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Who's Celiac Was Triggered By Gallbladder Removal?


shellbean

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shellbean Apprentice

Did any of you first notice you had a problem with celiac right after gallbladder removal? I had my gallbladder removed Sept of last year and that is when all my problems really began. I had a huge gallstone to get stuck in the duct and they had to remove the gallbladder. I didn't have a choice at that point. The doc told me I could die if they didn't do the surgery. Well, after the surgery I have been miserable. They ran every test imaginable and couldn't figure out what was wrong with me. I researched several things including celiac disease and decided to try the diet on my own. It was a huge improvement for the first month but once I started my new less stressful job the pains and brain fogs came back. My pains feel like someone is stabbing me right at the area where the laporoscopy was done (the gallbladder area). Is that about the same area celiac pains are located? It's always in the same spot and I wasn't sure if that is how celiac disease is or if I have something else wrong. I have been gluten free for about 2 months now (trying to but I'm afraid I get contamination alot because I'm still learning). I did go off the diet last night just to test myself to see if it was just coincidence that the diet first helped me or if I stopped hurting only because I quit my stressful job and I paid the price. I guess I need to stop second guessing my self and accept the fact that I can't eat gluten. I stupidly ate a fast food meal just to test myself and all day today the pain (in the gallbladder area) has been unreal, my vision has been very blurry, my whole body aches and itches like crazy (i think I have the DH possibly), and the brain fog is horrible. I can't hardly get words out of my mouth without it sounding all jumbled. I have been having diahrea and constipation alternately too. I just want opinions to see if this is "normal" celiac problems or if this is all just related to my gallbladder removal. I know abdominal surg can trigger celiac symptoms. If any of you noticed your celiac symptoms after gallbladder removal, how was it like for you the first year after surg?


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ravenwoodglass Mentor
Did any of you first notice you had a problem with celiac right after gallbladder removal? I had my gallbladder removed Sept of last year and that is when all my problems really began. I had a huge gallstone to get stuck in the duct and they had to remove the gallbladder. I didn't have a choice at that point. The doc told me I could die if they didn't do the surgery. Well, after the surgery I have been miserable. They ran every test imaginable and couldn't figure out what was wrong with me. I researched several things including celiac disease and decided to try the diet on my own. It was a huge improvement for the first month but once I started my new less stressful job the pains and brain fogs came back. My pains feel like someone is stabbing me right at the area where the laporoscopy was done (the gallbladder area). Is that about the same area celiac pains are located? It's always in the same spot and I wasn't sure if that is how celiac disease is or if I have something else wrong. I have been gluten free for about 2 months now (trying to but I'm afraid I get contamination alot because I'm still learning). I did go off the diet last night just to test myself to see if it was just coincidence that the diet first helped me or if I stopped hurting only because I quit my stressful job and I paid the price. I guess I need to stop second guessing my self and accept the fact that I can't eat gluten. I stupidly ate a fast food meal just to test myself and all day today the pain (in the gallbladder area) has been unreal, my vision has been very blurry, my whole body aches and itches like crazy (i think I have the DH possibly), and the brain fog is horrible. I can't hardly get words out of my mouth without it sounding all jumbled. I have been having diahrea and constipation alternately too. I just want opinions to see if this is "normal" celiac problems or if this is all just related to my gallbladder removal. I know abdominal surg can trigger celiac symptoms. If any of you noticed your celiac symptoms after gallbladder removal, how was it like for you the first year after surg?

Celiac definately seems to effect the gallbladder as well as many other systems. Are you following a low fat diet in addition to the celiac diet? Please do stop challenging with the gluten but also check with your GI to make sure you are not also needing attention because of the gall bladder removal. Some people will form stones in the bile duct even after the gallbladder is removed. also what is your new job? Any chance of contamination from that? For example when newly diagnosed I went to work as a sub teacher and poisoned myself repeatedly with chalk for the board.

Guest BERNESES

I'm having my gall bladder out may 17th and have been posting about it and i KNOW that there is at least one, if not two, people on this board whose Celiac's was triggered by gall bladder removal. A bodily trauma will do it- birth, surgery, a virus. But get checked out and make sure you aren't still having problems from the surgery.

