Left Upper Quadrant Pain, Pain When Eating - On Gluten-Free Diet For 2 Years

[deezer]

My Celiac Diagnosis:

- Diagnosed with Celiac Disease by an off-the charts tTg (Tissue transglutaminase) test, inflammation in my duodenum, and a small intestinal biopsy.

- Symptoms were primarily neurological (tingling & numbness in my toes, fingers, head, paresthesia in my face).

- Also had upper left quadrant pain - however my GI doc said that it was from an injury and not related to the Celaic diagnosis.

- Immediately started a strict gluten-free diet. I have been very strict on the diet; rarely dine out - very careful about cross contamination. I rarely eat any packaged foods. My neurological symptoms improved, however the pain did not improve.

- Just had my blood tests drawn and for the first time my tTg is negative. My neurological symptoms are gone for the most part, however I still have pain.

My pain seems to be worsened by the following

- eating anything oily/greasy/fatty - even a little bit of olive oil

- fruit, especially on an empty stomach

- sometimes just "eating" in general (no known component of a meal that makes it worse)

- driving & sitting for long periods of time

- bowel movement (or maybe just being in the position to having a bowel movement)

Other symptoms:

- Left side feels inflamed & tender - it is hard for me to lay on my left side at night as I feel a dull ache all over that side when I do.

- Beau's lines in my thumbnails - very big horizontal bumps all the way down the nail - from top to bottom.

- Stool is often light brown, not totally pale but not dark brown either like I would "expect". Often there are a lot of gas bubbles floating out of the stool, though the stool in general sinks.

- Back pain in my middle back, and sometimes all over my back. there are painful "points" along my spine. Not sure if the back pain is related at all to the left upper quadrant pain, but since it is in the same general area, it seems like it could be referred pain.

Notes:

- It does not seem to be reflux/GERD, because it does not get worse when I lie down and I don't feel "heartburn" like symptoms.

- I (and my doctor) are at a loss as to the true cause of the pain (the doctor has switched back and forth from a musculoskeletal cause to a visceral cause)

- I also avoid eating: raw nightshade vegetables (cooked seems to be OK), red pepper, yeast, dairy, peanuts

Any ideas as to what could be the issue? I appreciate any help........

[IrishHeart]

Sounds musculokeletal. Nothing on MRI or Xray, right?

I have that mid-back and spine pain as well!! Many spots that hurt--they run along both sides of the spine, right? These are called "trigger points"-hyper irritable knots in shortened muscles---and they can refer pain to anywhere. I have rib cage pain, shin pain, you name it...

Google "trigger point and myofascial pain" and see if this fits your pain pattern. In other words, a trigger point (TrP) in a muscle in your abdomen can actually REFER pain to your back and vice versa. I know, I am loaded with them and spend hours in PT/MT trying to getting rid of them. I am in agonizing pain from them and have been since 2008. I stretch and walk and pray for relief.

What keeps them active? Well, inflammation from celiac, vitamin deficiencies, like B-12, folate, poor posture, stress, abdominal surgery, etc...since I have all those, well...

I have abdominal pain and pain in my buttocks and pelvis and hips while sitting, too. It hurts to lay on my RIGHT side. My shoulders are so bad, too. I have chronic pelvic pain and it comes from a variety of sources.

Google "pelvic floor dysfunction" and see if that fits your pain pattern.

A gluten-savvy PT and a good massage therapist can help!! Tell him/her to release your PSOAS muscles. Look for those on a muscle chart.

Do your thighs, hips hurt??

The PSOAS muscles on each side are probably tight as heck and can cause this pain in your side, ribs, low back and abdomen.

Because chronic bowel spasms from the undiagnosed celiac and muscle dysfunction go hand-in-hand, no one can tell me which one provoked the other. All I know is...the abdominal muscle pain "spread" to my buttocks, sciatic nerve, back, legs and into my back and I am a sore mess from head to toe. It's getting better since I went gluten-free..so I press on and HOPE.

Hope this helps you. I commisserate!!

[deezer]

Sounds musculokeletal. Nothing on MRI or Xray, right?

I have that mid-back and spine pain as well!! Many spots that hurt--they run along both sides of the spine, right? These are called "trigger points"-hyper irritable knots in shortened muscles---and they can refer pain to anywhere. I have rib cage pain, shin pain, you name it...

Google "trigger point and myofascial pain" and see if this fits your pain pattern. In other words, a trigger point (TrP) in a muscle in your abdomen can actually REFER pain to your back and vice versa. I know, I am loaded with them and spend hours in PT/MT trying to getting rid of them. I am in agonizing pain from them and have been since 2008. I stretch and walk and pray for relief.

