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Questions To Ask The Doctor

Booghead

By Booghead
in Coping with Celiac Disease

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Booghead Contributor
Booghead
Posted

Sorry to bug everyone again :P Doctors appointment tomorrow at 4:10 PM. My follow-up. He is going to tell me my biopsies were negative, I am hoping he will still dx me. I need a diagnosis for school and college in the future. I have some questions picked out to ask him, but I was wondering if you guys could think of anything i should ask?

I am going to ask him about neuropathy after someone posted about it I read up on it and have many of the symptoms.

I'm going to ask him about my stomach burning.

I'm going to ask him about cutting out dairy and soy.

I'm going to ask him about going gluten free and having normal bowel movements twice a day to eating gluten once and I am still having the once daily constipated bowel movements.

I'm going to ask him about this blasted back pain that is killing me as I type this. (someone said this could be from gall bladder problems)

I'm going to ask to get tested for food allergies (they run in the family) and I am sure there are other things I'm allergic too.

Anything you guys wish you had asked the doctor? Anything I am forgetting? Also tips on a difficult doctor, who may not be willing to diagnose on elimination diet and blood test? They have been very nice so far IMO.

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kareng Grand Master
kareng
Posted

You are a wise woman for one so young. Writing down your questions so you don't forget is a great idea. Is your mom going, too? Make sure she has seen your questions & knows why you are asking before the appointment. She may want to add some. She may not realize some of the things you are asking about.

I forget , did you have a positive blood test? If so, you could still have damage that was missed on biopsy. There is 16-20 feet of small intestine. Taking 6 biopsies smaller than a sequin, might miss it.

Do tell him all the positive things of being gluten-free. He may want you to be stricter for a month or two and then eat gluten to see if it makes you sick.

Good luck!

Booghead Contributor
Booghead
Posted
  • Author

A gluten challenge sounds like torture. And I honestly don't even crave it anymore. Dairy though? I crave dairy daily. Hourly haha. And yes I did have a positive blood test. I will probably feel so good gluten free after another two months that nothing would make me eat it again. My mom is going. She's my ride. Getting my license in January but I don't think I would ever go alone. I need my mother for stuff like this.

beebs Enthusiast
beebs
Posted

Ask for a copy of every single test and results. I didn;t and it has made a mess of my diag.

kareng Grand Master
kareng
Posted

A gluten challenge sounds like torture. And I honestly don't even crave it anymore. Dairy though? I crave dairy daily. Hourly haha. And yes I did have a positive blood test. I will probably feel so good gluten free after another two months that nothing would make me eat it again. My mom is going. She's my ride. Getting my license in January but I don't think I would ever go alone. I need my mother for stuff like this.

Blood tests sometimes are negative but should be positive. But positive, is positive. You & Mom hold firm on that!

Get a note on his prescription pad that says you have Celiac and must not eat any wheat, rye or barley. You will need to bring your own food if special accomendatons cannot be met. I have a note like that so when I go to FIRST Robotics competitions, I can bring my food into arenas that don't allow food.

Good luck! Let us know what happens!

No celebrating at Appleby's! :o

kareng Grand Master
kareng
Posted

Ask for a copy of every single test and results. I didn;t and it has made a mess of my diag.

Oh yeah! This, too. Make sure you have all the blood test results, an op report or procedure report and a pathology report.

Did they test you for things like iron, ferritin, B12, vitamin D, calcium? These are things that can be low because you can't absorb them. It is also a good way to measure if you are healing. You can get the low ones repeated in 6 months to see if they got better.

domesticactivist Collaborator
domesticactivist
Posted

I agree you need to get copies of the tests, but I'd go a step further and get a copy of my entire chart. If you call ahead, the office can get it printed up for you. Usually the older records are archived and it takes some doing to get them. Reading through my chart and my kids' charts was enlightening! I haven't been able to get my childhood records which sucks! Do it now, and then get your new info annually in the future!

Last time I went in I brought in a statement of all the symptoms I had in addition to a list of questions. I brought a copy for the doctor to keep and put in my chart and a copy for myself to take notes on. This was great, and my doctor even appreciated it.

If you have more tests you would like run or have questions about, put those on the list. You might look into potential deficiencies.

Good luck!

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rosetapper23 Explorer
rosetapper23
Posted

I agree that you need to be tested for common nutritional deficiencies. Since you're having neuropathy issues, be sure that he tests for B-12 and ferritin. Also, Vitamin D and Folic Acid can be low in celiacs.

Booghead Contributor
Booghead
Posted
  • Author

Big Bummer alert. My doctors appointment has been canceled, I live in Northern Utah and power is out in much of the state, and at my doctors office. 5 high schools were let out or canceled (mine not one of them of course I'm never that lucky). I am really bummed out. Waiting for so long and now I have to wait longer. *sigh*

ravenwoodglass Mentor
ravenwoodglass
Posted

Big Bummer alert. My doctors appointment has been canceled, I live in Northern Utah and power is out in much of the state, and at my doctors office. 5 high schools were let out or canceled (mine not one of them of course I'm never that lucky). I am really bummed out. Waiting for so long and now I have to wait longer. *sigh*

That is a bummer but the extra time will give you more time to have positive results from the diet. With positive bloods and an recovery from your symptoms that lead to the testing you should be able to get your 'official' diagnosis. Your regular GP can give you an order for the nutrient levels blood work and have copies sent from the lab to the GI so you don't have to wait to find out what you should be supplementing. Your GP might also give you the note you need for school if needed.

kareng Grand Master
kareng
Posted

Gives you more time to think of more questions! ;)

mamaw Community Regular
mamaw
Posted

I agree with all others..If he states you do not have celiac then ask about gluten intolerance or gluten sensitive...Now days they say there are 3 million un-dx'd celiacs running around the US.& more than that are the ones who are sensitive....soon we will take over the world!!!!

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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