quincy

Where ever I search, this seems to be a common topic, yet no solutions?

In my case, i was dx'd with celiac Oct.'10 & have been gluten-free ever since. This past Feb. the GI doc prescribed prednisone to jump start my system t accept the gluten-free diet. It certainly worked, celiac blood test numbers are improving, but during the last week of the prednisone, the pain in left side, below (not under) rib cage reared its ugly head. Since then i've had a CT & was tested for H-pylori...both not showing anything significant.

On the plus side, I feel / look much better & have gained 15 lbs.

But this darn pain just wont go away!

There has to be an answer somewhere so we can all start feeling better?

RJ

hey RJ. is the pain in LLQ (lower left quadrant) how you initially presented with symptoms for celiac? I was hoping Dennis would add to my question about what he makes of this issue. My celiac pain was more like classic gallbladder pain up near my right rib. so this llq pain really came out of nowhere. I tested negative for h pylori, giarda, but only a biopsy through colonoscopy can determine if it's microscopic colitis. have you had the colonoscopy in addition to the ct? I have to go for the c'scope soon. apparently microscopic colitis and celiac are common pairings....

the ct scan concluded that the thickening was consistent with diffuse colitis which means that something I ate or have been eating caused the inflammation. It could have been the advil I was taking for back pain, or it could have been the prilosec that I re started due to bad reflux.

Thank you to everyone who replied to my call for help with such empathy and support. You guys are amazing. WOW

As of today, I have officially taken a sick leave from work leaving my return date open ended right now.

It feels very odd to give in to this as I do love my job, but I am hoping in the long run this will be time well spent. I feel very fortunate to have this opportunity and such a supportive family behind me - with only the odd pooh pooher here and there LOL

Here's to getting on top of this annoying disease and getting our lives back!!!

Thanks again to everyone!!

:)

its great to hear of your decision and that you are able to swing the short term disability. Looking back I wish I had done the same because I was barely hanging on getting up at 6 am every day when my body was aching constantly. Good for you !!

I recently, two weeks ago, started taking Digest Gold. It may be my imagination but it seems to be causing roaring heartburn and really irritating my hiatal hernia which I rarely notice. I tried skipping the dinner dose but do not see a real difference.

My non-celiac issues: Hiatal hernia, GERD, and history of ulcers, no GB.

Anyone else getting heartburn from digestive enzymes? Not sure if it is unrelated or not.

Definitely, I just started to take enzymes again after a relapse and I had mad heartburn last night. It's best to take it after you have a few bites to eat first.

last night it was so bad I took two zantac 75's and then chewed on some tums and it finally subsided. It takes some getting used to at first...

Hi Quincy:

I know exactly what you mean when you say barely made it through the year. I decided to take time off when |I would look at people and not even recognize them any more my brain fog was so bad and memory loss so impacted. The stomach stuff I can manage as bad as it gets - but the neurological symptoms - they are what is doing me in.

yes I do have short term as well as long term disablity. (thank goodness)

as for the MC - this was diagnosed initially as ulcerative colitis as i was in hospital so sick with major weight loss, unable to eat very high white blood count and major blood in stool. The first set of test results from the colonoscopy came in as UC, however in a year when I still had symptoms and the medication was no longer working - my GI did an other scope and this time biopsy confirmed microscopic/collagenous colitis. He prescribed entocort for me and it works amazing. It put my MC into remission and now it only flares occasionally at which time I go back on it until it is under control again. the way I tell the difference between celiac or MC is more where my pain is - my colitis is more in the lower abdomen as it affects mainly the large intestine and my celiac causes more pain for me in my upper stomach. Also the D from MC for me is complete liquid and from gluten for me it is just very very loose. (Sorry to be descriptive and gross here) MC from what I understand usually does not have blood in the stool. Someone else sent me a link for microscopic colitis too which you should check out. My GI said it often goes hand in hand with celiac - so if you are suspicious at all you would definitely be at risk- ask your GI for a colonoscopy.

