Searching For an Answer

[sgm405]

Hi All,

I have been reading many posts here and decided to post myself.  

2019 has been a unique year for me and one in which I've dealt with some new health issues.  Ironically, the year started with me aiming to eat better and to lose weight - my goal was to get from 212 on 1/1/19 to my target weight, 180, eventually.  I lost about 5 lbs per month eating less calories (but still a healthy amount) and less late-night snacks.  By mid-July, I reached 180.  I stayed there until September, when I lost another 5 pounds despite being off of my diet and not being as disciplined.  

I've also had some joint pain in my knees when bending and bottom of the foot/metatarsalgia pain for about two months.  I've had stomach problems for years - easily upset stomach, sometimes an urgent need to go soon after eating a meal, gas, bloating, heartburn, etc.  I was diagnosed with IBS many years ago and recently with GERD.  I've felt more tired lately and have random aches and pains in my back and other places.  I've seen a neurologist who thought it was a back issue (cleared), visited two rheumatologists who both agreed it isn't RA, Lupus, etc, and my family doctor had me do a heart monitor and EKG to rule out cardiac issues.  All blood tests have been normal except for a weak positive ANA screen.  

I have a colonoscopy/EGD scheduled for a few weeks from now and am taking Pepcid prescription strength twice per day, which has helped the heartburn.  But now I have to wait to see what these tests showw.

Do my symptoms sound like possible celiac?  

[ravenwoodglass]

They sure could be celiac. I had very similiar symptoms. Keep eating a regular gluten diet until your endo is done. It would be a good idea to call and request a lab slip for a celiac panel if one hasn't already been done.  I hope you get clear answers and are feeling better soon.

[sgm405]

1 hour ago, ravenwoodglass said:

They sure could be celiac. I had very similiar symptoms. Keep eating a regular gluten diet until your endo is done. It would be a good idea to call and request a lab slip for a celiac panel if one hasn't already been done.  I hope you get clear answers and are feeling better soon.

What symptoms did you have?  I haven't done labs for celiac yet - what specifically would I need to ask for? 

Thank you!

[GFinDC]

Hi,

You should ask for the complete celiac disease panel, which includes

DGP IgA

DGP IgG

TTG-IgA

EMA IgA

Serum / total IgA

Celiac symptoms vary widely between people.  Some people have no symptoms at all (silent celiac).

I had alternating C and D,

Bloating

Gut pain,

Insomnia,

blotchy skin,

joint pain,

forgtfullness,

short temper

etc etc.

Just because you don't have some or all of these symptoms doesn't mean much though.  Some people get a skin rash instead of gut symptoms.

[sgm405]

Is weight loss pretty common?

[cyclinglady]

It depends.  Some celiacs lose weight, remain weight stable or gain weight before diagnosis.  My own weight has been pretty consistent throughout my life.  

[cyclinglady]

Just be sure if they are going to biopsy (4 to 8 biopsies) your small intestine, you need to be on a full gluten diet.  You should also get the blood tests to check for antibodies.  They can also biopsy your stomach as well which is probably what they are looking into (gastric) because of your GERD issues. 

Celiac disease is systemic.  It can impact many organs including your skin.  

My symptom before diagnosis was life-long anemia which was masked by a genetic anemia I also had.  

Keep eating gluten!  

[sgm405]

Are the blood tests you refer to the one's GFicDC mentioned or an ANA screen?  I had a weak positive ANA screen - not sure if that's relevant or not.

[Keight]

Also, get your vitamin and mineral bloods done at the same time as the Coeliac serology tests. Saves getting another blood test and you know the full extent of any malnutrition. 

[sgm405]

I'm not sure if this is related or not, but I had previously visited a rheumatologist to rule out RA, Lupus, etc.  They had me get x-rays on my feet and she told me today that it showed osteoarthritis in one of my feet, primarily my left big toe.  Possibly related? 

[cyclinglady]

32 minutes ago, sgm405 said:

I'm not sure if this is related or not, but I had previously visited a rheumatologist to rule out RA, Lupus, etc.  They had me get x-rays on my feet and she told me today that it showed osteoarthritis in one of my feet, primarily my left big toe.  Possibly related? 

Rheumatoid Arthritis (Autoimmune) can be related to celiac disease as you can develop additional autoimmune disorders.  Osteoarthritis?  Nah,  lots of people get that as they age.  Your joints just wear out.  Now, joint issues may resolve on a gluten-free diet.  It is common to have joint pain with celiac disease and other AI disorders like Crohn’s.  

[cyclinglady]

On 10/1/2019 at 10:34 AM, sgm405 said:

Are the blood tests you refer to the one's GFicDC mentioned or an ANA screen?  I had a weak positive ANA screen - not sure if that's relevant or not.

An ANA test is not used to diagnose celiac disease.   It can indicate that you might have some  autoimmune issue going on or not.    Ask your doctor for lab tests specific to celiac disease as listed by GFinDC.  

[sgm405]

On 10/3/2019 at 6:45 PM, cyclinglady said:

Rheumatoid Arthritis (Autoimmune) can be related to celiac disease as you can develop additional autoimmune disorders.  Osteoarthritis?  Nah,  lots of people get that as they age.  Your joints just wear out.  Now, joint issues may resolve on a gluten-free diet.  It is common to have joint pain with celiac disease and other AI disorders like Crohn’s.  

My feet symptoms have been pretty all over the place, but mostly it's been heel pain and metatarsalgia that gets worse with activity.  It feels like I'm just walking on bones with no padding...which is why they ordered the xrays.