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

Newbie With Some Questions

PurelyCanadian

Recommended Posts

PurelyCanadian Newbie
PurelyCanadian
Posted

Hello all you kind folk. I found you today and hope that you might be able to point me in the right direction.

I have not been feeling 'well' for years and I have been going from doctor to doctor to doctor for years trying to find out what is wrong with me. After many tests and blood work, I have been given various diagnoses over the years such as 'stress', 'panic attacks', and my all time favorite 'it's all in your head'. My doctor won't take me seriously and insists that I am having panic attacks. He is trying to get me to take paxil, which I refuse to do. I disagree with his diagnosis as I do not have a sensation of impending doom or panic.

When I say I haven't felt well, here is what I mean. After eating, usually 30 minutes to an hour afterwards, I get a weird (not well) feeling in my stomache and feel as though I am shaking on the inside of my body. I can't see the shaking taking place on the outside of my body but I can definitely feel it on the inside. Along with the shaking, I experience more headaches than usual, brain fog, some lightheadedness, and a general feeling of weakness. I have lost 25lbs since Christmas because I am becoming afraid to eat. I don't like the nasty, sickly, shaking feeling.

Would these symptoms be typical of a celiac patient?

I notice that this shaking/not well feeling is much, much worse after consuming bread or pasta. While on vacation three months ago I ate dinner at the most amazing italian restaurant (loads of bread and pasta) and an hour after I left I felt like I was going to die. I had major shaking on the inside and I felt like I was going to pass out (everything was going black around me). I don't generally eat pasta in my diet so could consuming a HEAPING plate full cause this kind of reaction?

I sincerely apologize for my lengthy post. I just want to know if I could be on the right track. I would sincerely appreciate any advice or information you may have.

Cheers!

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted

Welcome!!

Well I don't know if shaking is typical. I never had it/heard it. Maybe someone else can help you in this. But the general feeling of not feeling well is typical. Still this doesn't mean you are celiac. Have you checked your blood sugar? Have you done any blood tests? Is it very difficult for you to have a blood test for celiac and a biopsy? If there is no way you can do these tests (they are expensive, I know..) maybe you could try to exclude gluten from your diet and see how it works (don't do that gluten free diet if there is a possibility to have the tests for celiac cuz the results will be false)

Hope I helped. Ask anything you want.

Meline

PurelyCanadian Newbie
PurelyCanadian
Posted
  • Author
Welcome!!

Well I don't know if shaking is typical. I never had it/heard it. Maybe someone else can help you in this. But the general feeling of not feeling well is typical. Still this doesn't mean you are celiac. Have you checked your blood sugar? Have you done any blood tests? Is it very difficult for you to have a blood test for celiac and a biopsy? If there is no way you can do these tests (they are expensive, I know..) maybe you could try to exclude gluten from your diet and see how it works (don't do that gluten free diet if there is a possibility to have the tests for celiac cuz the results will be false)

Hope I helped. Ask anything you want.

Meline

Hi there, Meline

I have had my blood sugar tested on multiple ocassions and it was normal each and every time. I haven't yet talked to my doctor about my suspicions about being gluten intolerant so, no, I haven't yet had any blood work specifically for celiac. I think I will try to do a gluten free diet for a few weeks and see how I feel. I had a completely gluten free dinner tonight (whole foods only) and wow, no shakes! Of course I still don't feel well but having no shakes for a change was awesome!

If anyone else has anything to share, I'd love to hear from you :)

Lisa Mentor
Lisa
Posted

If you have any intent to be tested for Celiac, DO NOT Begin a gltuen free diet, it may not be as accurate. You may have some food allergies or sensitivities and not specifically Celiac.

MELINE Enthusiast
MELINE
Posted
If you have any intent to be tested for Celiac, DO NOT Begin a gltuen free diet, it may not be as accurate. You may have some food allergies or sensitivities and not specifically Celiac.

Yes. Dont' start it. Have the test first.

veggienft Rookie
veggienft
Posted

You have it correct.

The question before you is, will refraining from ingesting gluten stop your symptoms. Your answer will be:

* I don't get sick when I don't eat gluten

* Eating gluten makes no difference

You can get tested for celiac disease. If the test comes back positive, then you'll have a name associated with "I don't get sick when I don't eat gluten". If the test comes back negative, you could still have a celiac-related disease. False negatives are roughly as common as correct diagnoses.

A negative test result will likely convince you not to try a gluten-free diet. If you have a celiac-related disease, then that's a disaster.

Currently, by orders of magnitude, the best diagnosis comes from trying a gluten-free diet. Many doctors recognize this fact and test exclusively with the diet.

If you need a paper diagnosis so that you can show it to someone, then delay the diet until after the test. If you want to know if you have celiac, or a celiac-related disease, try the diet.

..

glutenfreedom Newbie
glutenfreedom
Posted
Hello all you kind folk. I found you today and hope that you might be able to point me in the right direction.

I have not been feeling 'well' for years and I have been going from doctor to doctor to doctor for years trying to find out what is wrong with me. After many tests and blood work, I have been given various diagnoses over the years such as 'stress', 'panic attacks', and my all time favorite 'it's all in your head'. My doctor won't take me seriously and insists that I am having panic attacks. He is trying to get me to take paxil, which I refuse to do. I disagree with his diagnosis as I do not have a sensation of impending doom or panic.

When I say I haven't felt well, here is what I mean. After eating, usually 30 minutes to an hour afterwards, I get a weird (not well) feeling in my stomache and feel as though I am shaking on the inside of my body. I can't see the shaking taking place on the outside of my body but I can definitely feel it on the inside. Along with the shaking, I experience more headaches than usual, brain fog, some lightheadedness, and a general feeling of weakness. I have lost 25lbs since Christmas because I am becoming afraid to eat. I don't like the nasty, sickly, shaking feeling.

Would these symptoms be typical of a celiac patient?

I notice that this shaking/not well feeling is much, much worse after consuming bread or pasta. While on vacation three months ago I ate dinner at the most amazing italian restaurant (loads of bread and pasta) and an hour after I left I felt like I was going to die. I had major shaking on the inside and I felt like I was going to pass out (everything was going black around me). I don't generally eat pasta in my diet so could consuming a HEAPING plate full cause this kind of reaction?

I sincerely apologize for my lengthy post. I just want to know if I could be on the right track. I would sincerely appreciate any advice or information you may have.

Cheers!

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

Celiac.com Sponsor (A8-M):


glutenfreedom Newbie
glutenfreedom
Posted

Hello, Newbie,

Quite a problem you have there. My symptoms were not that different from yours. I am a biopsy-diagnosed celiac. It's been 6 yrs. But that does not mean you are celiac. The Canadian Celiac Assoc. might be helpful for you and ask for the name of a Dr. who is really familiar with celiac disease. Many doctors are still not astute at diagnosing this disease. You need to get on this asap because you are suffering from an illness of some kind, I believe. There can be secondary problems if it goes on too long. Am I correct in thinking you implied that your iron, folate and B12 levels are all at a healthy level ? None of mine were for 6 years before the diagnosis, yet, you can have healthy blood and still be celiac. What can I say the disease is fifferent in everyone ! However, that is the need for scientific investigation. Very best of good luck to you in your search.

May you solve your problem, shortly.

glutenfreedom

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. 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/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.