Sorry for the lengthy response, but hopefully this helps a little with the MC.

Thanks for the advice around time off work and around going dairy free - I will do this and- I am leaning closer and closer to admitting it may be time to deal with my health once adn for all and get the rest and recovery I need.

All the best~

Sunny

thanks for the info. I also can tell when I got gluten or colitis cause the pain is higher up in abdomen with celiac. I just joined the MC forum and they have been great over there.

I have never had a problem with severe weight loss and D or bloody D. so not sure if this would be CC or LC at all.

I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?

I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.

I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.

I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.

Am I a wimp or are there others there like me?

Thanks!!!

Great post/question Sunnydayz,

I was diagnosed last year at age 48 and I only took off about a week after I found out. But I wound up taking more sick days and barely, I mean barely, got through till June when school let out. Luckily I work for school district and I had alot of sick days built up over the years that I never used.

Looking back, I was so out of it in every way I wanted to just hospitalize myself somewhere,anywhere. So no, you are NOT a wimp. It's actually a smart idea if you can swing it. Do you have short term disability at your job where you can do that? You need time to heal and the added stress of figuring out what foods to bring to work etc is just added stress.

I have suspected MC myself for awhile though I am not sure. can you address that in this thread or send me a PM to tell me how/when you found out about the MC, symptoms, scopes etc?

get well,,, and stay away for ALL dairy!!! look on all your labels make sure there is no milk or dairy or buttermilk in any of your gluten-free flour mixes for pancakes etc. find only dairy/casein free processed foods. it will save you alot of bathroom time .

quincy, Please let us know how the tests turn out.

How long have you been gluten-free? What types of enzymes are/were you taking?

I had some issues with fat digestion a few weeks back, but apparently that was at least partially caused by some gluten that snuck its way into my diet. I have been chatting with some others and hypothesizing that fat digestion problems are actually caused by continued inflammation - which could be caused by either continued trace gluten exposure OR by some other food allergen causing continuous inflammation.

I am wondering if you are constantly getting some trace amounts of gluten as well? I have been looking on some other websites and finding lots of products I thought were "safe" actually test positive for Gluten..... :-/

Yes Deezer, I thought I was getting gluten from a new source. I was convinced my recent ttg reading would have crept up but it came back negative again. I have been gluten-free since dx last year april 21st.

my functional medicine internist thinks my gallbladder is not working which would add to my fat intolerance/malabsorption. I was taking DigestZymeV by Ortho molecular which you can only get through a fm doc or nutritionist. Once the stool analysis is done I will be going on that and a gallbladder/liver cleanser by designs for health called LV/GB complex. Ox Bile is in both of them as well as the pancreatic enzymes.

if you do a search on celiac and gallbladder disease you will get alot of hits and alot of information. Some are theorizing that many un diagnosed celiacs often present with gallbladder disease first because the CCK that causes the gallbladder to contract when fat and protein are present is secreted in the duodenal mucosa, which as we know is damaged in us w celiac disease. It's interesting because back in 1995 I wound up in the hospital for 3 days with pancreatitis after eating a high fat meal. No one suspected gb disease or celiac, they just did a ct scan to see if the pancreas looked ok. All of this is connected obviously.

Posters in this thread: How are you doing? Did you find anything to help your fat absorption issues? Have you tried enzymes?

We have some new research: 1 out of 3 Celiacs in a small-scale study had pancreatic insufficiency and improved with enzymes - eventually not even needing the enzymes any more

Open Original Shared Link

Here's one more: "We conclude that a mild/moderate pancreatic insufficiency is quite frequent in celiacs, but that it may be completely independent of nutritional status"

Open Original Shared Link

ever since I stopped taking the digestive enzymes my situation has deteriorated again. back to loose bowels again after months of bathroom bliss. going to restart enzymes once the stool specimen goes off for testing again...