What keeps them active? Well, inflammation from celiac, vitamin deficiencies, like B-12, folate, poor posture, stress, abdominal surgery, etc...since I have all those, well...

I have abdominal pain and pain in my buttocks and pelvis and hips while sitting, too. It hurts to lay on my RIGHT side. My shoulders are so bad, too. I have chronic pelvic pain and it comes from a variety of sources.

Google "pelvic floor dysfunction" and see if that fits your pain pattern.

A gluten-savvy PT and a good massage therapist can help!! Tell him/her to release your PSOAS muscles. Look for those on a muscle chart.

Do your thighs, hips hurt??

The PSOAS muscles on each side are probably tight as heck and can cause this pain in your side, ribs, low back and abdomen.

Because chronic bowel spasms from the undiagnosed celiac and muscle dysfunction go hand-in-hand, no one can tell me which one provoked the other. All I know is...the abdominal muscle pain "spread" to my buttocks, sciatic nerve, back, legs and into my back and I am a sore mess from head to toe. It's getting better since I went gluten-free..so I press on and HOPE.

Hope this helps you. I commisserate!!

I had an MRI of my thoracic spine - which came out clear. X-rays and exam showed some scoliosis, but nothing major.

YES - I do have those pain points running along both sides of the spine - many spots along my spine I can push on and feel quite a bit of pain.

Thankfully my thighs and hips do not hurt.

Thanks for your message, if you have any more tips, please do share and I pray that you have full healing SOON!

[IrishHeart]

Heal the inflammation from celiac, get some appropriate massage and/or PT (ask your doctor for a script) and check your levels of B-12, folate, iron and D.

Proper stretches, yoga, walk...

do you know a good chiropractor? get the back and pelvic muscles under control so it does not spread...

okay, that's all I got!

Hope you get relief soon!

[ravenwoodglass]

Have you tried eliminating soy?

[deezer]

Have you tried eliminating soy?

I did try eliminating Soy for awhile. I had an IGg ELISA Food Allergy test done that showed some sensitivities to a variety of foods, so I I actually eliminated ALL of the following for 3-5 months (depending on the severity of the results), and then reintroduced them, one per week. I did in general feel better after the many months I was off of all of these foods, but I really wanted to be able to reintroduce some of them, and my doctor advised me that I may be able to do so (though obviously NOT gluten)

The problem is that I think that it may have taken some time for me to have a reaction from some of the foods and I was truly unable to detect which were causing me to have malabsorption and inflammation. I have never had loose stools from Celiac that I know of - my body seems to somehow repress that - but I clearly have some malabsorption & nervous system issues despite never having loose stools.

How were you diagnosed with the Casein and Soy allergy? I am really interested to learn about good ways to test for these things and knowing how to determine if there is a problem - especially since my reaction is not an immediate one...

asparagus

barley

green beans

broccoli

cabbage

cantloupe

carrot

celery

coffee

garlic

gluten

lemon

lettuce (just ice berg and romaine)

cow's milk

peanut

black pepper

chili pepper

green pepper

red pepper

pineapple

rye

soybean

black tea

tomato

watermelon

wheat

yeast-- bakers and brewers

yogurt

didn't have for 5 months because of the yeast allergy:

all cheese

honey

many condiments

mushrooms

olives

sourdough

sugar cane

vinegar

all fruit juice

berries

dried fruit

fermented products

any breads made with yeast

[IrishHeart]

I did try eliminating Soy for awhile. I had an IGg ELISA Food Allergy test done that showed some sensitivities to a variety of foods, so I I actually eliminated ALL of the following for 3-5 months (depending on the severity of the results), and then reintroduced them, one per week. I did in general feel better after the many months I was off of all of these foods, but I really wanted to be able to reintroduce some of them, and my doctor advised me that I may be able to do so (though obviously NOT gluten)

The problem is that I think that it may have taken some time for me to have a reaction from some of the foods and I was truly unable to detect which were causing me to have malabsorption and inflammation. I have never had loose stools from Celiac that I know of - my body seems to somehow repress that - but I clearly have some malabsorption & nervous system issues despite never having loose stools.

How were you diagnosed with the Casein and Soy allergy? I am really interested to learn about good ways to test for these things and knowing how to determine if there is a problem - especially since my reaction is not an immediate one...

asparagus

barley

green beans

broccoli

cabbage

cantloupe

carrot

celery

coffee

garlic

gluten

lemon

lettuce (just ice berg and romaine)

cow's milk

peanut

black pepper

chili pepper

green pepper

red pepper

pineapple

rye

soybean

black tea

tomato

watermelon

wheat

yeast-- bakers and brewers

yogurt

didn't have for 5 months because of the yeast allergy:

all cheese

honey

many condiments

mushrooms

olives

sourdough

sugar cane

vinegar

all fruit juice

berries

dried fruit

fermented products

any breads made with yeast

Wow...those are a lot of foods to go without! Sorry!

