Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gi Appt On Monday, What ?'s Should I Ask


Squeak1209

Recommended Posts

Squeak1209 Newbie

So hopefully someone can help me, it looks like a lot of people on here are going through the same thing I am, or have already gone through it. I am fed up with feeling like this, I've had diarrhea twice this week, my right toe has gone numb, I'm nauseous, I have that "brain fog" thing happening, I'm so tired I don't want to do anything but sleep. I don't want to eat, because I feel like crap when I do, but if I don't, I still feel like crap. I tried going gluten-free on my own with no help, things got better for awhile, but now they're going downhill fast. My insides feel like they're revolting against me.

So I called Beth Israel in Boston and they have an opening this Monday. I have written down all my symptoms that I can think of (although with the brain fog it's a little difficult), I've been trying to keeps tabs on anything that happens, even if it doesn't seem related, like having my toe go numb, dizziness, short breath, stumbling, achiness in my muscles, yadda yadda, and even the obvious, nausea, diarrhea, bloated, muscle cramps, vomitting...

My question to all of you who read this is, if you have been through this, could you help me? I don't know what questions I should ask the GI. Anything specific? I would really appreciate it, I'm sure you have an idea of the gratefulness I would have.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



magyar Newbie

So hopefully someone can help me, it looks like a lot of people on here are going through the same thing I am, or have already gone through it. I am fed up with feeling like this, I've had diarrhea twice this week, my right toe has gone numb, I'm nauseous, I have that "brain fog" thing happening, I'm so tired I don't want to do anything but sleep. I don't want to eat, because I feel like crap when I do, but if I don't, I still feel like crap. I tried going gluten-free on my own with no help, things got better for awhile, but now they're going downhill fast. My insides feel like they're revolting against me.

So I called Beth Israel in Boston and they have an opening this Monday. I have written down all my symptoms that I can think of (although with the brain fog it's a little difficult), I've been trying to keeps tabs on anything that happens, even if it doesn't seem related, like having my toe go numb, dizziness, short breath, stumbling, achiness in my muscles, yadda yadda, and even the obvious, nausea, diarrhea, bloated, muscle cramps, vomitting...

My question to all of you who read this is, if you have been through this, could you help me? I don't know what questions I should ask the GI. Anything specific? I would really appreciate it, I'm sure you have an idea of the gratefulness I would have.

Hi, Sorry you feel so rotten, but most of us here can relate. My question to you is - are you seeing a Celiac Dr. or a GI? Lot of Upper GI Drs. have no clue and don't believe you. I know, my family Dr. said I was WRONG! If not check out the Internet in your area or even your local hospital. Then you won't have to ask the questions, the Dr. will. Brain fog is the worst. I thought I was nuts. The 24/7 nausea, the bathroom hunts when you go out. Your intestines are inflamed. When you go off of gluten there is what's called the healing crisis. You body is dumping toxins and while this stuff floats in your system on it's way out it makes you sick. My husband and I rented a two bathroom apt. because of Celiac. Even though you went off gluten you may be getting contaminated in areas you have no idea. Vitamins, soap--oatmeal--nailed me! Cheaper soy sauce has wheat in it. Some candies do. Your toothpaste. A lot of Celiacs can't eat corn either, so you may have more issues. For me it's even tomato sauce. I am 59 and was diagnosed in 2004. I don't digest a lot of food. I have to eat smaller meals, so I started juicing. Turning out well also detoxing. When I started juicing, I had rotten symptoms, dizzy, nausea, lack of appetite...healing crisis. Not anymore. If you can find a Celiac Dr. I would go there first. When you get on the right track you will be amazed how quickly you will heal. Good Luck...

Coinkey Apprentice

So hopefully someone can help me, it looks like a lot of people on here are going through the same thing I am, or have already gone through it. I am fed up with feeling like this, I've had diarrhea twice this week, my right toe has gone numb, I'm nauseous, I have that "brain fog" thing happening, I'm so tired I don't want to do anything but sleep. I don't want to eat, because I feel like crap when I do, but if I don't, I still feel like crap. I tried going gluten-free on my own with no help, things got better for awhile, but now they're going downhill fast. My insides feel like they're revolting against me.

So I called Beth Israel in Boston and they have an opening this Monday. I have written down all my symptoms that I can think of (although with the brain fog it's a little difficult), I've been trying to keeps tabs on anything that happens, even if it doesn't seem related, like having my toe go numb, dizziness, short breath, stumbling, achiness in my muscles, yadda yadda, and even the obvious, nausea, diarrhea, bloated, muscle cramps, vomitting...

My question to all of you who read this is, if you have been through this, could you help me? I don't know what questions I should ask the GI. Anything specific? I would really appreciate it, I'm sure you have an idea of the gratefulness I would have.

In my brief experience with the walk in clinic doctor, I told rather than asked. I said- look, these are my symptoms- I feel better when I don't eat gluten so do some tests for that. (not in those words but that's the gist of it- and frankly, he didn't respond much but handed me the sheet to take to the lab for tests without saying that it was indeed a celiac panel). The answers I got from the results (different doctor - walk in clinics suck) were "not many people actually get positive results and you're deficient in vit D and ferritin, if you feel better without gluten keep eating that way, it's not worth it to do any further tests at this time" and he walked out of the office as I was trying get a clearer understanding of what the results were. So as to what questions to ask- I found that ANY questions caused the "knowledgeable" doctors to leave the office, while simply TELLING them got me what I wanted. I sincerely hope that your doctor is open to answering any questions you may have.

Squeak1209 Newbie

Hi, Sorry you feel so rotten, but most of us here can relate. My question to you is - are you seeing a Celiac Dr. or a GI? Lot of Upper GI Drs. have no clue and don't believe you. I know, my family Dr. said I was WRONG! If not check out the Internet in your area or even your local hospital. Then you won't have to ask the questions, the Dr. will. Brain fog is the worst. I thought I was nuts. The 24/7 nausea, the bathroom hunts when you go out. Your intestines are inflamed. When you go off of gluten there is what's called the healing crisis. You body is dumping toxins and while this stuff floats in your system on it's way out it makes you sick. My husband and I rented a two bathroom apt. because of Celiac. Even though you went off gluten you may be getting contaminated in areas you have no idea. Vitamins, soap--oatmeal--nailed me! Cheaper soy sauce has wheat in it. Some candies do. Your toothpaste. A lot of Celiacs can't eat corn either, so you may have more issues. For me it's even tomato sauce. I am 59 and was diagnosed in 2004. I don't digest a lot of food. I have to eat smaller meals, so I started juicing. Turning out well also detoxing. When I started juicing, I had rotten symptoms, dizzy, nausea, lack of appetite...healing crisis. Not anymore. If you can find a Celiac Dr. I would go there first. When you get on the right track you will be amazed how quickly you will heal. Good Luck...

I am seeing a GI Dr. who specializes in Celiac at Beth Israel in Boston. I've had it with my Dr. looking at me like I'm just a whiner. My mother is helping me, she looked up online where I should go and I thankfully got an appt. for this Monday. A girl I know has similar problems and is seeing a GI, but I dont think the Dr. is specialized in celiac, but she told me to go on the BRAT diet when I start to get sick. I didn't realize that even such small amounts could make me this sick!!! Glad I finally am doing something about it though!!!! Soap can affect?!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748

    Clare Durham
    Newest Member
    Clare Durham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      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.
    • Colleen H
      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
    • Jmartes71
      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
      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
      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.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.