I would like to think that the pain in my abdomen is my intestines healing. I have never had it before the last couple of weeks. I have been gluten free since 1/17/11, except for a few mistakes. Above my belly button, below my sternum. I hope that is what it is. It comes and goes. It ususally goes after I do. sorry for TMI. Any opinions?

Hi Debbie B,

the location of your pain is exactly where my pain was that led me to the endoscopy which led to my diagnosis. The biopsies showed no barretts or h pylori but alot of inflammation of the lower esophagus where it meets the stomach. I could press in the spot and feel pain. I also had a slight hiatal hernia. All this inflammation extended to the duodenum. When the villi are blunted and intestines inflamed, perhaps the gall bladder is sluggish and your fat digestion isn't happening, and pieces of undigested food and fat are passing into large colon, it just makes for big bacterial overgrowth festival down there.

the key is patience to allow this whole chain reaction of bad symptoms to undo themselves. However, make sure all your tests are being done, stool, endo, colonscopy (mine is next month), blood work to determine other intolerances as well as vitamin deficiencies.... It's alot I know, but if you had years of undetected celiac and perhaps gall bladder malfuncion your best bet is to stop any proton pump inhibitors and get on a good digestive enzyme that has the ox bile in it to assist fat digestion. and no dairy for awhile!!

The other day I had red skin splotches all over my body. Specifically in area's that were once scarred or damaged in some way. Like my tattoo I have turned all red.

I was very fatigued. Next morning I woke up and feel out of bed and couldn't even get back into bed.

Not sure if this is celiac though. I was giagnosed 10 months ago and I am very carefull about my diet though I do slip from time to time. When I do slip I typically get slightly fatigued, tremors in my hands and feat and tingling fingers. Lateley, seems to be getting worse though because I had a beer and had an ear rash for a week which was unusual because it was always on my butocks that the rashes developed.

Anyhow, I don't think I ate any gluten that day and if I did it couldn't of been that much because there was nothing accept maybe a taco which should of been gluten free according to their web site. Was this Celiac....seems that it could be Aenemia...havn't had a chance to re-up my vitamin supply lately.

It sucked. I was in bed the whole day. Could barely move.

isnt' Rosacea a red blotchy skin condition? I don't know much about it but another poster said she had it from bacterial overgrowth... maybe check out that lead to see? just guessing here based on your recent diagnosis....

I go to the Celiac Center at Columbia and see Dr. Lewis there. I think highly of her. I had the hydrogen breath test to make sure I did not have bacterial overgrowth in the intestines, which causes other problems, including roseaca, which I also have. I have not had other testing for intolerances but think it is possible I have others. I did visit a nutritionist (not the one at Columbia who is very good) who was not up on gluten free at all (she gave me literature for the Diabetic Asso that was ancient and said that buckwheat was a gluten grain). She gave me a test where I blew into a tube and said, there! you don't have any intolerances. I asked, ' shouldn't I have eaten the suspect food to make the test valid?" YES....

I will lookin into L Glutamine. Is that an amino acid?

L-Glutamin is an amino acid yes. Do some inquiry first before just taking it, maybe ask Dr. Lewis. I go to Dr. Tennyson at Columbia, but I did not have the hydrogen breath test. What did you do for the bacterial overgrowth?

I was given the bone density test last June and it came back with osteopenia on a 48 yo male...! I also had severe Vitamin D deficiency.

what did Lewis recommend for the bacterial overgrowth? I have been taking probiotics but recently I lapsed on my strict dietary standards and started eating cheese and drinking wine and some dairy and boy have I paid the price with increased bathrooms visits and what they think might be colitis of some kind.... oy.

I wanted to do the breath test at Columbia for lactose intolerance but they didn't push it cause they said it was a 3 or 4 hour thing, but that must be different than the hydrogen breath test I assume?

