I Feel Like I'm Going Crazy

[Ryniev]

I went on a gluten free diet for several months because my "IBS" was getting so bad plus I have other symtoms (joint pain, depression, rashes) and within days (literally) my stomach cleared up to the point that I rarely even passed gas (from having constant diarhea and bouts of unbelievable gas).

I then decided that I needed an "official" diagnosis so I went went back on gluten for about a month and well, the results have been terrible. I'm a mess. So I finally had an appt with my internist today and wrote down all my symptoms to go over with her. I asked her to please give me a blood test for celiac. She said no, there was no reason to because I haven't lost a great deal of weight and didn't have the "symptoms". I said "what are you talking about, I have chronic diarhea and gas" and she did the whole, "well it's really rare and I don't think you need to be tested" I finally lied and said, "well my dad had it" and she replied "well, it's not heriditary". She wanted to test me for thyroid, RA, Lupus and everything else under the sun. I've been tested for a thyroid disorder 4 times and it's always come back negative.

Anyway, she finally relented and ordered the darn test but also insisted I take 2 prescriptions for anti-depressants 1 for morning and 1 for night because it would help with my "IBS". I told her that anti-depressants made my stomach worse, not better and she just wouldn't believe me. She then told me two things:

1. I shouldn't be eating a lot of wheat with IBS in the first place and

2. If I did have celiac, the only thing I could do was "cut back" on gluten and there was no medicine for it anyway, so I really didn't want it.

The woman had me so stressed out that my blood pressure spiked to 130/90 and it's normally about 107/72 (I check about every 2 weeks). Now she wants me to monitor my blood pressure ARRRRRRRGGGGGGHHHHHHH!!!!

Anyway, I got the test but I've been a mess all day because she treated me like I was so stupid. Obviously, I need a new doctor but I haven't found one yet that will actually listen to me when I have a problem, so I rarely even bother to go anymore.

I just want to cry.

[Guest Doll]

I went on a gluten free diet for several months because my "IBS" was getting so bad plus I have other symptoms (joint pain, depression, rashes) and within days (literally) my stomach cleared up to the point that I rarely even passed gas (from having constant diarhea and bouts of unbelievable gas).

I then decided that I needed an "official" diagnosis so I went went back on gluten for about a month and well, the results have been terrible. I'm a mess. So I finally had an appt with my internist today and wrote down all my symptoms to go over with her. I asked her to please give me a blood test for celiac. She said no, there was no reason to because I haven't lost a great deal of weight and didn't have the "symptoms". I said "what are you talking about, I have chronic diarhea and gas" and she did the whole, "well it's really rare and I don't think you need to be tested" I finally lied and said, "well my dad had it" and she replied "well, it's not heriditary". She wanted to test me for thyroid, RA, Lupus and everything else under the sun. I've been tested for a thyroid disorder 4 times and it's always come back negative.

Anyway, she finally relented and ordered the darn test but also insisted I take 2 prescriptions for anti-depressants 1 for morning and 1 for night because it would help with my "IBS". I told her that anti-depressants made my stomach worse, not better and she just wouldn't believe me. She then told me two things:

1. I shouldn't be eating a lot of wheat with IBS in the first place and

2. If I did have celiac, the only thing I could do was "cut back" on gluten and there was no medicine for it anyway, so I really didn't want it.

The woman had me so stressed out that my blood pressure spiked to 130/90 and it's normally about 107/72 (I check about every 2 weeks). Now she wants me to monitor my blood pressure ARRRRRRRGGGGGGHHHHHHH!!!!

Anyway, I got the test but I've been a mess all day because she treated me like I was so stupid. Obviously, I need a new doctor but I haven't found one yet that will actually listen to me when I have a problem, so I rarely even bother to go anymore.

I just want to cry.

OMG. This is unbelievable coming from an MD. Is she older? That's the only "excuse" I can think of. Back in the day, doctors were taught that Celiac is a rare children's disease. Sadly, you might have to fight for the answers you deserve.