Guinevere Newbie

I had my gallbladder out a year before i realized i had celiac. but, in retrospect i feel i have had celiac most of my life and ignored it feeling that i was just having digestive problems. i did find out 1 year after going off gluten that i became lactose intolerant. giving that up made things better. i also am a vegetarian and that made a huge difference in my overall health -stop to think... what do animals eat - grains?????

lastly, probiotics sound like they're in order here. find something enteric coated. also take b vitamins, especially b12.

these are just beginning advice, there's so much more but you sound like you're in a fragile place so go easy on yourself and it would probably be a good idea to drink alot of water to help flush out toxins.

don't let the pain go too long, especially if it feels like it is getting worse.

good luck and keep posting!!

guin

judy05 Apprentice
Did any of you first notice you had a problem with celiac right after gallbladder removal? I had my gallbladder removed Sept of last year and that is when all my problems really began. I had a huge gallstone to get stuck in the duct and they had to remove the gallbladder. I didn't have a choice at that point. The doc told me I could die if they didn't do the surgery. Well, after the surgery I have been miserable. They ran every test imaginable and couldn't figure out what was wrong with me. I researched several things including celiac disease and decided to try the diet on my own. It was a huge improvement for the first month but once I started my new less stressful job the pains and brain fogs came back. My pains feel like someone is stabbing me right at the area where the laporoscopy was done (the gallbladder area). Is that about the same area celiac pains are located? It's always in the same spot and I wasn't sure if that is how celiac disease is or if I have something else wrong. I have been gluten free for about 2 months now (trying to but I'm afraid I get contamination alot because I'm still learning). I did go off the diet last night just to test myself to see if it was just coincidence that the diet first helped me or if I stopped hurting only because I quit my stressful job and I paid the price. I guess I need to stop second guessing my self and accept the fact that I can't eat gluten. I stupidly ate a fast food meal just to test myself and all day today the pain (in the gallbladder area) has been unreal, my vision has been very blurry, my whole body aches and itches like crazy (i think I have the DH possibly), and the brain fog is horrible. I can't hardly get words out of my mouth without it sounding all jumbled. I have been having diahrea and constipation alternately too. I just want opinions to see if this is "normal" celiac problems or if this is all just related to my gallbladder removal. I know abdominal surg can trigger celiac symptoms. If any of you noticed your celiac symptoms after gallbladder removal, how was it like for you the first year after surg?

My symptoms were triggered by thyroid surgery in 2000. I had pain in my gallbladder area and my dr said it had to come out. When I saw the surgeon he did a HIDA scan and it showed that the GB was normal. My GI doc encouraged me to go on a gluten-free diet which helped but the pain continued. He treated me with Fiber Pills

(Citracel) and said the pain was from "gas" in the intestine, which he said a lot of us have. The pain does eventually go away and the fiber is good for diarrhea and constipation. I have had a lot of the same problems as you and I didn't feel a whole lot better until I gave up Dairy. The only time the pain comes back is if I get contaminated. The pain starts on the right side and radiates around to the back. Please stay on the diet, take some fiber, give up dairy and you will soon be feeling much better. 2 months really isn't long enough for some of us who have been sick for a long time, I think it was 8-9 months for me, everyone is different. These are normal celiac symptoms, hang in there it does get better!

shellbean Apprentice

Thanks so much for the advice. I am going to hang in with the diet. I know I don't have a choice now. :( I hate to say "I'm glad I'm not alone" because i don't wish this on ANY one but it is so nice to know I'm not imagining what I am feeling and that so many others are experiencing this and that I have a place to go to talk. My job is in accounting at a company that works out of an old building so there is no telling what I could be contaminating myself with (forgive the bad spelling--brain fog!! :lol: ) I have to still learn what else has gluten in it besides food too. Like shampoos etc. but I guess it just takes some time. My doc did run another ultrasound to see if more stones formed but they didn't find any. They did a cat scan to make sure nothing was damaged during the surgery and all looked okay. I have had a problem with blockages in the large intestine and they told me the bowel seems to get "hung up" right around the surgery sight. Maybe that is part of the pains. I will definitely get some fiber supplements (I KNOW I need that) and I'll try going low fat again (which I was on when I had the surgery). I will stop the dairy....oh so hard.....:(...and see what happens. Since BM trouble is involved those seem to be the best remedies. What are probiotics? I feel I have had celiac my whole life too because growing up, I had alot of trouble with the symptoms they say children with celiac have. I'm going to a seminar next weekend where a doc that specializes in celiac disease is giving at a local hospital so maybe I'll gain more insight there too. And one last question for the women.......when my time of the month hits, I am in so much agony, almost like getting gluttened. Does that happen to you too? What is a good remedy to help with that? Thanks again for the help. You all are the best!!!! :)