In answer to your question.. I avoid soy because I had a high antibodies test result (IgG) to soy--but not to gluten or dairy/ casein (I was gluten-free and CF at the time)and was not even thinking celiac at the time. I was just really, really sick with a hundred symptoms and that was the test that the functional med doctor ran. Turned out to be useless as I had celiac all that time and he told me it was okay to eat gluten. Also told me that being off gluten for 5 weeks would not affect the results. Idiot!

After 8 more months going downhill, I figured it out myself.

That is why I avoid soy. I avoid dairy for now because lactose is produced in the tips of the villi and if those are blunted, them we are lactose intolerant, if only for a short time.

I hope, in time, to be able to tolerate all these foods once more.

Hope you can, too!

[deezer]

7 years later I still have this.  Wondering if anyone else can relate to this or offer any advice? :)

[deezer]

I should also mention that a recent EGD was completely clear, no signs of any damage to esophagus, stomach or small intestine.

Also, what I thought was Beau's lines wasn't really - it was from me pushing down on my nail beds.  My fingernails look mostly normal.

It's the ongoing Left Upper Quadrant pain that is still bothersome.

[knitty kitty]

deezer, 

Have you had a colonoscopy to check for diverticulitis or diverticulosis or Chrone's disease?  Pancreatic function tests?  Spleen function tests?  Gall bladder or gall stones? Kidney stones? 

What was the nature of your original injury?

Curious,

Knitty Kitty

Curiosity killed the cat but satisfaction brought it back.....

 

[cristiana]

On 1/8/2019 at 8:53 PM, deezer said:

7 years later I still have this.  Wondering if anyone else can relate to this or offer any advice?

Hi!

Yes, I get this when glutened.  I didn't see the connection at first. Sometimes it feels almost like rib pain, a painful pressure on the underside of the left ribs.

Other times it is there as well as just under my sternum.  If you google epigastric pain that's kind of the area.  It can be an ache or a burning sensation. Sometimes it goes to my back.

I had it for months in 2017/18 and eventually had my blood tested and my TTG result was in the eighties.  I just couldn't understand it as I thought I was a careful coeliac.  

The hospital then did an ultrasound to check my organs which all had normal appearances, much to my surprise.  When I asked the u/s operator why I was having pain there, she said, "You're pointing to where your stomach is".

(If you look at a picture of the epigastric area, the stomach comes up quite high into the left ribs.)

I then saw a new nutritionalist who told me to only eat what was authorised in the Coeliac UK's list of safe foods and branded food; I also gave up eating out.  I also made some changes in our kitchen (I share with three gluten eaters).

Well, after these changes and after a year, this last November, my TTG levels were finally quite low - at 14.   AND .... the LUQ pain finally disappeared.

Since November I've got badly glutened and that same pain has returned.   

Also, I had a water infection and had to take strong antibiotics which gave me reflux and burning.  That pain returned then too.

Incidentally, last spring I was also diagnosed with costochondritis and my ribs really hurt down the left side, including that area.  Driving or lifting heavy items really hurt.  What I don't know is whether the gastric problems somehow contributed to the costochondritis, or whether it would have happened anyway.  There's a website somewhere that associates the two conditions.  

A bit of a ramble, but if there are any questions do come back to me.  

 

 

[cyclinglady]

On 1/8/2019 at 12:55 PM, deezer said:

I should also mention that a recent EGD was completely clear, no signs of any damage to esophagus, stomach or small intestine.

Also, what I thought was Beau's lines wasn't really - it was from me pushing down on my nail beds.  My fingernails look mostly normal.

It's the ongoing Left Upper Quadrant pain that is still bothersome.

Did they take biopsies of the stomach besides the duodenum even though your stomach looked fine?  

[cristiana]

Sorry cyclinglady - I realise your last question is not directed at me, but I should say to deezer that in April last year while I was still experiencing LUQ pain - epigastric area and ribs - I had biopsies of the stomach and duodenum and mine were clear. 

[cyclinglady]

1 hour ago, cristiana said:

Sorry cyclinglady - I realise your last question is not directed at me, but I should say to deezer that in April last year while I was still experiencing LUQ pain - epigastric area and ribs - I had biopsies of the stomach and duodenum and mine were clear. 