Two ideas:

(Forgot to point this out). She may dismiss your claim and not run a FULL Celiac panel or schedule a biopsy (if needed).

Idea# 1: State that your father has Celiac again, and that there is a strong family history of Celiac and intestinal cancer(lie if you have to). The tests for Celiac are very expensive from what I know, so doctors have to justify ordering them. Apparently your suffering isn't enough, go figure. They apparently get S*&% for ordering them if there isn't "sufficient" reason. You could also print out Pub Med articles etc. that show that Celiac can and does appear in adults (and runs in families), and not just thin ones.

Worst case here, you could offer to pay for the tests out of pocket if you're willing. Make sure you get the right tests!!!! Or you'll get a false negative and a look from her that says "I told you so". ;p

Idea# 2: Forget trying and ask for a referral to someone who can help you. Also use this if the first idea fails. I would still try for the first one, because you may help the next person with undiagnosed Celiac who walks into her office. I know my Endo had a real eye-opener with me. I bet she'll take the next person seriously.

Off course, if all other stuff checks out normal (no cancer, bowel infections, etc), then you can always stick with the diet without any help from her. But ONLY do this if you have no desire for a formal Dx. I *personally* think having an official dx is helpful in many ways, although some are fine without one and don't see it as important.

Keep us posted!

P.S. A good doctor should support ANY steps that make a person feel healhier.

[Ryniev]

This is unbelievable coming from an MD. Is she older? That's the only "excuse" I can think of. Back in the day, doctors were taught that Celiac is a rare children's disease. Sadly, you might have to fight for the answers you deserve.

Actually she's younger than I am. I would put her around early 30's. I asked an doctor acquaintance of mine if he had ever heard of celiac and he said "sprue? I've heard of it but it's very rare" and that was the same response that this lady doctor had as well. I live in St. Louis so maybe and we are kind of behind the times. I wonder why it would be so much more expensive to test for celiac than RA, Lupus and thyroid?

Anyway, I have an appointment with a good GI that I saw listed online as knowledgeable on celiac, so maybe I will have better luck there (my appointment is not until September though) I'm really not relishing the idea of injesting gluten for another month). I'm at the point where I actually fear pizza, pasta and bread and have no desire for them because I hate the effects.

[Guest j_mommy]

I'll send you my copy of Celiac Disease: A Hidden Epidemic and you can let your DR borrow it!!!! Jeeeeeezzz

how frustrating....atleast Sept is only a few weeks away...but if your're going to keep eatin gluten then it may feel alot longer. Hopefully this new DR will listen and give you some answers!!!!

Best Of luck!!!!!

[Ryniev]

I actually have that book and I almost brought it with me today and decided against it at the last minute. She's the closest thing I have to a regular doctor but I've only met her 3 or 4 times for things like sinus infections, so I don't have a real relationship with her.

At least I don't need a referral from her to see the GI because it might not ever happen. I'm incredibly lucky to have a fantastic network of friends (one with celiac, one with a stepdad with celiac and one with fm) who have been incredibly supportive. Also, another friend just sent home a gluten-free brochure with my son today. They have seen me suffer and know that it's not all in my head. My husband commented today, "If this doctor thinks this is all in your head, she should come over to the house after you've eaten pizza and spaghetti" He's stuck with me through 15 years of stomach issues.

[gfpaperdoll]

you could also just test thru Enterolab.com

[darkangel]

If you have friends with celiac disease, why not get a referral from one of them for a doctor who can help you? You have no reason to feel stupid. Your doctor, on the other hand, has made several statements that are the height of ignorance. Find another doctor who's trained in diagnosing and treating celiac disease and other gastrointestinal conditions.

[Ryniev]

If you have friends with celiac disease, why not get a referral from one of them for a doctor who can help you?

Unfortunately, one is Montana and the other has a doctor that is nowhere near me. This GI that I'm going to is supposedly good. His name is Weinstock and he was listed either here or another celiac site.

To the person who suggested Enterolab, I was under the impression that they don't actually give a diagnosis of celiac?

[darkangel]

This GI that I'm going to is supposedly good. His name is Weinstock and he was listed either here or another celiac site.