judy05 Apprentice
Thanks so much for the advice. I am going to hang in with the diet. I know I don't have a choice now. :( I hate to say "I'm glad I'm not alone" because i don't wish this on ANY one but it is so nice to know I'm not imagining what I am feeling and that so many others are experiencing this and that I have a place to go to talk. My job is in accounting at a company that works out of an old building so there is no telling what I could be contaminating myself with (forgive the bad spelling--brain fog!! :lol: ) I have to still learn what else has gluten in it besides food too. Like shampoos etc. but I guess it just takes some time. My doc did run another ultrasound to see if more stones formed but they didn't find any. They did a cat scan to make sure nothing was damaged during the surgery and all looked okay. I have had a problem with blockages in the large intestine and they told me the bowel seems to get "hung up" right around the surgery sight. Maybe that is part of the pains. I will definitely get some fiber supplements (I KNOW I need that) and I'll try going low fat again (which I was on when I had the surgery). I will stop the dairy....oh so hard.....:(...and see what happens. Since BM trouble is involved those seem to be the best remedies. What are probiotics? I feel I have had celiac my whole life too because growing up, I had alot of trouble with the symptoms they say children with celiac have. I'm going to a seminar next weekend where a doc that specializes in celiac disease is giving at a local hospital so maybe I'll gain more insight there too. And one last question for the women.......when my time of the month hits, I am in so much agony, almost like getting gluttened. Does that happen to you too? What is a good remedy to help with that? Thanks again for the help. You all are the best!!!! :)

I'm past menopause so I can't relate to that. I do know that when I was pregnant I vomited every day for 9months. i only gained 14 pounds and my little girl weighed in at ten pounds, had a lot of heartburn too, it now makes sense to me. We're all still learning, I just learned tonight that drywall paste and dust are not gluten free and I have been making myself sick for the last two weeks. This is a great board, we're all in this together. Just remember Citracel fiber tabs are gluten-free but the powder isn't. Good luck!


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shellbean Apprentice
I just learned tonight that drywall paste and dust are not gluten free and I have been making myself sick for the last two weeks.

Oh boy. So things that have gluten like that can affect you even though it's not entering your body? I was thinking only stuff you ate or things like lotions or makeup that stays on your skin for a period of time, or things you mix with your saliva (like envelopes) were the only hazzards. And the learning continues......:blink::) This is getting tougher by the minute!! :lol:

nogluten- Newbie

My stomach seemed to get much more sensitive after having the gallbladder removed, but i also think i've always had celiac.

Guest BERNESES
For example when newly diagnosed I went to work as a sub teacher and poisoned myself repeatedly with chalk for the board.

Are you serious? I mean, I'm sure you are, but there'ss gluten in chalk???????? I teach two nights a week and we have a chalkboard.....and I always feel nauseous after class. That's crazy!

Shellbean- my symptoms definitely feel worse around the time I get my period. I don't know why that is, but I've heard other people say it too.

Tthe gluten free lif has a long learning curve, but it's well worth it. And the people on this board are so wonderful and knowledgeable, it helps so much to have other people in your position.

ravenwoodglass Mentor
Are you serious? I mean, I'm sure you are, but there'ss gluten in chalk???????? I teach two nights a week and we have a chalkboard.....and I always feel nauseous after class. That's crazy!

Shellbean- my symptoms definitely feel worse around the time I get my period. I don't know why that is, but I've heard other people say it too.

