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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Left Upper Quadrant Pain, Pain When Eating - On Gluten-Free Diet For 2 Years

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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........

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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!! :)

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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!

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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!

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Have you tried eliminating soy?

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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

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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. :blink: 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!

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