I am not sure this is the right spot on the boards but I just had my first repeat biopsy. I was diagnosed 2 years and 4 months ago and have been completely gluten-free since then. I have a Marsh 2 result on a recent biopsy which means there is still some villi blunting. This doesn't surprise me since I am still lactose intolerant. I will be seeing my doctor but I wonder if anyone knows whether this is okay at this point....should I have healed to the point of having Marsh 1 or 0? I probably had celiac my entire life but wasn't diagnosed until my early 50s.

My understanding is that the older we are the longer it takes to heal,especially if you had significant damage. I was diagnosed last year and I am still lactose intolerant. Have you had any other tests besides a scope? My concerns are that I have other intolerances that no seems too eager to investigate.

I go to celiac doctor in NYC,do you mind me asking who you see and what tests you have had besides the endoscopy and blood work?

PS I have heard that L Glutamine is supposed to help repair damaged intestinal tissue

Thank you for responding

I have still been eating dairy in the form of yogurt and cheese. I also have tried some gluten free products. In particular I eat an 'enjoy life sunbutter bar everyday'. I have been eating a fair amount of rice and corn chips too.

I already knew msg, aspartame and any vegetable with a skin( peas,corn,etc) cause me great pain. I gave those up months ago before I knew I had celiac.

I haven't called the dr who did the endoscopy. He has been away so I've been dealing with my family dr. I waited until this past Friday to even get checked. I'm waiting on xray and ultrasound reports. I know it sounds silly but I hate to call any dr because I've always been told "it's just your bowels, nothing serious" Or " it's ibs and all in your head". I guess they were wrong but after over a decade of being told those things you feel like your crazy.

How do I figure out what might be hurting me?

T.h. How did you figure out that it was sugar cane that was effecting you?

Can they test me for these things?

I am so cOnfused and getting quite distraught about all this.

the only cheese I was advised to try was Cabot's 75% fat free yellow cheddar. Even that made me sick. I can eat corn chips now w no problem but anything too oily or fatty my system just could not handle at first. I would eliminate ALL dairy and chips right now, no processed snacks, just basic lean protein and soft veggies like cooked carrots. if you have folds and severe damage your small intestine cannot digest heavy or fatty foods for awhile. I would stick with lightly grilled chicken breast, some white or brown rice, eggs perhaps if you tolerate them and soups and potatoes not too much butter. I would also suggest you get a good nutritionist to advise you based on the endoscopy. each person is different, I cannot even tolerate lactose free dairy so I just stay away or else I react as if it was gluten.

HI,

I am not sure if this is normal or if anyone has a similar experience but I am I would love to figure out whats going on.

I went gluten free 13 days ago after an endoscopy. For the last 9 days I have had worse abdominal pain than I have ever had!!! It seems to be in the same place as it has been for 18 years - my upper left side, and radiates to my left chest, shoulder and back. But it is much always there now and worse!! I went to my family dr and am going for an ultasound and bloodwork but I am very confused. I thought I was supposed to get better now that I know what is wrong not worse. I have been very strict about eating gluten free.

your profile says you have severe damage so I hope that you are off ALL dairy. make sure all of your products are dairy free. I was worse after going gluten free and my pain was on my right side and my rib cage in the back. You must also have your bone density checked to make sure you do not have osteopenia or osteoperosis.

your vitamin D levels must be checked as well you might need to be on high doses of D, B6 B12 etc. based on your description of biopsy you are probably vitamin deficient as well as lactose/dairy intolerant . go easy on all processed foods too. Everything I ate just made me sick. it took me 5 months to start to feel close to better but it is a long process....

heal well.

That is where my pain first began last year before my scope. I thought it was my GB and want on a bread and pasta diet to quiet my GB down! little did I realize I went on an unintended gluten challenge! have you had a recent scope? Mine showed significant irritation at the base of esophagus where meets stomach, hiatal hernia causes the acids to come up into esophagus and can cause tenderness in that spot. this is all conjecture on my part.