Tthe gluten free lif has a long learning curve, but it's well worth it. And the people on this board are so wonderful and knowledgeable, it helps so much to have other people in your position.

The way I got around this was by using disposable nonpowdered gloves and having someone else wipe the chalkboard down. The worst classes for me were the ones where the kids would do sentences on the board then go back to their seats and copy them with chalk covered hands on to paper to hand in. There may be non-gluten chalk out there and you may want to grab a package or two and call the manufacuror until you find one thats safe and then carry it with you. And wash, wash wash your hands. They put this poison in so much and unfortunately I think as more of us give up gluten in food it will be put into more and more stuff that they don't have to tell us it is in. Oh and be sure to watch out for the white glue that we use so much also. It's no wonder out school age kids get so much CC,

TCA Contributor

My grandmother passed last Sept, but I now think she had celiac. She had thyroid problems all her life and had it removed in the 1940's. My grandfather died in 84 and her health plummeted. She lost down to under 100 lbs, she had to have her gallbladder removed, she had D all the time and vomitting spells. She lived another 21 years, but was never really healthy again. I think the stress of losing my grandfather triggered the celiac.

Please get the pain checked out by a doctor. Celiac can cause pain, but yours sounds so centralized that it could be a problem from surgery and I'd hate for something to be missed. We all complain about doctors, but sometimes we need them!

Also - be very careful with the health and beauty supplies, especially hand lotion. If you're putting soemthing on your hands with gluten in it, then touching food, you might as well each a cheeseburger! My daughter got sooo sick from Curel lotion until we figured out what it was.

jaten Enthusiast

I've been reading this thread with interest, although it doesn't fit my circumstances. I was diagnosed with Celiac in Dec '05. I just had my gallbladder removed earlier this week. I didn't have stones, my gallbladder just didn't function at all...0%. In my case, the Celiac seems to have triggered the lack of gallbladder function since the damaged small intestine didn't release the enzyme to trigger my gallbladder.

JenAnderson Rookie

I haven't had my gallbladder removed, but after my daughter was born, the Dr thought that I might have gallstones. They did an endoscopy and said that the lining of my stomach was inflamed. (they didn't go any farther than the stomach <_< . After my son was born, my celiac blew up. I was really really sick for 8 months before the Dr told me to try going gluten free.

mommida Enthusiast

From articles I have read there is a 30% higher risk for Celiacs to have gall bladder problems. Some articles say that early on in Celiac that the gall bladder does not function properly (sorry I forgot the percentage of malfunction).

I have been looking into this because I think I am actually having full blown gall bladder attacks. When you have the pain, have you touched your skin over the pain? Does it feel colder than the rest of your skin? I really don't want to have any surgery, because most people seem to say they still have problems.

L.

Guest Ang

I had my gallbladder out 8 years ago, after suffering from recurrent stomach aches since I was 14 years old. According to the surgeon, I was very atypical for gallbladder problems. Perhaps it had more to do with celiac disease, because after the surgery, I would have "ghost" pains in the same area that I had gallbladder pain. I have heard about more stones forming in the duct, but I've never followed up on this, maybe I should.

I did feel MUCH better initally after having my gallbladder removed, so I would reccommend surgery.

I have only been diagnosed with celiac for about 2 months, and started having intermittent problems at the beginning of my 3rd pregnancy (2 1/2 years ago).

I still have D occasionally, and stomach pains do get worse around that time of the month. It's like I have a constant side ache. I still have so much to learn and change about my life. I haven't even checked or really taken seriously the non-food item issue of gluten. I think I need baby steps to alter my life habits!

Does anyone know of a comprehensive list for non-food items that DO or DO NOT contain gluten?

jaten Enthusiast
From articles I have read there is a 30% higher risk for Celiacs to have gall bladder problems. Some articles say that early on in Celiac that the gall bladder does not function properly (sorry I forgot the percentage of malfunction).

Yes, and I am definitely fairly early in the Celiac diagnosis about 4 1/2 mos. I really thought hard about this and even asked the dr. "Ok, so it doesn't work now. It's not going to work any better when you take it out. I'm at 0% either way." And, I really considered that somewhere along in the intestinal healing, my gallbladder may start to function again. Three factors pushed me into the surgery. In no particular order of importance...

