.

It sounds like things will go much better with the new doctor. Do ask him to do the blood work so the GI can have it when you get there.

It sounds like your DH is really supportive, that helps a great deal. If after you see the GI and it's time for your trial of the gluten-free diet if you can make the house gluten-free at least until your healed that helps and it sounds like hubby might be on board with that.

Let me wish you an early Happy birthday and I hope you have a great day tommorrow.

[mushroom]

(Do you ever not have to wait for a mod to approve your post? I'm so impatient! )

Yes, yes, try to be patient - it won't be long now. Think of it as a probationary period on a new job. Mods approve the posts initially because we are weeding out the spammers to make your board a more friendly place.

[jester]

Thanks, mushroom, I just wondered how long it took - I haven't really posted on other threads because of it (and not being diagnosed yet I don't have much to add....)

Thanks for the birthday wishes.

I'll let everyone know how it goes next week. I've been paying attention to how I feel more after I eat and I had corn tortilla chips and felt okay and an orange and felt okay, a sandwich and felt ick, but I wonder if I'm not projecting at this point, you know?

[enolah]

I'm glad you have an appointment upcoming with a specialist and I hope it goes well! I can relate to the frustration in wanting answers. We are currently waiting for my daughter's endscopy which is scheduled for the end of Oct.

It sounds like you doing a good thing to find a new primary care doctor after the way you were treated and didn't have phone calls returned.

I do want to throw it out there, however, that IMO, it may not always be appropriate for a doctor to order tests on a patient at his/her requests without an office visit and complete examination first. As busy as my doctor's office is, I'm sure that on some days they would prefer to practice "drive up window" medicine for time's sake, but I don't think that's good care. I'm glad that they want to see me first, get the whole story and examine me before deciding with me what the best tests would be.

[jester]

I do want to throw it out there, however, that IMO, it may not always be appropriate for a doctor to order tests on a patient at his/her requests without an office visit and complete examination first. As busy as my doctor's office is, I'm sure that on some days they would prefer to practice "drive up window" medicine for time's sake, but I don't think that's good care. I'm glad that they want to see me first, get the whole story and examine me before deciding with me what the best tests would be.

Of course. It may not be clear from my ranting but my problem is not in them refusing the test. It's in the lack of listening to anything I said, the not returning my calls, the not letting me speak to a nurse, and the fact that this is standard operating procedure. Changing doctors just because they don't ask how high when you say jump would indicate a bit of an ego problem. Changing doctors because you want someone who treats you with respect, not so much. If anyone had listened to my concerns and said, we'd be happy to see about ordering the test if you'd come in and let us check on things, I'd have been fine with that. Getting cut-off mid-sentence and then hung up on? NEVER OKAY from a professional.

[Jestgar]

Changing doctors because you want someone who treats you with respect, ....

Extraordinarily important. And well worth the effort. I hope you find someone that suits you.

[TerryBobElvisRoyale]

My advice is to see a doctor who is a specialist in Celiac Disease. It really takes a specialist to diagnosis and to do the proper testing.

Do not start eating gluten free before you have testing done.

What if I have already been gluten free [as far as I know] for a week before my Doctors Appointment?

Look under the Doctor section here to see if there is a doctor in your area that is recommended. Or post your request there with the name of your town or the closest large town to you as the subject/topic to see if someone knows a doctor in your area.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/