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

First Dr. Appointment Today

melanie-c

Recommended Posts

melanie-c Newbie
melanie-c
Posted

I have my first Dr's appointment today at 2:30 PM. I'm hoping he takes me seriously and doesn't say something like - oh I doubt you have that or it's very rare. My main issue I'm going to start with is the cronic daily loose stools. Then I'll talk about my stomach bloat, gas, cramping, running to the bathroom. The stomach issues have been going on since at least early 2000 and I'm pretty confident I can remember these issues when the kids were little and they were born in 92, 97. I know there was a time at least in the early 2000's if not late 90's that I went in to this same Dr. with GI issues and he said I had IBS. This was just said after talking to me, no tests or anything. I also want to emphasize that I have had low iron levels for a while now(including this Dr's office calling me to tell me to take iron pills a few years ago) and at least once had a liver panel be off.

I've really been paying attention to my stomach issues this week. The majority of my issues are after lunch, although they do happen at different times too.

Monday: Ate out for lunch - Cramping, bloating, gurgling, had to use bathroom at work (I try very hard not to)

Tuesday: Brought lunch - gurlging and light cramping all afternoon

Wednesday: Brought Lunch- bloating, light cramping, slight gurgling

Thursday: Ate out for lunch - Serious bloating and gas that extended into upper abdomen, very uncomfortable all afternoon.

Wish me luck!

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Well, good luck.

In all those lunches, did they contain gluten?

melanie-c Newbie
melanie-c
Posted
  • Author

Well, good luck.

In all those lunches, did they contain gluten?

Yep - Although I have had gluten for lunches and dinners too - it's most pronounced and maybe because I'm sitting at work and can't get up and move around, go to the bathroom, etc.

Monday - Brick oven made pita's and probably some type of gluten in the falafel -

Tuesday- Pasta and breadcrumbs

Wednesday - Pasta

Thursday - Flour Tortilla - not sure about the tortilla chips I ate. Not sure if they were corn or flour.

AVR1962 Collaborator
AVR1962
Posted

In my case, my stomach yuck was from dairy, and still is. Journaling is good. With me I had to look back 24 hours to figure out what was effecting me if it was glutens, dairy would give me a gurgly stomach as soon as it got into my system. Good luck and let us know how it turns out.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Go in educated! If he tells you it's rare then ask him if 1 in 133 people in the US is rare. Take this list of tests and make sure the full panel is run: Open Original Shared Link

Highlight the name of each test and even ask the person drawing blood to verify that those are the tests being run. Good Luck!

melanie-c Newbie
melanie-c
Posted
  • Author

In my case, my stomach yuck was from dairy, and still is. Journaling is good. With me I had to look back 24 hours to figure out what was effecting me if it was glutens, dairy would give me a gurgly stomach as soon as it got into my system. Good luck and let us know how it turns out.

Wow - 24 hours with Gluten. I've been Dairy free for more than a year, so I know it's not that. I used to think it was and there was some improvement after going off dairy, but it didn't last. I actually eat no meat, eggs or dairy. My diet is completely plant based.

I had triscuits for lunch along with hummus today (homemade so I know what was in it) and the gurgling, bloat and gas is really getting going now. Not the worst I've ever had, but it's early still :) I started eating that about an hour ago. It will be interesting to see how I feel when I'm at the Dr's. Might be good to be bloated and gurgling.

melanie-c Newbie
melanie-c
Posted
  • Author

Go in educated! If he tells you it's rare then ask him if 1 in 133 people in the US is rare. Take this list of tests and make sure the full panel is run: Open Original Shared Link

Highlight the name of each test and even ask the person drawing blood to verify that those are the tests being run. Good Luck!

Thanks - Just printed. This is very helpful.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Wow - 24 hours with Gluten.

Gluten reaction times can vary a lot from person and even for the same person. In some cases reactions can take as long as a week to show up although most react within 1 to 3 days. It can make it difficult to pinpoint what 'got' you after you have gone gluten free so keeping a food and symptom log can be very helpful. Eventually you should be able to figure out your own symptom pattern. Glad to hear you haven't gone gluten free yet. Hope your appointment went well. Always keep in mind that your doctor works for you. If your doctor refuses to test when you have symptoms suggestive of celiac it is time to find a new doctor or at least get a referral for a second opinion.

mushroom Proficient
mushroom
Posted

This is probably too late for your appointment, but don't let the doctor try to tell you you have IBS (Irritable Bowel Syndrome). You wouldn't believe the number of celiacs who walked around for years with that diagnosis :rolleyes:

melanie-c Newbie
melanie-c
Posted
  • Author

Things went very well. I was happy to hear they are taking me seriously and are planning on doing all sorts of things to rule a LOT of things out. The first person I talked to was a student physican's assistant. She was very thorough and spent a lot of time talking to me. The only thing I didn't like is that she said there was no way I could get enough nutrients because I was vegan and didn't eat/drink dairy. After that she seemed to look at me like I was a freak, but she seriously needs to get some training in nutrition because she was acting like there was no way I could thrive without drinking milk/eating cheese ?????????? I eat healthier than the majority of Americans and am very diligent on the nutrients I put in my body. There are plenty of ways to get "more" of the nutrients that dairy provides, and that isn't hard at all. I digress about that. The Dr' came in and talked to me for a while too. Here is the plan.

This week: 3 stool samples I have to collect for the next 3 days and a a complete celiac panel, CBC, liver panel, Iron test and I think there might have been a few things like I think I heard him say Thyroid, etc. He want's to rule out any parasites. He was asking me all sorts of questions about eating anything, any illnesses, any exotic vacations, any antibiotics I've taken, any raw foods like sushi, etc.

Then when I take those in to the lab early Monday I'll get the bloodwork done. When the labwork comes back we will re-evaluate. If the celiac panel comes back positive then we will go that route, if not then he is going to send me to a GI Dr (I think the next step would be this even if the celiac panel comes back) unless they find something like parasite or something that comes back abnormal that leads them in another direction.

Once the bloodwork comes back he is going to most likely send me to the GI Dr to get 1. a colonoscopy to rule out any colon issues, Crohns Disease and other issues like that. - If the Celiac info comes back positve and he might have even said even if it doesn't an endo to look for damage. I'll push for this even if the labwork comes back negative.

I'm happy that they seem to want to do many different forms of ruling out things to find out what/if anything is wrong. He did say in the end, it may end up being IBS and he did put IBS for now on my chart (well that was on my chart years ago- what good does that do, lol). Anyway.......it's a step in the right direction. I'm really nervous about collecting these stool samples the next 3 days. But, it will be good to have it checked out to see what's in it.

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like it was a pretty good appointment. The one thing I would request is that they do both the endo and the colonoscopy at the same time. No reason for you to pay copays for 2 procedures when both can be done in one shot. If your blood work is positive you do need the diet no matter the results of the scope. After all celiac related testing is finished do give the diet a strict try no matter what the results are but DO NOT go gluten free until after all the celiac tests are done. You don't have to wait on the results though.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    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
      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.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      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
      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

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By AlwaysLearning · Posted

      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.