Hi - Please Help

[Lucy7]

Hi guys.

I just wanted to get some advice.

I am in the process of being tested for celiac disease. I had blood tests on Wednesday so should have the results next week some time. Basically I just wanted to know if what I'm experiencing sounds like celiac? My Dr laughed when I mentioned it to him, but has sent me for tests. I'm not sure why he would find it funny. Anyway here are my symptoms.

Loose stools

Constant nausea

Left side pain that doesn't go away

Back pain

Headaches

Mouth sores

Fatigue

Anxiety

Strange dents in finger nails, also itchy rash on fingers.

Muscle pain

Those are some symptoms I have been experiencing. Around 2 months ago I was diagnosed with a kidney infection, I was prescribed anti biotics and they cleared it up. Since then I have not been well, the pain in my left side never seems to go away. I have suffered with anxiety for many years now and all of this is making it 10x worse for me. I am so worried that there's something seriously wrong with me.

I have visited the Dr's numerous times over the past couple of months but so far the only thing they have found is low vitamin D. I am waiting for an appointment from the hospital to go for an ultrasound scan. I'm just really worried that they will find something bad.

I'm starting university next week and just want to feel better.

Thanks for reading.

[nvsmom]

That could well be celiac disease, including the low D. I had most of those symptoms for years too.  I also have hypothyroidism so some may be attributed to that - I only mention it because hypothyroidism is more common among celiacs than the regular population so if it is celiac disease, it is good to get hypothyroidism checked out too.

 

Do you know if the doctor ordered a few celiac disease test for you?  Most celiac disease tests are only about 75% sensitive so they miss about 1 in 4 celiacs. If you order multiple tests the disease is more likely to be caught.

 

This is the full panel:

tTG IgA and tTG IgG

DGP IgG and DGP IgA

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

We can help you a bit with your results when you get them, if you wish.

 

Non-celiac gluten sensitivity (NCGS) could also cause your symptoms, plus it is much more common than celiac disease. The only test for it at this time is a positive response to the gluten-free diet. If all tests are negative, you might want to give the gluten-free diet a try for a few months and see if it helps you.

 

Best of luck with the tests!   And welcome to the board.

[sillyker0nian]

Hey, and welcome to the board! 

 

I have many of those symptoms for years now as well, which I also came unto the board and asked around, so I just not two hours ago got my Celiac Blood Panel put in at my nearest hospital lab  

 

The only different thing for me is that when I experience pain or discomfort it mostly is located on the right side, not the left. But, I digress. 

[nvsmom]

For me that left side pain was related to constipation - the descending colon is there.

[Lucy7]

Thanks for replying.

I'm not sure exactly what tests my Dr has requested as I could barely make his writing out on the request form (my Dr is in his 90's). I will post updates when I get results and hopefully some of you will be able to help me understand them.

I know I've only been having these symptoms for a short while but I'm feeling so fed up. I've been off work now since the end of July, I just want a bit of normality back. Before I started with these symptoms I already had health anxiety, I just can't stop worrying. I think this is probably adding to the stress of it all. I am trying my best to remain positive but some days it's really hard.

Is it normal for suspected celiacs to have an ultrasound scan?

Thanks.

[WinterSong]

When you get the test results, ask for a copy and (if you are comfortable) let us know which tests they were. If he didn't run a full Celiac panel, you have every right to tell him that you want to have the proper tests done. 

 

It is a very stressful time when you are trying to get a diagnosis, so cut yourself some slack and remind yourself that it's okay to feel tired and anxious. When I was diagnosed, I had been very sick for weeks, running around to different doctors and doing my own research. It's exhausting and hard. But hopefully you will get an answer and will be able to start making a positive change in your life. 

 

Concerning your doctor laughing at your request for the testing, I have heard of some doctors having the "Doctor Oz" frustrations. Whenever Dr Oz talks about a given disease, people flock to their doctors thinking that they have it. I've heard of one or two doctors who have the "Ugg, another person who thinks they have Celiac" mentality. I am a big proponent in EVERYONE getting tested for Celiac, and you certainly have many symptoms that match. Don't give your doctor's attitude a second thought.

 

As to your last question, I haven't heard of ultrasound scans being a helpful tool for potential Celiacs.  

 

Wishing you all the best!

[Lucy7]

Thanks for the info.

Still waiting for results, I will post them on here when I get them.

I have picked up my prescription today for my vitamin D capsules, and my dosage has changed quite a lot. Last month I was given 1 booster which was 10,000 unit, and 30 x 800 unit capsules (1 daily). This month I have been given 5 x 20,000 unit booster capsules to take immediately and then 30 of the 800 unit capsules. My vitamin D level was 45 at the beginning of August and hasn't been checked since then so I can't understand why they've upped the dosage so much.

Also, am I able to try going gluten-free now that I've had the blood tests, or do I need to continue eating gluten until I've had further tests?

Thanks.

[cyclinglady]

Keep eating gluten until all testing is complete. He may order an endoscopy (that is standard protocol) to biopsy your small intestine. That is the gold standard of determining celiac disease.

[WinterSong]

Agreed, continue eating gluten until the endoscopy is done (if you go down that path).