I have also heard that some can have bile salts empty into intestines and cause considerable pain, especially if you have GB removed.

have you just been diagnosed w celiac? how long on gluten free diet? I found digestive enzymes very helpful. after i began to heal I stopped taking them but I have had recent problems and am thinking of restarting...

Hello everyone

I was diagnosed by blood test and then by biopsy in October 2010. I have been gluten free since then and made a few mistakes, but can say since at least February 2011, even cross contamination would be hard, I am exceptionally careful. I continue to have the following problems:

1. Exceptional, exceptional fatigue to the point of collapse and can barely walk up the road sometimes.

2. Pains in my calves

3. Difficulty walking as a result of the fatigue and my feet drag on the floor.

4. Tingling at the back of my head

5. Dizziness (turning to vertigo sometimes).

6. Symptoms all made worse by physical activity.

7. A sort of weird collapsy think I get sometimes (though I don't collapse), but it's like the brain fog is so bad it's going to burst out of my head.

Strangely enough, in February, I felt fabulous and then all the above symptoms came back again, out of nowhere.

My B12 levels etc are all good. I had my biopsy repeated yesterday and whilst I don't have the formal results yet, the Doctor said everything was "looking fine and nice and healthy".

I do drink a bit too much (the initial symptoms leading to the diagnosis of Celiac Disease came after a few days of heavy drinking). I smoke too. I have a very stressful job.

Can my symptoms STILL be as a result of my diagnosis and if so, why did I feel great in February? Can this still be as a result of being glutened for years (assuming it was years)? How long will it take to go away and why do I still feel like this if my endoscopy said my insides looked good?

I really am feeling so desperate and tearful. I don't know how much longer I can go on like this for and in my darkest days I wish I could just die in my sleep.

Please help me.

Thank you.

gosh I am so sorry to hear how bad you are feeling. I have been there too, the part about just passing in my sleep or at least staying asleep to not have to deal with the array of symptoms. I think that is what is so bothersome is that it's not just a stomach ache or D, its the dizziness, anxiety, depression etc.

many others on this forum have been to hell and back so I am sure they can speak from greater experience than I, but it took months for me to recover and there are many residual issues that need to be worked through as a result of gluten poisoning

many respondents will soon ask the question I am asking: what are you eating? makeup products, handsoaps etc. all of these things add up. have you changed all pots and pans, wooden cutting boards, spoons. check your shampoo, your toothpaste. Is your B vitamins and vitamin D levels ok? vitamin D is essential for recovery IMHO. make sure your Vit D levels are in normal range. I don't think smoking and drinking helps. go with gluten free beverages etc. I wouldn't even trust potato vodka. I have had gluten-free vodka from sweeden but I forget the brand. not something I do much at all.

hang in there. It WILL get better......

What I was trying to explain is that if you react to oats there is a chance you will react to ALL Bob's Red Mill products because they are processed with oats. That is the case for me as well as for at least one other member here. We cannot use any BRM products becasue of the oat cc.

Hi GFM. I didn't know that all BRM flours are processed where the oats are processed. Good to know; I thought for some reason their oat processing was completely separate. I will have to remember that. I used BRM corn meal to make muffins and YUCK, what a bad response I had.

I also remember that right after going gluten-free I reacted to ALL processed foods, so the best thing was to stick with rice, veggies, meat and chicken. very simple....

Hi John,

I have to admit I have been experimenting with dairy a little lately too. Turns out it was a mistake for me too. Usually I eat only Daiya GFCFSF cheese shreds. But I went and got some real cheese last weekend and ate it one day. Not a great idea, I hardly slept for 2 days. Finally got some sleep last night though. That's what dairy does to me if my gut is at all messed up, it wakes me up like I am on speed or something. And my gut was somewhat messed up because I sat in a pizza place with some friends while they ate pizza a weekend before. Got me good and sick too. All I ate was a pear.