1- Dr. answered my above rationalization with....but by leaving a gallbladder in place that can't empty the bile you are at an extremely high risk for pancreatitis and other very serious infections.

2- Two other drs. concurred with dr. #1

3- I was having severe gallbladder attacks. The pain was excrutiating, and when it wasn't I was still extremely nauseated and running a low-grade but definite fever. "Quality of life" was extremely low.

And ...

#4 if the malfunction was Celiac-related, I was 4 1/2 mos gluten-free and still at 0%!!??!? I couldn't keep going that way for another 4 1/2 mos or 2 years or whatever might be needed.

I have been looking into this because I think I am actually having full blown gall bladder attacks. When you have the pain, have you touched your skin over the pain? Does it feel colder than the rest of your skin? I really don't want to have any surgery, because most people seem to say they still have problems.

I don't know but the rest of me was going from chills to sweats with the pain and nausea. I've talked to a lot of people who have said they wish they had done it sooner. Very few problems afterwards. When you research online (if that's what you're doing) remember, the people who continue to have problems are more likely to post than the ones who have gone their merry way pain-free.

I'm still recovering from the surgery, and I've had some significant pain in the process, including some that felt like a gallbladder attack, the knife under the ribs pain. But that is lessening each day as well. (And since I did have a knife under the ribs 4 days ago, I think that's pretty normal)

Less than a week but so far I have no second-guessing or doubts. I'll be glad to keep y'all posted. I'll be happy to pm with anyone regarding this.

shellbean Apprentice
From articles I have read there is a 30% higher risk for Celiacs to have gall bladder problems. Some articles say that early on in Celiac that the gall bladder does not function properly (sorry I forgot the percentage of malfunction).

I have been looking into this because I think I am actually having full blown gall bladder attacks. When you have the pain, have you touched your skin over the pain? Does it feel colder than the rest of your skin? I really don't want to have any surgery, because most people seem to say they still have problems.

L.

Before they removed my gallbladder, the attacks felt like I was having a heart attack. They usually hit in the middle of the night. I will never forget all the pain. It was the most horrible thing i have ever felt. When I have the sharp pains now it is very sensitive in that area to touch. It's right where the 3 small incisions are. Actually it hurts to even brush the skin softly in that area. I can't lean on anything either and if anything even touches my belly in that area it triggers the pains. What has me guessing is the docs can't figure out what is causing it. They have tested my so many times and just gave up cause they don't know what it is from. That's why I was wondering if it's coming from damaged villi? Since I'm new to the diet maybe the pains are from damage that hasn't healed yet? I don't have any insurance right now since I quit my job and the new job has a probation period so I'm a little stuck right now. I don't hurt right now so maybe it has to do with eating the gluten the other night. I finally got most of the blocked bowel out of my system too so maybe that was part of the problem too.

jaten Enthusiast
Before they removed my gallbladder, the attacks felt like I was having a heart attack. They usually hit in the middle of the night. I will never forget all the pain. It was the most horrible thing i have ever felt. When I have the sharp pains now it is very sensitive in that area to touch. It's right where the 3 small incisions are. Actually it hurts to even brush the skin softly in that area. I can't lean on anything either and if anything even touches my belly in that area it triggers the pains. What has me guessing is the docs can't figure out what is causing it. They have tested my so many times and just gave up cause they don't know what it is from. That's why I was wondering if it's coming from damaged villi? Since I'm new to the diet maybe the pains are from damage that hasn't healed yet? I don't have any insurance right now since I quit my job and the new job has a probation period so I'm a little stuck right now. I don't hurt right now so maybe it has to do with eating the gluten the other night. I finally got most of the blocked bowel out of my system too so maybe that was part of the problem too.