That is okay!  ?. I still get stomach pain and GERD even though my celiac disease is in remission.  My last biopsy of gastritic tissue revealed autoimmune Gastritis which flares for no obvious reason.  Symptoms come and go.  Thought that might have been overlooked with Deezer.  A HIDA scan for gallbladder issues could be useful.  I had a non-functioning GB  (no stones) that would work or not work for decades until it finally failed and started to rot. 

[deezer]

Yes, biopsies of the Duodenum, Esophagus & Stomach were all normal.

[deezer]

On 1/10/2019 at 1:15 AM, knitty kitty said:

deezer, 

Have you had a colonoscopy to check for diverticulitis or diverticulosis or Chrone's disease?  Pancreatic function tests?  Spleen function tests?  Gall bladder or gall stones? Kidney stones? 

What was the nature of your original injury?

Curious,

Knitty Kitty

Curiosity killed the cat but satisfaction brought it back.....

 

I had a colonoscopy long ago, when I was first diagnosed.  Haven't had one since. 
I had antibody test for Crohn's disease - they were clear.
I have not had any pancreatic function tests other than serum lipase/amylase, though CT/Ultrasound are clear.
I have not had any Spleen function tests, what would those be?
I had an ultrasounds to look for gallstones, and none were found.  No specific gall bladder testing.
My original injury (possibly) was pressure to the left upper quadrant when installing car seats into an auto.  Could be that did something, or might not have had anything to do with it.

Thanks for your reply and help

[deezer]

7 hours ago, cristiana said:

Hi!

Yes, I get this when glutened.  I didn't see the connection at first. Sometimes it feels almost like rib pain, a painful pressure on the underside of the left ribs.

Other times it is there as well as just under my sternum.  If you google epigastric pain that's kind of the area.  It can be an ache or a burning sensation. Sometimes it goes to my back.

I had it for months in 2017/18 and eventually had my blood tested and my TTG result was in the eighties.  I just couldn't understand it as I thought I was a careful coeliac.  

The hospital then did an ultrasound to check my organs which all had normal appearances, much to my surprise.  When I asked the u/s operator why I was having pain there, she said, "You're pointing to where your stomach is".

(If you look at a picture of the epigastric area, the stomach comes up quite high into the left ribs.)

I then saw a new nutritionalist who told me to only eat what was authorised in the Coeliac UK's list of safe foods and branded food; I also gave up eating out.  I also made some changes in our kitchen (I share with three gluten eaters).

Well, after these changes and after a year, this last November, my TTG levels were finally quite low - at 14.   AND .... the LUQ pain finally disappeared.

Since November I've got badly glutened and that same pain has returned.   

Also, I had a water infection and had to take strong antibiotics which gave me reflux and burning.  That pain returned then too.

Incidentally, last spring I was also diagnosed with costochondritis and my ribs really hurt down the left side, including that area.  Driving or lifting heavy items really hurt.  What I don't know is whether the gastric problems somehow contributed to the costochondritis, or whether it would have happened anyway.  There's a website somewhere that associates the two conditions.  

A bit of a ramble, but if there are any questions do come back to me.  

 

 

@cristiana, Hi!  Thank you. This is helpful information.

My Ttg has been low, but I did have a level of DGP recently that was barely positive and suggestive of the need to follow up for refectory celiac.  However, a biopsy done near that time was totally clear.  
How did you get rid of your reflux from the antibiotics?  Funny you mention that because I too was just on antibiotics and have felt like I've had reflux and burning pain ever since.

[cristiana]

19 minutes ago, deezer said:

@cristiana, Hi!  Thank you. This is helpful information.

My Ttg has been low, but I did have a level of DGP recently that was barely positive and suggestive of the need to follow up for refectory celiac.  However, a biopsy done near that time was totally clear.  
How did you get rid of your reflux from the antibiotics?  Funny you mention that because I too was just on antibiotics and have felt like I've had reflux and burning pain ever since.

Hi deezer

I took a very short course of OTC Nexium Control 20mg.  I was desperate - I felt as if my stomach was on fire with battery acid! I then tapered off with a course of a few Ranitidine tabs.  I know there are a lot of warnings out there about such reflux meds but in my own case, I find that if I use them for a short while and taper them off very carefully they really help.

When I had months of that burning pain I got a lot of help reading posts on the Daily Strength website on reflux and gastritis and the like.  

Now the interesting thing is I have a good friend who has had almost identical symptoms.  She had very obvious gastritis when she had an endoscopy.  She took ppis for months but found no relief. She now finds she can manage her condition much better using chalk tablets, DGI licorice etc.  

I am in a bit of a hurry at the moment but will post again tomorrow with my tips for coping with the reflus and stomach pain when it is flaring.  