Well, other than that, I eat mostly meat and veggies, nuts (except walnuts) and fruit. No dairy other than my recent experiment. I don't drink coffee or tea. I do drink Pepsi sometimes. I eat brown rice tortillas from Food for Life or Trader Joes. I do eat Larabars, and Food should Taste Good chips. I make guacamole with Hellman's canola oil cholesterol free mayo too. It is soy free.

Lately I have been frying onions and mushrooms and then adding some okra pods and brussel sprouts. I add some garlic powder, iodized salt, pepper, and some dried herbs. Add some meat or eggs and good to go. The same thing works good with green beans and peas.

I also have a pile of pre-cooked hamburger patties in the fridge and I eat those plain and cold with just some salt on them. I also eat eggs with veggies or in wraps with lettuce, mayo or guacamole etc.

I eat peanuts including peanut butter as long as it is natural or an organic soy-free version. And I eat Corn Thins and Lundberg rice cakes (with peanut butter ).

I usually have apples, oranges, and bananas around to eat.

I like sweet potatos in soups or nuked for 10 minutes. A little olive oil and some brown sugar on them and they are quite a treat. I have been trying to think of other veggies that would be ok for me lately. I am considering chopping up sweet potatos in little chunks and frying them with the green beans and peas. I also got some Bob's Red Mill buckwheat groats recently and am thinking of trying them in a veggie mixture.

I get canned fish sometimes because its cheaper and use it in veggie mixtures or wraps. Lots of canned fish has soy tho so watch out for that.

I do use Tempt hemp milk sometimes. I sometimes make hot cereal or corn grits and add it to that. Sometimes I make Bob's Red Mill Mighty Tasty gluten-free Hot Cereal too. I drink mostly plain water.

I drink wine but I avoid chardonays. Chardonays are sometimes given added flavor by throwing in staves from used whiskey barrels. Rum is generally ok and potato vodka.

I have made microwave peanut brittle in the past, you might like to try that. You can make lots of versions by adding all kinds of nuts, seeds, dried fruit, whatever your thinker can figure to it instead of just peanuts. You can actually make it a healthy snack. Spread it out on a flat pan with parchment paper then cut into chunks when cooled. Some people make pumpkin bars and such. I have to admit I am a lazy cook and haven't tried this in a while.

Lonewolf posted a recipe for microwave rolls a few years ago. I couldn't find the thread but seems like it was:

3 1/2 tablespoons gluten-free flours

1 egg

a pinch of salt

a 1/2 teaspoon of baking powder

a 1/2 teaspoon of chocolate powder or molasses (for color)

Nuke till it glows or preferably 90 seconds in a tall cup or bowl.

When I was making these I would cut them in half horizontally and then toast each half on the gas burner. Been quite a while since I did these tho. Something to try?

I work at home but if I go to a meeting I take a Larabar and a banana and orange or apple. I buy Planters peanuts sometimes in those little bags they sell too. The honey roasted or the plain salted kinds.

Ok, so I bought some prickly pears last weekend and am going to try them too. They say you should burn the thorns off in a flame. Sounds fun! My sister in New Mexico sent me this link about how to eat them.

Open Original Shared Link

I am going to try some of your recommendations. thank you. I like the idea of the cold burgers with salt. I would imagine you use at least 85% or better for the ground beef. I really empathize with you about the cheese and watching friends eat pizza. I live vicariously alot when I watch people eat chocolate layer cake and pizza etc.

let us know how the prickly pear dish goes. sounds dangerous to me haha but you can be the test case....

