Need Help Interpreting Symptoms And Lab Tests

[emme]

Hello All,

 

I'm new here. Thanks for taking the time to read this and give me your thoughts. My apologies ahead of time for the length, I just feel like the whole story of my symptoms could be significant and I almost never put all of it together:

 

Background:

 

-Childhood- Joint pain (and weakness) in hands beginning as a toddler. My dad has (RA factor negative) Rheumatoid Arthritis that only affects his hands. With his diagnosis and several doctors observing the redness and swelling in my joints, I was sent for testing. All tests came back normal.

I was sick often, seemed to have an ear infection or strep all the time. Dental issues began young with lots of cavities despite diligent oral hygiene (thanks parents!). I have always had many white spots on my teeth.

-Elementary-Middle School Age- Continued to have the joint pain and body aches. I was also exhausted and had an upset stomach fairly often. Missed a decent amount of school. A doctor (who had never seen before and I never saw again after) diagnosed me with fibromyalgia. My mom and I were both sort of relieved with my finally having a diagnosis, but after a few years of adhering to the light exercise, eat “healthy” and get lots of rest Rx I was given, I didn’t see much improvement.

-High School Age- All of the above continuing but add depression, kidney stones, and having my gallbladder removed due to pain after eating and a test showing it wasn’t working at all.

-Early 20’s- Began having bad acid reflux and could not nail down the trigger. It wasn’t the usual suspects- bananas, carrots and mushrooms were foods that really set it off. Other times I had no idea what it could have been (gluten never crossed my mind). Eventually I was throwing up weekly from this, so I started on Pantaprozole, which helped. I also began being constipated all the time, but I never paid much attention to this.

-A few years ago (shortly after I started a vegetarian diet and really upped my carbs…) I was watching a TV show with my husband when I had an “episode” where I became unresponsive when he was talking to me- was still conscious, but had no recollection of “it” (body stiffened, I stared straight out and couldn’t answer his questions) happening. Long story shorter, it looked a lot like a seizure. I went in to see a doctor when I also started having whole body left-sided numbness. I had an MRI and two sleep deprived EEGs which showed nothing. Also during this time, my husband took a photo of me with a bright flash and my eyes clamped shut for 30 seconds and I couldn’t open them (I now know this is called blepharospasm)! My neurologist thought I was absolutely crazy, and I felt I was, too. I couldn’t drive for 3 months, and I was diagnosed with complex migraines.

Verapamil controlled these for 2 years, but my blood pressure started being pretty low and I was feeling extra dizzy, so I discontinued and was migraine free for 2 years after that…until now.

I have also had some major oral issues in the past couple years with 13 cavities being my last count. When I went in to get a number of them filled the doctor could not believe how many canker sores I had in my mouth and even offered to do the work on another day after they healed. I told her I always had tons of canker sores and we proceeded.

 

My most pressing issue at the moment is that I get a migraine every time I eat anything. Anything high in gluten and sugar is much worse. I also have had mild diarrhea for the past 6 weeks, which is out of the ordinary for me. 

 

I’m now 27 and am frustrated with how crummy I feel so much of the time, while also not knowing if there might be an all-inclusive diagnosis for me. My current doctor ordered a CBC, Thyroid (TSH Reflex T4 value of 1.45)  and Celiac blood test. She let me know that they all came back normal and I have online access to the results.

 

These are my celiac blood test results:

 

 

 

Component

Your Value

Standard Range

Units

TISSUE TRANSGLUTAMINASE AB, IGA

<1.2

<4.0 (Negative)

U/mL

 

Component

Your Value

Standard Range

Units

IGA

122

65 - 421

mg/dL

 

 

 

 

 

 

 

 

 

 

Are these the most comprehensive tests for Celiac? (I did try reading through the FAQ here about labs, but I am honestly stil lost!).

Should I try going gluten free to see if symptoms improve? And if they do, does that just mean that I gluten sensitivity (basically, can sensitivity cause these symptoms- esp. the neuro ones?)

 

Thank you so much for any feedback you have.

 

 

 

[GottaSki]

Welcome Emme!

 

With your history you could have Celiac Disease.

 

I would make sure you have your docs run a full Celiac Antibody Panel -- You had what are commonly used as screening tests by many doctors. 

 

Total Serum IgA (you had this)

EMA-IgA

tTG - Both IgA and IgG (you had the IgA)

DGP - Both IgA and IgG

 

Celiac Disease can prevent absorption of nutrients, so nutrient blood tests can be another piece of the puzzle.

 

B12, D, K, Iron, Ferritin, Copper and Zinc

 

Complete Metabolic Panel can also reveal some clues. -- if you can see your CBC online, check to see if any of the numbers are borderline.

 

It is important that you continue to eat gluten until all testing is complete - including endoscopic biopsy should you and your doctors decide to have this done.

 

Once you are certain testing is complete - than regardless of results remove ALL gluten for 3-6 months (6 is better) to monitor symptom improvement.  Non Celiac Gluten Intolerance has many of the same symptoms as Celiac Disease yet there are currently no tests that can indicate NCGI.

 

Hang in there and keep asking questions

[emme]

Thank you so much. This is really helpful for me in making sense of the tests.

I think this is the first time I've ever typed out my medical history. Helpful and therapeutic! Ah