Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I'm Miserable!

brandyburl

Recommended Posts

brandyburl Apprentice
brandyburl
Posted

I have a dr appt Friday to talk with my dr about possible celiac or gluten intolerance. In the mean time I'm miserable. My back is killing me. It feels like a muscular pain but I haven't done anything to injure it. Pain started yesterday while sitting at my desk at work. I feel like I'm living on Tylenol for the constant head and neck pain. Sometimes it helps sometimes not. I can't remember the last time my bowel movements weren't liquidy and extremely foul smelling. The nausea seems to be the worst in the mornings. I wake up really hungry and I always want carbs. This morning I ate oatmeal and then the nausea started. Every morning I wonder if I'm going to be able to make it to work. I know it's important to consume gluten for celiac testing but I feel like I'm poisoning myself. I'm so anxious to get some answers and feel better.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

:( I hope today is better for you.

1desperateladysaved Proficient
1desperateladysaved
Posted

I am just wondering if you tried gluten free and then ate gluten for testing.  Gluten challenges like that are not easy for many of us.

brandyburl Apprentice
brandyburl
Posted
  • Author

I have decided to go ahead and go gluten free. Shortly after eating the oatmeal this morning I had an episode of hypoglycemia. I had even put pb in the oatmeal for protein and fat so I don't understand why my blood sugar dropped. It was 66.

frieze Community Regular
frieze
Posted

I have decided to go ahead and go gluten free. Shortly after eating the oatmeal this morning I had an episode of hypoglycemia. I had even put pb in the oatmeal for protein and fat so I don't understand why my blood sugar dropped. It was 66.

nothing wrong with a blood sugar of 66.  that said, it can be the "rate" of drop that gives the symptoms.  and perhaps what you perceive as hypoglygemia is something else entirely?

brandyburl Apprentice
brandyburl
Posted
  • Author

I've had the same symptoms: shakes, sweats, dizziness, muscle weakness and tested my sugar and it was in the 40s. Perhaps you are right though. This episode passed quickly unlike the time I was in the 40s. I have no idea what it would be though. I'll be mentioning it to the dr.

Tiredsean Explorer
Tiredsean
Posted

How old are you and did this all just start or its been years of symptoms.Also are your muscles tense then in pain and or just pain.Is it limited to neck back shoulders or sometimes legs buttocks etc?? And is it burning pain Sometimes or just pain,? And sinus problems?

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

Celiac.com Sponsor (A8-M):


brandyburl Apprentice
brandyburl
Posted
  • Author

I am 33. The head and neck pain has only been going on for about a month. The back pain started yesterday. I had a really stressful week a month ago and that's when the head and neck pain started. I assumed it was all stress related. I also had some nausea and fatigue and developed canker sores in my mouth. I had also experienced pain and intense itching in my left breast (maybe totally unrelated but thought I'd throw that in). I saw my dr after that stressful week when I didn't feel better. He said it was probably a virus and focused more on my breast pain ordering a mammogram which was followed by an ultrasound in which they did find a lymph node but the report stated the findings were benign.

The pain in my neck does feel tense. The pain in my back is on either side of my spine below my rib cage. I've also had pain in my shoulders when I'm reaching for things and lifting.

I don't have any sinus problems other than a runny and itchy nose. I've also got scabs inside my nose for some reason.

I have had other symptoms for longer. I've made a list of them to show my dr Friday.

I should also mention that my stress level is not as bad as it was that one week. Although I am stressing about what's going on with my health I'm not nearly as upset as I was that week.

Smylinacha Apprentice
Smylinacha
Posted

Hope you feel better soon. I went gluten free a month ago and feel a whole lot better. I know that in order to get the blood work done I need to get sick again....not sure I can go through that again. Gastro said try this first. I had back pain too, neck and head pain, bloating, rashes and felt sick and lethargic ,most of the time and wanted to crawl in bed after eating. Had fog and depression too. Not anymore!

brandyburl Apprentice
brandyburl
Posted
  • Author

Thank you for your kind response.

I've been driving myself crazy trying to self diagnose. Google is not my friend. I read articles and then worry a bit more. One article said that people who hAve had weight loss surgery are likely to develop gluten intolerance. I had gastric bypass in 2008. I'm thinking that could be where my problems started.

frieze Community Regular
frieze
Posted

Thank you for your kind response.

I've been driving myself crazy trying to self diagnose. Google is not my friend. I read articles and then worry a bit more. One article said that people who hAve had weight loss surgery are likely to develop gluten intolerance. I had gastric bypass in 2008. I'm thinking that could be where my problems started.

depending on the form of bypass surgery, you may also be B12 def.

brandyburl Apprentice
brandyburl
Posted
  • Author

It was gastric bypass (RNY). On a routine gyno visit a couple years ago my obgyn mentioned that I could have a B12 deficiency so he ordered lab. Results were normal. However, that WAS 2 years ago and a lot can change. 

frieze Community Regular
frieze
Posted

It was gastric bypass (RNY). On a routine gyno visit a couple years ago my obgyn mentioned that I could have a B12 deficiency so he ordered lab. Results were normal. However, that WAS 2 years ago and a lot can change. 

if you had normal B12 storage capacity, it can take 5 years to use it all..

brandyburl Apprentice
brandyburl
Posted
  • Author

if you had normal B12 storage capacity, it can take 5 years to use it all..

Interesting. I'm so anxious to hopefully get some answers. 

Just another Celiac Newbie
Just another Celiac
Posted

(((HUGS))) to you!!!! I was in pain for six months, back pain, pain that started in my left side and went across my stomach (belly button) all the way to my right side, my entire core hurt. I was on my couch most of that time. The doctor pumped me full of radiation trying to figure out what was wrong, first it was my gall bladder, then my kidneys, they checked my stomach, my liver, my esphogas(sp) and a bunch of other things. They found that my gall bladder isn't working properly, my esophogus isn't working properly, I have cysts on my kidneys, finally they did an endoscopy and found an angry red spot in my stomach and signs of Celiacs in my intestines, so they sent me for blood work and as of 2 weeks ago I have been diagnosed with Celiacs Disease. Its been a week and a half that I have been gluten free or at least trying to make sure everything I put in my mouth is gluten-free. I am not sure how well I am doing as the rest of my family didn't go gluten-free and I am the one who cooks all the meals and cross contamination is extremely possible but for the most part the intense pain is gone and I am starting to feel much better and have more energy!!!

  All I can say is it will get better!!! and in the mean time I will hope and pray that you get a quick diagnosis whatever that may be!!!

Archived

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

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


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By trents · Posted

      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...