My son and I were diagnosed with gluten intolerance about a year ago. His symptom is eczema; mine is intestinal trouble. I have been very strict since that time, rarely eating out, preparing all our meals at home, eating only foods that I have checked and made sure were gluten free. Our symptoms cleared up and we have been great, until . . . about six weeks ago. My son has developed his tell-tale eczema (and bad behavior) and my intestines are problematic again. This happens to coincide with my adding a new element to our diet: Baking gluten-free bread and muffins with flours other than almond flour, which I used exclusively until about mid-March. The flours I buy come from companies that claim certified gluten free: Bob's Red Mill, Nuts Online, and Arrowhead Mills. The "new" flours I had never used until the symptoms began are sorghum, millet, sweet rice, and tapioca starch. I use xanthan gum in the bread but not the muffins.

I am wondering if someone can give me some clues as to what might be causing our symptoms. We have not eaten out in at least three weeks. I cook with mainly whole foods, and the brands of canned goods/etc. are all things I have been using since we went gluten-free a year ago--they didn't trouble us before. Help!

Thank you.

Despite the gluten free nature of flours you can still react to them. are you using oats as well? some celiacs/gluten sensitive people cannot tolerate gluten-free oats or gluten-free oat flour.

not sure what is going on but i have some kind of functional condition where working out, lifting and doing certain types of exercise and even sneezing cause spasms in my esophagus and stomach and make me feel very uncomfortable after eating...even when i dont eat the activity will cause burping. I dont have GERD or acid reflux and had an endoscopy, capsule endoscopy, colonoscopy and everything was negative. im so healthy now and my diet is excellent but i just cant figure out what is causing this upper gI problem. its somewhat debilitating since I cant work out and lift weights or play certain sports..i had to quit everything. i lost weight and spend most of my days sitting. i still go for walks but its not enough...i want to do more intensive workouts and build myself up again but i cant. would very much appreciate any suggestions

I am sure the endoscopy showed whether you had a hiatal hernia. if your hernia has gotten worse they might have to tighten it up ? I know that abdominal exercises really bother me both upper and lower gi

Acne (I think... hard to tell exactly) and a bit more gas than usual. It used to really cause some abdominal pain, but that has faded with time. Sheep cheese is fine these days, but I wouldn't try mroe than a few tablespoons of ricotta or milk.

I was letting a little lactaid milk creep into my diet again for my tea. I also had some cheese and yogurt and within a few weeks I had a bad bout of colitis. I just cant take dairy after years of being a milk drinker....

ringing in ears, sinus and lung congestion and worst of all the colitis problems....

Thanks everyone for all your help! I've been reading evertyhing I can get a hold of - not sure if I am getting more or less confused though!!

I thought dextrose was safe? It is listed as safe on this site and not listed unsafe on celiac.ca. Also not all the labels I see state something like thickener 1487 - in fact a lot don't - but I think this might be a Canadian thing? I'm reading up on Canadian labeling laws but it's still confusing! For example my canned Heinz Beans says just spices on it, and also onion powder and mustard powder - wondering if the powder could be a problem? I'll google Heinz Beans but just using that as an example.

So everything other than fruit and veg need to be double-checked?! I'll never eat again! Heh. What about things like canned tomatoes. My can says "tomatoes, tomato juice, salt, calcium chloride, may contain citric acid". Do I need to worry about that? I'm also thinking of things like dried lentils and dried or canned beans (have already read about issue of wheat kernels getting in the dried lentils and beans!), jarred spices, rice, corn tortillas, plain potato chips (that just say potatoes, oil and salt)?

Thanks! Checked the site but yeah not listed. Boo. Called the pharmacist and they couldn't see gluten listed but not sure if that is enough to be sure?? It's the non-medicinal ingreds that are listed I need to check?

We are going to get my 7yo tested, but I thought the baby was too young to be tested? He's 4 months. He is not gaining weight well so we are very suspicious now that I know I'm celiac and hoping the gluten-free diet will help him since he's exclusively breastfed.

Thanks again! This is so much to take in! Ack!

