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

I'm Miserable!


brandyburl

Recommended Posts

brandyburl Apprentice

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

:( I hope today is better for you.

1desperateladysaved Proficient

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

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

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

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

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

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

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

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

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

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

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

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

(((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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748

    DRIZZE
    Newest Member
    DRIZZE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.