Anyone Else Experiencing These Symptoms?

[Mantooth]

Hi everyone,

I’m currently in the process of figuring out if celiac disease might be the cause of some persistent symptoms I’ve been dealing with, and I’d love to hear from others who’ve had similar experiences. I’m not diagnosed yet, but these are the symptoms I’ve been struggling with:

Diarrhea

Constipation (sometimes alternating between the two)

Elevated Liver Enzymes - (dont know why)

Visual Snow syndrome (static vision)

Sandy stools or really skinny - (sorry for the TMI)

Muscle cramps and general soreness

Tingling in my hands and feet

Bloating that can feel really uncomfortable

Tiredness and extreme fatigue

SI joint pain and stiffness

Herniated disk and degenerative disk disease + stenosis. 

Ive been trying to figure out whats causing these symptoms for 8+ years and I believe its caused by Celiac. Ive had a blood test come back negative so my doctor immediatly writes it off now. Ive seen every type of specialist under the sun and no one can help me. Im currently on a gluten-free diet but have recently learned about reactive foods that can cause the same symptoms as well so im consistenly changing my diet to accomidate. Did anyone else have these symptoms before getting a diagnosis? 

Thank-you!

[nanny marley]

Hello mantooth nice to meet you it's so uncanny what you wrote you sound just like me even the back issues are exactly the same and I'm new here too trying to find out if I have the same had I too have been struggling to find answers with my docters I don't have a diagnosis but I've been struggling like forever and was told ibs and health aniexty was my problem but on researching I've come to the conclusion it's probably more because i cut gluten and lactose out for 6 months and  it was a incredible change for me so although I can't help with diagnosis I can say your not alone in trying  to find answers 😊

[Mantooth]

Thanks for the kind words. It's hard to convince my doctor to investigate further because of a negative blood test and he only tested me for one marker. 🙃 I've come to the point where I need to take this into my own hands because the doctors are infuriating and it's not going anywhere. I've been gluten free for a week and feeling better but I was still consuming dairy and I think that's what's backing me up. Next week no dairy introduced. 

[nanny marley]

Your on the right track lactose was a good change for me too this is a great forum keep asking questions I think we both found a pot of gold here to help us 😊 x

[Scott Adams]

Welcome to the forum @Mantooth, your symptoms are very common in people with undiagnosed celiac disease (I had most of your symptoms as well), and this article talks about the various symptoms of celiac disease:

 When you were tested in the past for celiac disease were you on a gluten-free diet? In order to properly test anyone for celiac disease you need to be eating lost of gluten everyday for 6-8 weeks before being screened, otherwise your results could be false negative. Feel free to share your old blood test results if you have them.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Mantooth]

Thanks for the responce Scott! When I was tested I figured out that I was on a diet and wasnt eating lots of gluten, Im using the LoseIt App to track my food intake so I went back and checked. My doctor only tested me for TTG-AB-IGA and nothing else. My results were <0.5 out of <12u/mL. Im now believing that I wasnt eating enough gluten to have a response, no gluten challenge or anything. Does anyone know what tests I should ask my doctor to do? I want to be armed with information before I go in there again.

[Scott Adams]

I would ask for:

Total IgA
tTG-IgA
tTG-IgG
DGP-IgA and DGP-IgG

[nanny marley]

Thanks for posting that Scott I will arm myself too I had a blood test today and a fecal test for calprotein I'm not expecting any positive results I've been gluten free for over 6 months but I will be back has Arnold says with that information 👍

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[nanny marley]

Fantastic info 👍