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T.H.

Sometimes I Want To Just Smack Doctors

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Hearing about doctors asking us to go back on gluten for a celiac biopsy have always frustrated me. IMHO, most of them ask this with an utter lack of knowledge for what it means.

If a GI doc sat down with a celiac, found out they were off gluten and had a frank discussion with them about what their symptoms were so there was a good understanding of the risks, that's one thing. But how many of them do this? How many just say: go back on gluten so we can do the test.

My daughter gets neuro problems from eating gluten. One bout of gluten cc - not even eating gluten on purpose - and she's hysterical from anxiety attacks, sometimes it morphs into this frightening urge to do herself harm. She develops gait issues, balance problems, and trouble controlling her limbs - signs of potential mild gluten ataxia, although we haven't had her tested for that. She's just 13 years old now.

She still has a couple issues we don't completely understand, though, so we went to a ped GI. I have no interest in getting her a biopsy to confirm celiac disease. Blood tests were positive, reaction is positive, and there are 4 other celiacs in the family. I'm comfortable with this diagnosis. And I told him as much: I wasn't looking to confirm the celiac disease, I want to find out what else is a problem.

The GI agreed with it all. He thought an endoscopy would be very useful for the information we're trying to find out, because we're at the limit of what blood tests can do. We're looking for evidence of parasites, inflammation, that sort of thing.

I'm concerned there may be something going on in there, so I'm okay with that. But then he leaves the office and when I get the call from his nurse? Then I'm told we should put her back on gluten to do a biopsy, just to 'make sure' about the celiac diagnosis. He never once asked what her symptoms were, he just wants to do it.

Which means he's encouraging me to do something that looks like it causes my daughter neurological damage, without once checking to determine the risk.

I am beyond pissed off right now. And I can't even vent at the stupid man, because he's on vacation. :angry:

Needless to say, I'm finding another ped. GI. I'm not doing to my daughter what I did to myself all these years: giving my doctors chance after chance, once they've already shown me that they aren't listening and that their decisions are not well thought out when it comes to my health.

But argh! We should not HAVE to go through this. Doctors should be thinking about their patients, not just their tests!

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Is she still having GI issues? If not then the person to see might be a neurologist. Although the reality is that if gluten is giving her neuro issues there isn't a whole lot they can do other than telling her to be strict with the diet. They might be able to give her something that would help when she gets the anxiety attacks from CC to use on just an as needed basis.

I can totally sympathize with what you are going through. I think it will be a long time before medicine really realizes just how much damage can be done other than just villi destruction.

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With a jury of your peers (Celiacs), I'm sure it would be self-defense!

I hate when docs say one thing to you and put something else in the record!

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While I completely agree it's out of line for him to expect your daughter to go back on gluten for testing, is it possible that the nurse just added that info while on the phone becuase it's standard procedure for other patients? Or was she reading his notes to you directly? It's absolutely inexplicable that he would NOT tell you this while in the office! If he really expects that she go back on gluten I would be just as angry as you are! It's not even as if she has no test results. She has positive tests. If she doesn't have GI issues I would skip the endoscopy and go to a neurologist instead. They can do an MRI or a CAT scan to make sure there is not something else going on.

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We had something similar happen. Our DD has an epi for wheat due to past reactions. We finally got in with a ped gi who had demonstrated for another patient that she thoroughly understands what protections a celiac needs when it comes to environmental exposures at school, and she further demonstrated a solid understanding of celiac issues in our appointment. But in the end, as we are parting, she wanted to schedule for endoscopy - oh, and do a gluten challenge since we are doing the endo. Apparently she didn't understand that DD had an epi. We had an appointment later that day with our DD's allergist, so I even went so far as to go to the store and buy a simple wheat food to challenge her at the allergist. Needless to say, when the DOCTORS were presented with doing the physical challenge themselves (I assured them that I had her epi with me and that I would be ready to administer it) - they all advised us strongly to NOT DO IT, unless in a hospital. SIGH . . . sometimes they just don't think through the whole process, and sometimes they revert to autopilot.

And, really, there needs to be more awareness about the risks of gluten challenges . . . but, that seems almost secondary to just gaining more general awareness of celiac disease. And at least we finally got referred to a pedi dermatologist that was incredibly understanding and wonderfully helpful! I have found that our specialists (an endocrinologist, dermatologist and allergist) are much more understanding about the limitations of a gluten challenge and do not support doing that to ourselves. GIs tend to lack a broader understanding of celiac complications.

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Sometimes I feel like we are just science experiments to Dr.s! They don't think through what effect their tests have on the patients, they just want scientific data.

I would call the office to get a clarification on who said to have her eat gluten. If it was just the nurse stating usually procedure without knowing all of the facts, that's one thing. BUT if the Dr. said it..start looking for another one.

Don't dr's have a credo "do no harm"? :o

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Is she still having GI issues?

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I love the topic's title. Just like many here, I had doctors prescribe me Paxil and Prozac for reasons I don't know. I was going crazy

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I love the topic's title. Just like many here, I had doctors prescribe me Paxil and Prozac for reasons I don't know. I was going crazy

There ya go!!! They prescribe Paxil and Prozac, they drive you crazy, and then they say, see, I toldl you so :rolleyes:

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There ya go!!! They prescribe Paxil and Prozac, they drive you crazy, and then they say, see, I toldl you so :rolleyes:

:lol:

That is so funny - thanks for the great, funny post this morning . . . hope you meant it to be so funny. Too bad the reality is not so funny . . . .

I couldn't find a ROFL emo!

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Glad it brightened your day :D

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There ya go!!! They prescribe Paxil and Prozac, they drive you crazy, and then they say, see, I toldl you so :rolleyes:

ha, oh that's awesome. So true! :D

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Shauna, I have a lot to say on this issue, but I really think it just echoes the advice and sentiments of the other posters and you. I actually took my daughter off of gluten and dairy three weeks before her appointment with her pediatrician because we could not go ONE MORE DAY with her in pain The last gluten I gave her was at a school potluck and she passed out in my arms after eating a piece of cake. I was already gluten/dairy free so finally the lightbulb went on in my head that her issues were exactly mine. (I felt like such a bad mom that it took me so long to figure out she was going through the same thing as me but I didn't see it). Anyhow, I'd been on this board for awhile, and I had made up my mind that if her pedi wasn't 100% supportive of my choices that I'd find one who was. It was non-negotiable.

Amazingly, both our doctors have been completely supportive and never pushed the gluten challenge. I'd already decided against it for obvious reasons. So, I think those doctors are out there somewhere. I personally would never do a gluten challenge and never would I put my baby through that. I know how it feels.

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Oh, I just created a post about having my LO on a gluten challenge. This post re-iterated for me how horrible it feels to think that I am harming my child that way.

I hope that the pp was correct and the nurse mistakenly told you that because it is standard procedure for endo.

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