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Mandiee

Can it be Celiac? Did you have similar symptoms?

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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. ?

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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

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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.

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