Could This Be Celiac?

[motiggidy]

Hi everyone,

I am really hoping my symptoms boil down to just celiac, because I think the alternatives could be much worse. I feel really sick, yet I have no fever.

Background info:

32/M

Lifelong Soft stools, tan/yellow/orange color, sometime they hold a shape sometimes not. Sometimes with a glossy "sheen". Pungent vinegary acrid smell. I will often have to sit on the toilet for over an hour as my intestines go through their motion. Often times get bad abdominal cramping, sometimes breaking out in cold sweats just trying to wait for my intestines to spasm everything out of me. (Negative colonoscopy looking for IBD 9 years ago, diagnosed with IBS)

Diagnosed with GERD 9 years ago, but it has come and gone over the past 9 years, and mostly been gone.

Both parents have "Bowel issues"

Late puberty.

Skinny. Difficult to put on weight.

From 23andme results I am genetically HLA-DQ2.5

I have selective IgA deficiency (total IgA<15mg/dL)

4 weeks ago my red blood cells, hematocrit, and hemoglobin were all a tad low, but my iron/ferritin panel was fine.

My recent symptomology:

4 weeks ago:

dizzyness/vertigo spells (prior to this I was diagnosed with labyrinthitis one time about a year ago)

mild abdominal pain

mild chest pain (mostly left chest)

developed heart palpitations

Feel healthy overall though

3 weeks ago:

Chest pain got worse, went to ER, all heart tests normal

abdominal pain and chest pain would kind of come and go

vertigo would come and go

heart palpitations

Developed a large bumpy itchy rash on side of left calf.

Left elbow itchy rash, less bumpy than calf. Itchy left knee, no noticeable rash.

still feel fairly healthy.

2 weeks ago:

leg rash went away with topical steroid. I'm not treating elbow rash, to show doctor.

one episode of very bad incapacitating vertigo with nausea

chest and abdominal pains got very bad for a while (pain covered whole chest and abdomen).

Started to get tired very easy. Climbing stairs I normally climb was getting difficult. Fatigue.

More frequent heart palpitations

For one day taking deep breaths was painful in the chest area.

Bad indigestion, can't stop belching after certain meals. Seem to have become lactose intolerant. Often feeling of globus sensation in esophagus especially after meals. Getting more GERD.

Saw cardiologist. Says my heart is fine based on tests from my 2 ER visits about 2 weeks prior. He thinks I may have pleuresy from a viral infection. But he can not hear classic symptoms through stethoscope, and my chest pain is not "stabbing" nor is it usually worsened by breathing (both classic pleuresy symptoms).

1 week ago:

chest pain is constant and very bad. Pain now more centralized to sternum area, but covers whole chest. Pain is not much worse pressing on my chest. I think it might be stemming from my esophagus. Difficulty breathing, chest feels constricted, like someone is sitting on my chest. Abdominal pain is more prominent too, though not constant. Indigestion after every meal, globus sensation, belching, GERD. Frequent dizzyness, lightheadedness. Feel nauseous all the time. Kind of in a daze sometimes. My whole body also feels a little shaky sometime, like it is really weak. Heart reacts to everything like I am running a marathon, it seems "stressed out". So tired, so fatigued, so sick.

Today only, I started urinating a lot. Probably like 8 times. I might have a slight bladder infection? 4 weeks ago my fasting glucose was a bit low.

I have an appointment with a GI dr tomorrow. Hopefully I can schedule an endoscope asap.

Thanks for reading. I'm just hoping it "just" celiac.

-motiggidy

[Roda]

Since you said you are IgA deficient then the IgA versions of the celiac tests are useless. Make sure they order the IgG versions of tTG and deamidated gliadin peptide(DGP). If you decide to get a scope/biopsy make sure they take a minimum of 6-8 samples(someone on here posted that some celiac authorities are recommending 8-11) from different spots in the duodenum. Your symptoms certainly sound like you could have celiac. After your testing is complete, even if negative, give the diet good three month try and see how you feel. Sometimes your body reaction is the best diagnositic tool there is. Good luck and welcome.

[motiggidy]

Since you said you are IgA deficient then the IgA versions of the celiac tests are useless. Make sure they order the IgG versions of tTG and deamidated gliadin peptide(DGP). If you decide to get a scope/biopsy make sure they take a minimum of 6-8 samples(someone on here posted that some celiac authorities are recommending 8-11) from different spots in the duodenum. Your symptoms certainly sound like you could have celiac. After your testing is complete, even if negative, give the diet good three month try and see how you feel. Sometimes your body reaction is the best diagnositic tool there is. Good luck and welcome.

Thanks, that is great advice that I will bring up with my GI dr tomorrow.

Here is a bonus celiac disease related statistics problem I worked out, showing that my odds of celiac disease is about 25-37%.

