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

Trying To Figure This All Out


lgreg

Recommended Posts

lgreg Newbie

In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!


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



Celiac.com Sponsor (A8-M):



Guest cassidy

It certainly couldn't hurt to try a gluten-free diet. A lot of us have been in the same position with doctors. If you try gluten-free, I would stick to a basic diet that is naturally gluten-free, like meats, fruits and veggies. If gluten is your problem, it will take your system time to heal. I didn't start feeling better at all for 2 weeks. After that I had good and bad days for a while. Now, 3 months in, I'm doing very well and have adjusted. Good luck figuring it out, I know it can be tough!

Rachel--24 Collaborator

It doesnt sound like you've been tested for Celiac so why not go ahead with that before changing your diet? You need to be eating gluten in order for tests to be accurate so once you start the diet you can no longer have those tests w/out going back on gluten for several weeks or months. Maybe schedule with a different doctor since you didnt like the one you saw...push for the Celiac panel (make sure its the whole panel) and get the tests done. Then start the diet and see how it works for you. Even if the tests are negative the diet may be your answer. If I were in your shoes I'd do the bloodwork so as to not have unanswered questions later on.

Guest webleybg

Do you live in a small town? I have found that I have to really push to get the right testing done. I live in a small town, and when I was first diagnosed my Dr. had spent a whole YEAR testing me for bacterial infections - ghiardia - ulcers, and more. She even tried to diagnose me with "Irritable Bowel Syndrome", and when I wouldn't back down she finally said she would try something else. She happened to test me for the Celiac blood panel, and I found out the only reason she did that was because a Dr.'s wife in her office had been diagnosed the year before. Otherwise she knew nothing about it (I'm grateful she tested me though). Anyway, my recommendation is don't back down! Good for you for hanging in there & keep doing so even when you feel like they think you're making everything up - just keep at it until you get a response. I have learned the hard way that Dr.'s don't always know what to look at, and sometimes are too quick to make a generic diagnosis. It doesn't mean they are bad at their job, but some need encouragement or even help from the patient in order to make the accurate diagnosis. If they diagnose you and you feel that the diagnosis is inaccurate then you have to speak up about that too! GOOD LUCK! ;)

Lillyth Explorer
In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!

Those are the same symptoms I had/have. I had no idea what was wrong with me.

Then my husband & I went on a fast together (pre-wedding, to flush out all the "bad stuff" we didn't want to take with us into the marriage), and blammo! I had a peice of ravioli & immediatly had a headache, felt exhausted, etc. I didn't look back after that.

(I thought at first it was a wheat allergy & started eating spelt, kaut, etc., but I was still tired all the time. So I'm now on another fast to get that gluten out.

Like the others suggest though, I'd do all the tests now, while you're on gluten - when I went to the doc this morning, there were tests she couldn't do becuse I no longer eat gluten. But after the tests are done, I'd go gluten free for at least 3 weeks, then have a peice of toast. I knew within 20 minutes of eating wheat - but I don't know if that's everyone.

Good luck, and I hope you get this figured out soon! (It's the pits not to know)...

Lillyth

lgreg Newbie

Oh wow,

Thank you all for your GREAT responses! I didn't even think (duh) about not being able to be tested for Celiec if I put myself on a Gluten Free Diet!

Yes, I live in a very small town, this doctor is about an hour away in a larger town and I chose her based on her bio.....obviously she had someone write it for her!!!!!

There is a naturopath in town that I have a call in to, and need to see if my insurance will cover him I think a naturopath will be more in tune with my personal philosophies, and be much more proactive than mainstream physicians.

I just got my work schedule for the next few months, and will be traveling a lot in June and July, so I need to get myself healthy and strong again. I also will be working caterers hours....so stamina will be key. I am bound and determined to get to the bottom of this!

Again, thank you all.....I will keep you informed!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,118
    • Most Online (within 30 mins)
      7,748

    Cwbtex
    Newest Member
    Cwbtex
    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

    • Colleen H
      Yes this is very frustrating for me ... not sure what to think.  Feels like I'm having reactions to a lot of things  Now applesauce?? I don't understand 😞 
    • Colleen H
      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
×
×
  • 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.