To the person who suggested Enterolab, I was under the impression that they don't actually give a diagnosis of celiac?

Then you should have better luck with the GI.

Enterolab can indeed give you a diagnosis... that's their specialty. Check out their Web site for more info, if you haven't already.

Open Original Shared Link

[jerseyangel]

Enterolab can not diagnose Celiac Disease. They can tell you if your body is having an immune response to gluten (gluten intolerance).

The treatment is the same--gluten-free diet.

[Lisa]

Then you should have better luck with the GI.

Enterolab can indeed give you a diagnosis... that's their specialty. Check out their Web site for more info, if you haven't already.

Open Original Shared Link

Enterolabs cannot diagnose Celiac Disease. They can, identify a gluten sensitivity. They do not claim to diagnose.

[darkangel]

Wow. Sorry. I stand corrected. I have a coworker with celiac disease who's sung their praises to me and tried her best to get me to go through their testing. I thought that's what they were all about. My apologies to the OP for my uninformed post.

[newlyfree]

I wonder why it would be so much more expensive to test for celiac than RA, Lupus and thyroid?

It's not, but she'll get better kickbacks from the prescriptions she can give you for the other problems

(sorry, having a cynical day

[Ryniev]

I'm not going back to that particular doctor but I'm wondering if it would be inappropriate to mail her this article? Open Original Shared Link

Not really to one up her but to educate her so the next person that walks in the door isn't treated like they are insane. It's from the National Foundation for Celiac Awareness and basically reaffirms everything I tried to explain to her (such as it can be genetic, weight loss isn't always a symptom, the WHO says that universal screening is justified, 50% of adults have atypical symptoms, commonly used test aren't necessarily the most accurate, the average diagnosis time is 9 years etc).

I really, really wish that there was more awareness. For instance, I have a friend who has fibromyalgia. She told me she's never even heard of celiac disease but has many of the symptoms and takes a ton of meds and lives off Lucky Charms.

Just venting (and waiting to get my test results).

Probably a dumb question: Will the doctors office usually give you a paper copy of your test results like they do with your lipid panel tests? I want a copy for myself to give to a alternative practitioner if need be.

[tom]

I'm not going back to that particular doctor but I'm wondering if it would be inappropriate to mail her this article? Open Original Shared Link

Do it. For future patients' sake.

I'd be trying to find a way to wallpaper the waiting room w/ it!!!!!!

I really, really wish that there was more awareness. For instance, I have a friend who has fibromyalgia. She told me she's never even heard of celiac disease but has many of the symptoms and takes a ton of meds and lives off Lucky Charms.

Not that it means much, but very very often, cravings are created for *exactly* what does the body the most harm.

And Ryniev . . . . . .your story really choked me up. These bs docs are mind-boggingly horrible.

A little while ago I began collecting stories like yours. So very sad that they are so so common.

I plan on doing something w/ them publicity-wise once the amount reaches an undeniable critical-mass, to the point that their validity cannot be questioned.

Look for me on the Today Show lol

[Ryniev]

Do it. For future patients' sake.

I'd be trying to find a way to wallpaper the waiting room w/ it!!!!!!

Not that it means much, but very very often, cravings are created for *exactly* what does the body the most harm.

And Ryniev . . . . . .your story really choked me up. These bs docs are mind-boggingly horrible.

A little while ago I began collecting stories like yours. So very sad that they are so so common.

I plan on doing something w/ them publicity-wise once the amount reaches an undeniable critical-mass, to the point that their validity cannot be questioned.

Look for me on the Today Show lol

Thanks Tom! I wanted to clarify something. In the past, I have been diagnosed with clinical depression but am not currently depressed. However, since I have been diagnosed with depression before, I think that this doctor did not want to take me seriously. It's easier to just hand someone pychiatric meds instead of trying to find out what is really wrong. Not to mention, I told her that anti-depressants make my diarhea even worse (and really didn't do much for my depression other than make me not feel much of anything at all).

For what it's worth.