Assume a population of people (say 10,000 people) with a celiac disease prevalence of 2.5% (I am in such a population, since I am HLA-DQ2.5). Thus 250 people in the population will have celiac disease. Assume this population has a prevalence of IgA deficiency of 0.2% (some sources give a bit higher higher or lower rates). Thus 20 people will be IgAD. Also assume that between 2-3% of celiac disease patients have IgA deficiency (Open Original Shared Link). Thus 5 to 7.5 out of the 250 celiac disease patients will have IgAD. Thus if you are one of the 20 people with IgAD, and 5-7.5 of you have celiac disease also, then there is a 5/20 or 7.5/20 odds that you have celiac disease.

Since I am known to be in the IgA deficient group, and I come from the HLA-DQ2.5 geneotype population, my odds of celiac are about 25-37.5%.

Of course this is just a fun exercise in surprising or counterintuitive statistical results.

-motiggidy

[T.H.]

Crossing fingers for you that it IS celiac disease, too!

One thing you may want to look up re: the chest pain: Costrochondritis

( Open Original Shared Link )

The important things to know about it is this:

It's "an inflammation of the cartilage that connects a rib to the breastbone (sternum)... Pain caused by costochondritis may mimic that of a heart attack or other heart conditions."

I had this, and in no way would I have said, at first, that it was my sternum. It felt like my heart, on the left side (can feel like the right, too). The pain radiated throughout my whole chest, even down my arm at times. It was scary as heck. I ended up in the ER thinking I was having a heart attack or something, they did all the heart tests, which came back fine. From a few I know who have had this, that's pretty common.

Being undiagnosed is also pretty common, too.

The ER doc seemed set to send me out without a diagnosis other than 'you're not gonna die from this whatever it is,' except I happened to mention to the doc that I was being tested for Crohn's disease. He started feeling in the area right where each rib connected to the sternum, and while I couldn't have said that was the most painful spot BEFORE he touched it...as he was touching it, oh MAN! That was the spot.

According to that one doctor, some people who get chronic inflammation can develop this. Getting rid of the inflammation lets this start to calm the heck down, and it just heals on it's own after a few weeks.

I have turned out to get this now whenever I am getting some low dose of gluten, or from a couple of my food allergies. It's painful, but once it heals, no trouble.

Kind of hoping this is what you have, as it'll go away after going gluten free, thankfully. Honestly, even if the GI doesn't diagnose you with celiac disease, I'd try the diet for a week or so just to see if it helps.

Good luck at the appointment!

[Fairy Dancer]

I have had similar symptoms to you (except for wieght loss and rash) for over 6 years now and although the one blood test I had for celiac was normal (no biopsy has ever been done) I have experienced improvement on the gluten free diet anyway. Previously my dizziness, vertigo and fatigue were so bad some days that I couldn't get out of bed. Several weeks after going gluten and processed foods free (I went onto a whole foods only diet with the occasional gluten free processed treat) I am now up and about slowly getting my housework done.

I still don't feel completely right but I feel much better than I did and I am still experiencing a gradual improvement in symptoms and not just physically. My anxiety levels have gone down and have almost vanished, my depression has gone, my mind is clearer than it has been for years and I'm far less irritable. Acid reflux has disappeared, bowel is much more settled (but still having the occasional off day...then again I've accidentally glutened myself a few times...its amazing what they put this stuff in including a vegetable stir fry lol) and the abdominal pain is fading and has almost gone as well. I just seem to have a bit of residual soreness rather than pain now, and that is improving too.

Oh and for the first time in years I actually wake up in the mornings without feeling like I have a massive hangover (I don't drink alcohol), especially in the last few days. It feels strange as I am so used to feeling horribly groggy in the mornings and very unwell for most of the day.

I almost feel 18 again and I'm 36 now lol.

Have the test but whatever the result it's still worth trying a gluten free diet for a while!

Hope you feel better soon.

[AVR1962]

I too have GERD, off-balance, vertigo along with the bowel issues, had many more symptoms as mine had not been caught. Lack of absorbtion of vitaimns lead to twitches and muscle spasms, memory was like I had early Alheimers. My neck was incredibly stiff, blurred vision. Docs put me thru tons of tests. Then I went off all glutens and found out my problem. I also cannot eat anything with high fructose as the off-balance and foggy thinking will come back just like it does if I have any gluten. I was dizzy every day for 5 months. Once I went to a very strict gluten-free diet all the above symptoms went away. I had not connected my heart paliptations to guten intolrance but they went away too. My taste came back. I did have to supplement with vitamins.

[Fairy Dancer]

@AVR

I had problems with pain in my neck for months until I went gluten free and that seems to have subsided as well. I thought I had just pulled a muscle that was refusing to heal or something lol but since being off the gluten it seems to have gone. I was wondering the other day if it might have been connected in some way.

[motiggidy]

@AVR

I had problems with pain in my neck for months until I went gluten free and that seems to have subsided as well. I thought I had just pulled a muscle that was refusing to heal or something lol but since being off the gluten it seems to have gone. I was wondering the other day if it might have been connected in some way.

Thanks everyone. I also have majorly sore neck, forgot to mention that.