 

[cristiana]

Hello again Deezer

I do have varying levels of discomfort in the LUQ.  I can go days and barely notice it.  Other times when badly glutened it is burning, and at its very worse there is nausea and a bit of heartburn.  Other times it is an ache, and a feeling of fullness.

If it is getting bad I do resort to taking a minimum dose of rantidine OTC - about 75mg - first thing in the morning.   I'd then take more at lunch if I really had to - or try slippery elm, or gaviscone.  

If it is REALLY bad I find Nexium really good (like the time I was taking antibiotics) first thing in the morning but again it is OTC and no more than 20mg.   

If I felt reflux meds weren't helping after a week I would go back to my gastro/GP simply because I want to make sure that I'm doing the right thing.

When the burning pain is bad I try to keep to small regular meals (breakfast, a snack midmorning, lunch, a teatime snack, and supper) and try not to eat after 7pm so that my tum has a break of 12 hours before the next meal.  I think it is good to let it rest.

I drink camomile tea, ginger tea and what I find most helpful is boiled water, cooled down a bit with a dash of cold water.

I make a big crockpot of chicken, herbs, potatoes, carrots and chicken stock and cook it on low for about 3-4 hours so it is really falling apart when I eat it. 

I can tolerate toast, bananas and for some reason shortbread at these times.  I find green veg like cabbage, sprouts, green beans help.  

I avoid coffee, strong tea, citrus juice/fruit, chocolate, spicy and greasy food.  I don't drink anyway but I remember I did take some sparkling wine to be sociable when I had my last major flare of this and it really burned!  So I'd avoid alcohol if I did drink!  I don't have much dairy at these times but found 0 fat Greek Yoghurt with manuka honey was great.

I hope some of this helps. 

One thing I ought to add:  about 4/5 years ago I had terrible itching/ sunburn type pain that wrapped around my back, and to my left ribs.  My brother in law who is a doctor at that stage thought it was shingles without the rash (google zoster sine herpete).  A few weeks after that started I found I had the same pain that went from my sacroiliac joint on the left to the groin.  I went to see my GP who said it would be really odd to have shingles in two different sites so dismissed it.   The pain went away eventually.  In more recent months I got the  pain again (twice) and  this time a shingles rash was noted on both occasions in the left pudendal area. 

I mention this because whilst I think that my pain is gastro/costo in nature, I think shingles also has contributed.   

At times lying on my left ribs is just too painful at night.  I can remember occasions when even holding a conversation induced pain. 

I try to avoid getting cold as that can cause pain.  

(Oddly, I find the best way to nip the musculoskeletal rib pain in the bud is falling asleep in front of the telly!  I think pain causes anxiety and one braces oneself and then that causes more pain.  Relaxation really helps.)

Seems so many things have caused a perfect storm for me!  I wonder if there is any chance that you have had shingles along the way that might be affecting your ribs.  You don't have to have a visible rash, it seems.  

Anyway - if you get any different answers do post them.  You might have an answer for me! ?

 

 

 

[GFinDC]

Hi Deezer,

The link below has a drawing of the abdominal layout.  Looks like the spleen, esophagus, and stomach are the possible organ sources of your LUQ pain.

https://www.webmd.com/digestive-disorders/picture-of-the-abdomen#1

I had a stomach ulcer in the LUQ years ago.  It caused a sharp persistent pain.  It varied with eating, generally seemed to hurt less for a time after eating.  Recently I had pain in my LUQ related to taking aspirin every day.  That pain was more of a dull ache that varied somewhat with eating.

I suppose there may be other meds than can cause stomach pain.  I don't know if you might be taking any meds that could cause pain as a side affect?

Just some thots.  I hope you feel better soon.

[Whitepaw]

Gee, this sounds like gas. I was coming off a very slow 1.5 year recovery from overdoing coffee, chocolate, dairy. It snowballed and I was quite sick with reflux, stomach bloating, LUQ pain,  and could eat very little. 

I've been adding foods since spring with good results, but overdid it during the holidays.  I now have bloating and gas pains that appear all over the LUQ, and sometimes in the middle of my back.  Sometimes the pressure from inside my rib cage makes my ribs tender to the touch. Sometimes it's hard to want to eat as the gas makes me feel full.

I've had good luck with Gaviscon,  simethicone, and activated charcoal ... and finding and eliminating the goods that are causing gas.

 

[cristiana]

A very good point of Whitepaw's.  I meant to add this myself.  I notice that when I have too much iron it affects this area and I too have pain that goes around to the back.  Once I took too much iron in the morning and, seriously, the pressure around this area was immense.  I thought I'd collapse with it!