First Steps?

[MimiK]

Hi everyone!

 

I'm brand new and wanted to say hi! I am glad to have found this forum and I look forward to being able to help each other in our struggles!

 

So, a little introduction...

 

Looking back, I would say that I've struggled with "tummy troubles" for the last 12 years. It started as a bit of indigestion, and progressively has gotten worse. About 5 years ago I saw a GI who did a colonoscopy and diagnosed me with IBS, but I remember him saying hes "not sure what else it could be". Hah. That's something you like to hear from your doctor. So I left, having a nagging feeling that I wasn't quite satisfied with the results, but thought maybe i was just in denial.

 

But in the last few years, I have seen my symptoms getting worse and worse and worse. Increased D, more constipation, Increased bloating and abdominal pain - along with plenty of distention (ugh) to make me look pregnant. Headaches, nausea, more light-headedness, weight gain, tingliness in my hands, decreased vision, bad memory, fatigue, fuzzy head - or what I think most call head fog, itchy skin on my legs & arms, cranky, low back pain, etc. etc. etc. I feel like the list goes on and on and on. I've got a friend who finally got appropriately diagnosed as celiacs too. So after I found out about her diagnosis, which was about a year and a half ago, I asked my GP to do some bloodwork, including celiac. He came back and said everything looks normal, but I had very low VitD levels. Ugh. Another dead end.

 

Fast forward to today.  It is rare if, after I eat a meal, my stomach does not gurgle, churn, swish swish around, rumble, make awful noises, or cramp up. Any of which either sends me curled on the bed clutching my distended, cramping stomach, or running to the bathroom every 10 minutes. I'm not sure which is worse. And lately this is happening after every meal. I'm not sure what I'm doing wrong or not doing. But its looking more and more like celiacs to me, even if the doctors don't see it. Does it sound like celiacs? or am i imagining things?

 

I want to make an appointment with my GI, and I intend to ask (demand, if need be) for the right tests, because I'm tired of feeling like crap (no pun intended), and well, tired. What are the right tests for me to get to get properly diagnosed as celiacs? And are there others I should get too, if they help with the overall diagnosis?

 

thanks for your help!!

-M

[Deaminated Marcus]

Welcome to the forum Mimi,

 

Here are is the Celiac blood test panel that I did:

 

Total Iga
tTG-IgA
DGP-IgA
DGP-IgG

 

You have to be eating gluten weeks prior to the tests.

 

Good luck with your consult.

[Scarletgrrrl]

Hi Mimi

I am new to the forum too. I recommend staying on gluten until you get tested. I think this may have stuffed off my blood test results. I haven't been officially diagnosed but I am pretty sure it is related to gluten.

I went to see a gastroenterologist who was a locum for the practice's real doctor. He thought I had IBS but after doing my own reading it doesn't sound like it in my case. I can relate to a lot of your symptoms: bloating, ab pain, distention, brain fog, tingling in fingers (and toes). I had weight gain too. I think this was from malabsorption of food I would want to eat more.

I hope you find some answers soon.

S

[nvsmom]

Welcome, Mimi.

The tests Marcus lasted are good ones. There is also the EMA IgA, tTG IgG, and the older AGA IgA andAGA IgG. As Scarletgrrrl said, you will need to stay on gluten until testing is done.

You could also request the endoscopic biopsy. That procedure sometimes catches serologically negative cases of celiac disease.

If everything comes out negative, you could have Non-Celiac Gluten Intolerance. NCGI has every nasty symptom of celiac disease except for intestinal damage, but there is no way to test for it except for a gluten-free trial.

Best wishes.

[MimiK]

thanks for the kind replies, everyone! I have to find a GI close by that is covered by insurance. my old one I went to is not covered under my new insurance. I definitely will keep eating gluten while I'm tested, everything I've read so far is in agreement with what you mentioned.  And thanks for the test names! I'll be sure to update you when I get my results!

[MimiK]

So, update: I have a doctors appointment on Monday to do some "preliminary" tests. Its my GP, and not a GE as they want to see me first and refer me. So, I hope that I can get the below tests done to get this figured out. Wish me luck!

 

Total IgA

tTG IgA

tTG IgG

AGA IgA

AGA IgG

DGP IgA

DGP IgG

EMA IgA

 

A few questions: What are the "normal" numbers for these tests? And are there certain ranges where I will know the results mean I fall into a "gluten sensitive" or celiac category?

 

thanks all!

[kareng]

So, update: I have a doctors appointment on Monday to do some "preliminary" tests. Its my GP, and not a GE as they want to see me first and refer me. So, I hope that I can get the below tests done to get this figured out. Wish me luck!

Total IgA

tTG IgA

tTG IgG

AGA IgA

AGA IgG

DGP IgA

DGP IgG

EMA IgA

A few questions: What are the "normal" numbers for these tests? And are there certain ranges where I will know the results mean I fall into a "gluten sensitive" or celiac category?

thanks all!

Each lab measures slightly differently. Sort of like measuring in inches or centimeters. So lab results will come with the " ranges". Like 0-6 normal. >7 high