[pain*in*my*gut]

Since you said you are IgA deficient then the IgA versions of the celiac tests are useless. Make sure they order the IgG versions of tTG and deamidated gliadin peptide(DGP). If you decide to get a scope/biopsy make sure they take a minimum of 6-8 samples(someone on here posted that some celiac authorities are recommending 8-11) from different spots in the duodenum. Your symptoms certainly sound like you could have celiac. After your testing is complete, even if negative, give the diet good three month try and see how you feel. Sometimes your body reaction is the best diagnositic tool there is. Good luck and welcome.

This, exactly! Good luck....I really hope you get some answers soon. There is nothing worse that being ill and not knowing what is wrong!

[Rocketlegs]

twitches and muscle spasms, memory was like I had early Alheimers. My neck was incredibly stiff, blurred vision.

I didn't know those were also symptoms! When I go to sleep my arms and legs jerk around and even wake me up. Bad memory has been a joke in my family for a few years, stiff neck I thought was due to computer work, my vision gets blurred off and on. I can't believe so much can be affected with this.

[beebs]

Hi everyone,

I am really hoping my symptoms boil down to just celiac, because I think the alternatives could be much worse. I feel really sick, yet I have no fever.

Background info:

32/M

Lifelong Soft stools, tan/yellow/orange color, sometime they hold a shape sometimes not. Sometimes with a glossy "sheen". Pungent vinegary acrid smell. I will often have to sit on the toilet for over an hour as my intestines go through their motion. Often times get bad abdominal cramping, sometimes breaking out in cold sweats just trying to wait for my intestines to spasm everything out of me. (Negative colonoscopy looking for IBD 9 years ago, diagnosed with IBS)

Diagnosed with GERD 9 years ago, but it has come and gone over the past 9 years, and mostly been gone.

Both parents have "Bowel issues"

Late puberty.

Skinny. Difficult to put on weight.

From 23andme results I am genetically HLA-DQ2.5

I have selective IgA deficiency (total IgA<15mg/dL)

4 weeks ago my red blood cells, hematocrit, and hemoglobin were all a tad low, but my iron/ferritin panel was fine.

My recent symptomology:

4 weeks ago:

dizzyness/vertigo spells (prior to this I was diagnosed with labyrinthitis one time about a year ago)

mild abdominal pain

mild chest pain (mostly left chest)

developed heart palpitations

Feel healthy overall though

3 weeks ago:

Chest pain got worse, went to ER, all heart tests normal

abdominal pain and chest pain would kind of come and go

vertigo would come and go

heart palpitations

Developed a large bumpy itchy rash on side of left calf.

Left elbow itchy rash, less bumpy than calf. Itchy left knee, no noticeable rash.

still feel fairly healthy.

2 weeks ago:

leg rash went away with topical steroid. I'm not treating elbow rash, to show doctor.

one episode of very bad incapacitating vertigo with nausea

chest and abdominal pains got very bad for a while (pain covered whole chest and abdomen).

Started to get tired very easy. Climbing stairs I normally climb was getting difficult. Fatigue.

More frequent heart palpitations

For one day taking deep breaths was painful in the chest area.

Bad indigestion, can't stop belching after certain meals. Seem to have become lactose intolerant. Often feeling of globus sensation in esophagus especially after meals. Getting more GERD.

Saw cardiologist. Says my heart is fine based on tests from my 2 ER visits about 2 weeks prior. He thinks I may have pleuresy from a viral infection. But he can not hear classic symptoms through stethoscope, and my chest pain is not "stabbing" nor is it usually worsened by breathing (both classic pleuresy symptoms).

1 week ago:

chest pain is constant and very bad. Pain now more centralized to sternum area, but covers whole chest. Pain is not much worse pressing on my chest. I think it might be stemming from my esophagus. Difficulty breathing, chest feels constricted, like someone is sitting on my chest. Abdominal pain is more prominent too, though not constant. Indigestion after every meal, globus sensation, belching, GERD. Frequent dizzyness, lightheadedness. Feel nauseous all the time. Kind of in a daze sometimes. My whole body also feels a little shaky sometime, like it is really weak. Heart reacts to everything like I am running a marathon, it seems "stressed out". So tired, so fatigued, so sick.

Today only, I started urinating a lot. Probably like 8 times. I might have a slight bladder infection? 4 weeks ago my fasting glucose was a bit low.

I have an appointment with a GI dr tomorrow. Hopefully I can schedule an endoscope asap.

Thanks for reading. I'm just hoping it "just" celiac.

-motiggidy

Unfortunately Celiac being an autoimmune disease means that anyone who has it is predisposed to get other autoimmune diseases. I have lots of connective tissue type issues and see a rheumy because of it. One of the things that stands out to me in your post is the constant chest pain. I get that and its pleurisy and can be related to other autoimmune diseases. I would be asking for full celiac testing especially if you have the genes, but I would also fill out this checklist and bring it to your next Drs appointment. Open Original Shared Link

Good luck.