Barely brushing the skin and having pain sounds like nerve damage. Perhaps a nerve entrapped in a small amt of scar tissue. Disclaimer: I'm not in the medical profession. Having had injuries, however, that resulted temporarily in similar pain, that's just what came to my mind. I'd definitely get to someone who can help answer that for you.

gavinsdaddy Rookie

had my galblader out on jan.4,2006 and hemorrhoidectomy the same day.thats when i started having problems. surgen and family doc said you have ibs .family doc said its all in your head said to go see a shrink.didn't get any better went and seen a gi doc he ran test got the results on may 4 thats when i found out what was really wrong with me. off work all this time .thats the worst part being off of work.

shellbean Apprentice
had my galblader out on jan.4,2006 and hemorrhoidectomy the same day.thats when i started having problems. surgen and family doc said you have ibs .family doc said its all in your head said to go see a shrink.didn't get any better went and seen a gi doc he ran test got the results on may 4 thats when i found out what was really wrong with me. off work all this time .thats the worst part being off of work.

I was told the same things. I actually had a GI doc do the endoscopy on me after my gallbladder was removed because I was having so many problems and I specifically told him to check for celiac while he was in there and lo and behold "he forgot". He even "forgot" I had my gallbladder removed. That's when I knew I had the wrong doctor. And they call us crazy! :rolleyes: I was so tired and hurting from all the testing that I never went back to have it redone. So the only diagnosis I got was severe acid reflux, inflammed stomach lining and intestines, IBS, and the dreaded really bad case of hemorrhoids. I can't believe I just told that to the world! :lol: Oh well, I'm SURE I'm not the only one with that problem!!!! :lol: Anyone have relief advice for that one?? heehee! I'm having a very hard time being at work all day myself. I'm afraid I'll lose my new job because I am always sick and hurting. Gavinsdaddy, do you get sharp knife like pains in the area of your surgery? I think in my case jaten may be right about the nerve damage....makes sense.

gavinsdaddy Rookie

sometimes i get pains nothing real bad thou. I have had 2 colonoscopy and 2 endoscopy in less than a year.doctors aren't they great.I just hope I start feeling better soon . I think i have a good doc now.We will see thou.

  • 4 years later...
Naezer Rookie

I had my gallbladder taken out after my first and only attack in 1999. One week after I delivered my first son. The ultrasound showed "sludge" in the gallbladder and surgery was recommended if I was gong to have more kids. My GYN knew right away what it was. Said it was common post partum for women to have gallbladder issues. That was in 1999 and not diagnosed with celiac yet. 3 years passed and then the attacks started. I would get similar painful attacks just like the initial attack but why??? There is no gallbladder in there. The only thing I could track was that it would occur after I would consume some alcohol. I first time I went to the ER. The ultrasound did not show anything but the liver enzymes were elevated. I was sent home,given pain meds and told to follow up with doctor. I did eventually go to a GI doctor who thought a sphyncherotomy was in order. "It MAY help" he said. Well, I didnt know what to do, so I did nothing. After that, I had several more attacks and just rode them out at home with the help of my loving husband. They really did not come all that often so I didn't worry too much about it.

In 2004, I started having GI symptoms that lead to the celiac diagnosis in 2009. I have not had an attack since going on the gluten free diet so I thought it must have been celiac the whole time.......until now.

I am 2 years gluten freee and thought those attacks were a thing of the past until this week. WTH!!!!

I was having a few cocktails and it hit!! WOW! Same pain, same duration.

I have just moved to a new area and do not have a GI doctor yet.

There may not be any easy answer for any of us but it is good to know that we are not alone. So if anyone can shed some light on this, I would appreciate it.

  • 4 years later...
Mossy Newbie

I had my gallbladder removed and was never the same after surgery. I attributed the stomach issues to post-surgery even though doctors said that was not normal. It took 7 years after gallbladder surgery to finally be diagnosed with celiac. I absolutely believe my celiac was triggered by surgery. Looking back I would have tried some alternatives to gallbladder surgery to see if they may have worked, but I also know sometimes surgery is necessary. I am grateful to have found a GI doctor who actually listened to me and tested me for celiac (unlike other doctors who seemed to think it was in my head). 2+ years gluten free now-it's a challenge at times but sooo worth it to feel better!

