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

Sick For Years And Trying To Figure It Out, Its Gotta Be This


29wilds

Recommended Posts

29wilds Newbie

Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Even if you dont get an official Dx, it will not hurt to try a gluten-free diet. It is healthy. And the proof would be in the eating. :)

Also consider the SCD (Specific Carbohydrate Diet) as it sounds like it fits you.

Wishing you well!

TracyB Apprentice
Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.

I agree with ShayFL - it sounds like the doctors are doing things for you but not hitting the target yet. After the biopsy you may want to go gluten-free as you have nothing to lose. Good luck to you and I hope you find out what's going on - some of your symptoms sound like Fibromyalgia - I work with somebody who had similar to you and she couldn't get out of bed anymore and has 2 kids. She went to a Herbalist and she swears it cured her - she calls all doctors quacks now! It's just a thought - you never know...

TracyB

ShayFL - if you're reading this - my DD's name is Shae! She's just turned 3 - lovely name!

Nancym Enthusiast

Are you getting proper treatment for the hypothyroid? That sure can make you feel miserable if you don't get it treated properly.

Here's a good site to read up on that: Open Original Shared Link

But yeah, it takes an average of 11 years to get a celiac diagnosis. If you want to get on with it, just try out the diet and forget about all the doctors, see if you can't manage to make yourself better.

ShayFL Enthusiast

Shae is very pretty. :) My legal name is Sharon but my family all call me Shay.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to CeliacPI's topic in Related Issues & Disorders
      8

      Lymphocytic Colitis with Celiac

    2. - knitty kitty replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Finding gluten free ingredients

    3. - knitty kitty replied to KimMS's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Gluten free thyroid medications

    4. - knitty kitty replied to Rebeccaj's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      symptoms.

    5. - Rebeccaj posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      symptoms.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,506
    • Most Online (within 30 mins)
      7,748

    Celiac731
    Newest Member
    Celiac731
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.   Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis. "Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."
    • knitty kitty
      Do keep in mind that most gluten free flours are not enriched nor fortified with vitamins and minerals like gluten containing flours are required to do.   Consuming a diet high in carbohydrates without sufficient B vitamins to digest and process them into energy can lead to High Calorie Malnutrition and weight gain. Deficiency symptoms of B vitamins resemble gastrointestinal symptoms when after eating gluten.  Gastrointestinal Beriberi is a form of Thiamine deficiency.   Do talk to your doctors about supplementing with essential nutrients while on the gluten free diet, especially if you're consuming processed foods.
    • knitty kitty
      Do be sure to talk to your doctors and dieticians about supplementing with a B Complex and extra Thiamine (Benfotiamine, TTFD, thiamine hydrochloride) and other nutrients one might be low in due to malabsorption of nutrients in Celiac Disease. This study shows that Thiamine deficiency and Vitamin C deficiency is frequently found in Hashimoto's.  From personal experience, Thiamine and Vitamin C has helped my Hashimoto's. Hypothyroidism Complicated by Vitamin C and Thiamin Deficiency in Surgical Patients https://pubmed.ncbi.nlm.nih.gov/37278003/  
    • knitty kitty
      Hi, @Rebeccaj, Those Villa that get damaged by eating gluten are the same billion that absorb nutrients from our food.  Damaged villa can't absorb nutrients, vitamins and minerals well.  If we don't get sufficient nutrients, our body can't function properly.  We can get brain fog, pins and needles or neuropathy, feeling off balance, and even worsening digestive symptoms. Talk to your doctor or dietician about taking vitamin and mineral supplements while healing.  The gluten free diet can be low in nutrients, especially if you eat gluten free facsimile processed foods.  Gluten containing breads have vitamins added to them to replace those lost in processing.  Gluten free facsimile foods usually are not enriched nor fortified with vitamins.   Taking a B Complex, Benfotiamine, Vitamin D, and magnesium help the digestive tract heal, lowers histamine, and regulates the immune system.  
    • Rebeccaj
      What are some symptoms people have experienced when someone has cooked toast? Also, pasta? I've been diagnosed with celiac disease 5 years ago but sometimes symptoms then other times no symptoms its weird.?  so neurological   is brain fog, off balance, pins and needles, inflammation, also if eat it's like high inflammation then the villas affected!  Has anyone experienced this because I'm really starting to get confused but have diagnosis from blood test also endoscopy but it's just an ache. 
×
×
  • Create New...