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

Can it be Celiac? Did you have similar symptoms?

Mandiee

Recommended Posts

Mandiee Newbie
Mandiee
Posted

Looking for guidance and answers, please help. My symptoms started Nov. 2017, almost 4 months ago. For about 3 days I felt extremely fatigued. Exhausted and I had no idea why. Then the constant dizziness/vertigo hit me like a ton of bricks. I thought I was coming down with the flu because I felt like I was going to pass out. It was so bad laying or standing up that I was bedridden for a month and a half. All I did was lay down 24'7 and crawled out of bed to barely take a shower and brush my teeth. I had to quit my job and I couldnt finish my semester in school. Dizziness followed by extreme breathlessness, tingling/numbness in the hands and feet. In the middle of December the joint pain (knees, elbows, toes, most of all Fingers!) and upper back pain started. I was in so much pain I cried alot and till this day the joint pain remains after all other symptoms have ceased.

3 weeks ago a new symptom appeared. A very quesy stomach that never goes away, lots of noises coming from my gut, loose stools and/or diarrhea and the stomach pain that comes with diarrhea. I do not have insurance so my doctor has been limited on the amount of test she can run on me since I do not have the funds to pay upfront in full. She initially thought thyroid problems but ruled that out with a blood test. She has tested for the general diseases she thinks are linked to my symptoms and all have came back negative. Doing all this research I keep coming back with Lupus, Lyme and Celiac. I need help and im begging to get my life back. I am becoming extremely depressed because of all this and have had many suicidal thoughts just to end the pain and anxiety that comes with these symptoms. Did anybody have these symptoms prior to diagnosis? Was it a sudden onset? I was fine, then one day that all completely changed. ?

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

Hi and welcome Mandiee :)

 

5 hours ago, Mandiee said:

Did anybody have these symptoms prior to diagnosis?

Individuals reactions differ and no-one here can diagnose you, but all the things you describe are amongst those reported for Celiac / NCGS so it's possible you and your doctor are on the right track.  There's a link in this post which shows the massive numbers of potential symptoms linked with gluten. I've experienced nerve tingling, stomach issues, back pain, depression, anxiety, suicidal thoughts, fatigue, dizziness and more. 

The good news is all of them resolved or improved on a gluten free diet. :)

As you're currently on gluten if possible ask your doctor to test you for celiac. These are the tests:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

I know this is an additional expense, but given how important your health is it would be money well spent in my view at least.  Note however that not everyone who has an issue with gluten will test positive. I didn't, and the endoscopy which I subsequently had didn't show the damage to my intestines which indicates celiac. However because of the response my symptoms had to the gluten free diet and the subsequent gluten challenge I undertook my doctor recommended I go gluten free for life. 

So, to recap / summarise:

  • You've found a great site with lots of people who have gone through similar. You're welcome here and we will do our best to help. Don't lose heart!
  • The negative thoughts you're having may be mediated by the body's response to gluten. 
  • Stay eating gluten if you can possibly get that blood test ran. This is a good time to push for answers.
  • See if you can find any family history of similar symptoms that may be related. It could be a clue to a genetic component.
  • If you absolutely cannot get that test now you could go gluten free, keep a food journal and see what impact that has on symptoms. That could give you further data and more importantly relief from feeling ill, but may leave you without as firm an answer as you may wish.

But most of all, see the first point. There's light at the end of the tunnel, whether it's indeed gluten or not. Stay strong and make sure you stay connected with those around you. 

Best wishes,

Matt

ravenwoodglass Mentor
ravenwoodglass
Posted

If expense is a hindrence with getting the blood work go to the hospital's billing dept with which your doctor is associated. They may have a sliding fee scale or even forgive costs for lab work etc that is done there.  The programs are income dependent but it is worth a try if you have no insurance or high copays. You may also qualify for Medicaid and you can apply just for that without applying for other social services.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.