  • 2 years later...
Momoftrips Newbie

I noticed my  gluten sensitivity problem started 2 yeats ago after I had my gallbladder removed.  I had to figure it out on my own what my problem was .my sister -who is a nurse practitioner -suggested to me that maybe I am allergic to gluten? I asked her what is gluten ?that was two years ago I have noticed a definite correlation between all my gastrointestinal problems starting after my gallbladder was removed.  as soon as I accidentally ingest gluten my stomach swells up so tight it feels like it will burst have a terrible pain right at the site of where my gall bladder was removed.  I'm so thankful for the site I've learned so much from all of you it is a hard road to travel to try to find things and you can eat that will not make you sick keep posting. I think it gives all of us encouragement! thank you.

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      Soy has been on our safe list for nearly 30 years, it is gluten-free. Most soy sauces do include wheat, and should be avoided. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.       In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe. Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below this level) in foods which they have labelled gluten-free, especially a USA-based company (lawsuits in the USA are far more common and easier to win in such cases), they will immediately seek to find and eliminate the source of the gluten contamination. There is a very common myth or misconception that companies don't care at all if their products test between 5-19ppm, but they definitely do because a product recall could be just around the corner should they hit the 20ppm or higher level. Many people, including myself, now have home test kits like Nima, and companies are definitely aware of this.  
    • trents
      Kathleen, I am not sure I agree with you that your son is asymptomatic with regard to his celiac disease. The horrible stomach pains you describe in your first post could be celiac symptoms as easily as they could be H. Pylori or viral infection symptoms. Yes, the social impact of having celiac disease is perhaps the most difficult dimension of the disorder to deal with. It requires thinking ahead and providing safe substitutes for snacks and party foods so that your son doesn't feel left out and singled out or different. Some of those feeling are unavoidable but they can be minimized. Dining at eateries is a huge challenge to celiacs as even when you order gluten free menu items they are often heavily cross contaminated back in the kitchen from being cooked together with wheat things or handled with the same utensils. You need to be bold in asking a lot of questions and requesting that your son's food be cooked in separate pots and pans. It's awkward at first but you get used to it. Speaking of CC (Cross Contamination), how careful you have to be with this will depend on the sensitivity level to gluten your son will demonstrate. This can be a challenge to get a handle on for those celiacs who are of the "silent" type. By "silent" is meant they are largely asymptomatic. It is common for sensitivity levels to increase over time when gluten is withdrawn from the diet as whatever tolerance we may have had to gluten when we were being exposed to it constantly may disappear. Whether or not that proves to be the case, it would be important for you to have his antibody levels checked at regular intervals (say every six months to a year) to check for compliance with the gluten free diet. And I would not worry about him touching wheat food products. It is highly unlikely that any significant exposure will occur transdermally. That would only be an issue for the most extremely sensitive subset of celiacs. Of course, you wouldn't want him getting wheat flour on his hands and then putting fingers in his mouth.  At school, you will need to pack his lunches and also have conversations with the school dietary staff to ensure his safety.  I know this all seems overwhelming right now but you are not the only parents who are having to go through this kind of thing. Celiac disease is not uncommon and thankfully there is much more public awareness about it than there was a generation ago. It can be done. It's the kind of thing that requires parents to be willing to find that extra gear of assertiveness in order to keep their child safe and to guard his/her psyche as much as possible. Count your blessings. It could be worse. He doesn't have cancer. This might be helpful in getting off to a good start with eating gluten free. Some of it may be overkill depending on how sensitive to minute levels of gluten your son is:  
    • trents
      Staci, take note of the forms of magnesium and zinc I recommended. With some of the vitamins and minerals, the formulation can be very important in how well they are absorbed. Many of the vitamin and mineral products on supermarket shelves are in a form that maximizes shelf life rather than bioavailability which, in your case, would seem to be a critical issue. And with magnesium, if you use the typical over the counter form (magnesium oxide) you may find it has a definite laxative effect (think, "milk of magnesia") simply because it isn't well absorbed and draws water into the colon. Spend some extra money and get quality vitamin and mineral products and research the issue of bioavailability. There are forum members who are knowledgeable in this area who may have recommendations. Do you have Costco stores where you live? Is Amazon available to you?
    • Kathleen JJ
      And yes, of course it's better to know and we will adjust.  It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.   I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up?    And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞
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