4 years, 10 doctors. My Celiac story

[BuddhaBar]

Like a lot of celiacs, my journey to diagnosis was a long one. I suspect my Celiac genes got activated about 4 years ago. 

I got constipated at first. Not anything severe and I thought it was my diet. Didn't pay much attention to it. Then the sleep issues started. I didn't have anxiety, but I wasn't as relaxed as I used to be. I had just started a new job and moved to a new town so I thought it was stress.

A couple of months later I got muscle twitches and pins and needles all over my body, even in my eyeballs. Sometimes the muscle twiching was so severe that I lost my breath when I got a twitch in my stomach area. It was like being punched. Went to the doctor, blood work showed that I had a severe vitamin D deficiency. Took supplements for a couple of months and those symptoms disappeared. 

Then the burping started. It wasn't big burps. It was just small amounts of air, but I burped a lot. Like 100 times a day. At the same time I got those flip flops in my chest. My heart kinda skipped a beat and jump started again. Got really scared! Went to another doctor, did an ultrasound of the heart and a 24 hour ECG. My heart was fine. My fitness level was average. Nothing out of the ordinary. Some extra beats, but doctor said everyone gets those. 

Burping got worse. Went to another doctor and did an endoscopy. I had acid reflux and got antacids. Later read that those flip flops in my chest could be caused by trapped air. 

Sleep issues continued. Went to the doctor again. I didn't want any strong meds so I got Mirtazapine which is actually an anti-depressant, but you can use it for sleep too. Worked like a dream. I loved those pills.

Suddenly my constipation resolved. It turned into diarrhea instead! Thick, frotty, foul smelling, dark brown/grey porridge. 3-4 times a day and in large amounts. Went to the doctor AGAIN! Stool sample. Nothing out of the ordinary. No parasites or anything. 
Diarrhea didn't stop. Doctor again... This time they put the camera where the sun doesn't shine. Crohns, negative. Cancer, negative. Micro colitis, negative. Diagnosis: IBS. 

Then I had IBS for a couple of years until I hurt my back. Went to the pharmacy to get my pain killers. I had a hard time standing upright because I had a slipped disc in my lower back so I moved around as I was waiting looking at various stuff. On one shelf I saw a Celiac test you could do at home. So I thought "why not" and bought it. Went home, took the test and it was positive. I bought one more test just to be sure. Positive. 

Doctor again and this time I took those tests with me. "Look! I told you I was sick!!". Rest is history ?

What about your celiac stories? 

[Karaokequeen]

The burping, flip flops, vit D deficiency and IBS is where i am now. I have a test at the docs next week a celiac test but i am hating having to wait. I didnt know you could buy them yourself - Are they reliable? 

[BuddhaBar]

Yes, you can buy a celiac test at the pharmacy. It's a simple blood test. Only a positive or a negative result. It indicates if you have gluten antibodies or not. 
The test I got was 96% accurate. I got 2 tests just to be sure. 

The waiting for the doctor's test results are pretty frustrating. And then there is the waiting for the endoscopy. And you are not allowed to stop eating gluten before the endoscopy is done. THAT part was frustrating. I knew how to get better, but I wasn't allowed to for 6 weeks. 

You probably got reflux. I didn't get any heartburn because the acid didn't reach that high up, but I had a mild inflammation in the lower part of my oesophagus. I just had the burping and the flip flops from trapped air. Trapped air can irritate the vagus nerve and that causes the heart to skip beats. Not dangerous, but pretty scary when it happens. 
If you have celiac disease, those flip flops will eventually disappear, but it can take some time so be patient. 

[Awol cast iron stomach]

On 12/27/2019 at 6:19 AM, BuddhaBar said:

Like a lot of celiacs, my journey to diagnosis was a long one. I suspect my Celiac genes got activated about 4 years ago. 

I got constipated at first. Not anything severe and I thought it was my diet. Didn't pay much attention to it. Then the sleep issues started. I didn't have anxiety, but I wasn't as relaxed as I used to be. I had just started a new job and moved to a new town so I thought it was stress.

A couple of months later I got muscle twitches and pins and needles all over my body, even in my eyeballs. Sometimes the muscle twiching was so severe that I lost my breath when I got a twitch in my stomach area. It was like being punched. Went to the doctor, blood work showed that I had a severe vitamin D deficiency. Took supplements for a couple of months and those symptoms disappeared. 

Then the burping started. It wasn't big burps. It was just small amounts of air, but I burped a lot. Like 100 times a day. At the same time I got those flip flops in my chest. My heart kinda skipped a beat and jump started again. Got really scared! Went to another doctor, did an ultrasound of the heart and a 24 hour ECG. My heart was fine. My fitness level was average. Nothing out of the ordinary. Some extra beats, but doctor said everyone gets those. 

Burping got worse. Went to another doctor and did an endoscopy. I had acid reflux and got antacids. Later read that those flip flops in my chest could be caused by trapped air. 

Sleep issues continued. Went to the doctor again. I didn't want any strong meds so I got Mirtazapine which is actually an anti-depressant, but you can use it for sleep too. Worked like a dream. I loved those pills.

Suddenly my constipation resolved. It turned into diarrhea instead! Thick, frotty, foul smelling, dark brown/grey porridge. 3-4 times a day and in large amounts. Went to the doctor AGAIN! Stool sample. Nothing out of the ordinary. No parasites or anything. 
Diarrhea didn't stop. Doctor again... This time they put the camera where the sun doesn't shine. Crohns, negative. Cancer, negative. Micro colitis, negative. Diagnosis: IBS. 

Then I had IBS for a couple of years until I hurt my back. Went to the pharmacy to get my pain killers. I had a hard time standing upright because I had a slipped disc in my lower back so I moved around as I was waiting looking at various stuff. On one shelf I saw a Celiac test you could do at home. So I thought "why not" and bought it. Went home, took the test and it was positive. I bought one more test just to be sure. Positive. 

Doctor again and this time I took those tests with me. "Look! I told you I was sick!!". Rest is history ?

What about your celiac stories? 

I was misdiagnosed IBS for decades based on symptoms only. That diagnosis tends to stick or the it's psychological gets thrown in.

I was missed many times despite visiting general Dr, allergist/immunologist s, dermatologists over the years etc . I even had colonscopies but no endoscope.

The biggest miss was probably in 2004 I was covered in PUPPP rash almost everywhere. A rash that now U of I links to celiac DH. My dear nurse Carla (my angel) called my OB concerned. The Dr response as she thought I asked the nurse to call I didn't ( I too was exhausted from the uterine inversion I had experienced, that I didn't learn about until the OB who was caring for me during my son pregnancy asked me to retrieve my records from my former OB)

Back to the PUPPP rash Dr OB -My daughter's delivery OB   Respond upon examining me " it's just a PUPPP rash quit being a baby" (Bless you Carla you tried and I always appreciate you being my angel it at least was put in medical records?) 

I was diagnosed in 2016 by a Dr after another allergiest realized I had non IgE mediated issues going on after I was glutened at my sister's 50th b day event despite contacting ahead for gluten-free. She sent me to an expert her former teacher as she didn't have the testing my case required at the time.

I am so glad you got the answers you needed. I am not surprised you discovered / diagnosed self happens a lot around here. 

Happy New Year