[Guest Doll]

You can ALWAYS get a copy of any test results (at least in Canada, I assume the US has similar laws). So take them elsewhere if need be. I feel so bad for you right now. I hope you find a good doc.

[darkangel]

I'm not going back to that particular doctor but I'm wondering if it would be inappropriate to mail her this article? Open Original Shared Link

Not really to one up her but to educate her so the next person that walks in the door isn't treated like they are insane.

You could, but I doubt it would do much good. I've been through six different GIs and none of them are open minded. Most doctors think they know it all and their egos won't allow them to learn anything from a patient, no matter what sources are there to back them up.

[Ryniev]

The doctor's office called today and said all the test they ran came back negative and that there is nothing wrong with me (other than they think I'm a nutcase). I asked if they could tell me what the test for celiac actually and what were the levels or numbers on it and I was told all it said was "negative" so I definately don't have celiac disease and suggested I cut out dairy.

I'm confused. I didn't realize that the test for celiac was just postive or negative.

Once again, I'm as healthy as a horse (a horse who was chronic diarrea, gas, bloating and stomach pain)

[hathor]

Get a copy of your results. You might not have even been given all the necessary tests or they are being read incorrectly. It wouldn't be the first time ... and, if one thing is clear, it is that your doctor is hardly an expert on celiac. It sounds like you might have problems getting the results out of them. Some places are like that. My BIL recently had to go through a lot to get copies of some test results out of a doctor. He had to go to their office & make a pest of himself, basically refusing to leave until they made copies. I think they made him pay, too!

Of course, it could be that you are reacting to gluten, but your body hasn't had the time to be creating blood antibodies yet. That is the theory behind Enterolab testing, to catch things earlier. I think in your situation, given your positive response to not eating gluten, you have a reason to be skeptical of the results.

If you still want something official from a doctor ... and Dr. Fine of Enterolab isn't enough ... get your test results and go to a gastroenterologist for a second opinion.

One thing you might ask on another thread so as to catch people's attention is how long one must be on gluten, and how much has to be eaten, for a blood test to be accurate. It could be that your one month was not enough or you didn't eat enough of the stuff, as compared to your period of being gluten-free. I don't really know. But I'm vaguely remembering folks saying on this forum that it takes longer than a month.

Then again, I don't know why you really, really need an official diagnosis. You feel lousy when you do something. You feel better when you don't. I'm sure you've heard the old joke: "Doctor, it hurts when I do this, what should I do? ... Don't do that." Your doctor doesn't sound smart enough to even know this (search this forum using the words "doctor" and "idiot" -- you will probably find a number of threads) You can choose for yourself not to eat something.

Finally, cutting out dairy COULD help. Many folks seem to have problems with both gluten & casein. Enterolab tests for both.

[hathor]

One thing you might ask on another thread so as to catch people's attention is how long one must be on gluten, and how much has to be eaten, for a blood test to be accurate. It could be that your one month was not enough or you didn't eat enough of the stuff, as compared to your period of being gluten-free. I don't really know. But I'm vaguely remembering folks saying on this forum that it takes longer than a month.

Actually, after I wrote this I saw someone just started a thread on this very topic: Open Original Shared Link

So you might monitor that. That poster said at least six weeks ...

[mftnchn]

Someone here has posted a quote from a expert that suggest 6-8 months on gluten before testing.

[aikiducky]

Nobody really knows what is long enough, even celiac experts don't agree about it. It makes sense when you think that people can develop damage at different rates. If you want an official diagnosis, it might actually be good that your appointment isn't until later because it'll give you more time to eat gluten and develop damage that can be tested.

If you get a biopsy done, and it turns out negative, I'd personally still go gluten free because you already know that it helps.

BUT if you get a biopsy done, and it turns out negative, and you decide not to go gluten free, I'd say get tested again in a few years time. It might be that it just will take that long before you test positive.

Of course, what I hope for you is that this other doctor is a better one, you get the appropriate tests and a firm diagnosis and can start gluten free with no doubts! Weird as it is to hope for a positive diagnosis...

Pauliina