My pharmacy is clueless about gluten free ingredients of drugs so you will need to call the manufacturer. sometimes they will even ask you for the batch number on the bottle so have that handy. again, the problem with generics is that most pharmacies change generic suppliers from time to time so you always have to check on the bottle who the manufacturer is. Usually if you call the drug company's customer service they will let you speak to their pharmacist who will let you know. sometimes even THEY have to research to make sure the fillers are corn starch etc.

Hi John,

I used to have pain in my left side also, left and somewhat lower than the belly button area. I actually had that for years before going gluten-free. Then it took a while after going gluten-free for it to clear up. I figure that is part of the small intestine.

I never had an endoscopy or colonoscopy so hard to say what they would have told me about it. Probably to take some aspirin!

Anyhow, celiac damages the villi lining the small intestine so pain/inflamation in the gut is not a surprising thing IMHO. If you are getting canker sores there may be something in your diet going wrong.

yes I have a canker sore now but its not too bad. I was drinking red wine and eating cheese lately, I don't know what I was thinking!! I just wanted to feel "normal" for awhile and hang out with my gluten-eating friends I guess.

I also went back to caffein and was using lactaid milk. had some yogurt to see if I would get sick... all of the above have made me sick I guess. I got a vita mix and had made some raw veggie smoothies, so maybe I didnt wash the veggies as well as I should have. eating popcorn again.... just a big ole mess I made of myself after being on a simple diet that my body could handle....

time to go back to basics. I think I got out too far ahead of myself.......

Do you mind sharing Paul what your diet consists of? I have been reading about the Specific Carb diet and I like alot of what Elaine is saying about eating too many carbs that turn our guts into fermentation labs rather than an absorption/elimination system. If I am eating too many carbs and then adding pro biotics into the mix I think it is a recipe for way too much bacterial overgrowth. perhaps my thinking is wrong here. I would like to get the book Breaking the Vicious Cycle to read up on this more.

thanks for your concern!

Last company dinner I went to was Christmas. I called ahead. The owner of the company I worked for called ahead. That night, personal conversations with the owner of Boston's, the restaraunt our company ate at, and the server. They still poisoned me! Projectile vomiting and major D. Three days of filling the toilet with blood and laying on the couch shaking.

I'm thinking the same thing you're thinking and I prefer to be open about it. NO COMPANY DINNERS. People bust your balls about it? Good luck finding a new job; perhaps you'll get to work with people who aren't vicious sociopaths.

wow spock thats crazy shi@#t no pun intended. I was the kinda guy that just ate whatever anyone put in front of me, no need to ask any questions. now i speak to the chef or sous chef directly. if they don't understand what I am talking about cc and if they don't get the fact that I need separate everything i just pass on the meal... i have NEVER gone through what you described and God help me if I do. sorry for your lousy experience.

again, you just have to be in their face about it in a polite way, something I had to get used to. I have gone on dates with women and have turned down things they have cooked for me because it wasnt safe and those dates were the last cause some people just DONT GET IT

been with my company for 4 years now doing sales. i can still remember how terrified i was when i started and constantly feared how i would handle eating while on the road. now i dont even think twice, but i am considering taking a new job w/ another company and am afraid of having to deal with all the stuff i dealt with at my current job when i first started. the awkwardness at company dinners, having to explain over and over again to people the whole gluten thing and having people bust my balls about it. That alone is incentive enough to never leave my company but i want to advance myself and make more $. any ideas on how i can manage a new job if i were to take it?

Hey Jason, no doubt you will go through a stressful adjustment period. I have been in the same job for 8 years and want to make more money but my current job allows me sick time when I need it and its in one place so I can deal with all of these new food req's. I think you might be surprised by the new people you will meet who will have similar issues as you do. Celiac and gluten sensitivity is everywhere now it seems, or at least the awareness of it, so I think you will find alot more understanding people, even though it is a pain.

good luck in whatever you decide. you have to weigh all the pros and cons but you can just be honest about it all despite the annoyance...

Yea, the doctors never said what it was from but my doctor didn't seem concerned. If your doctor enlightens you as to what it is from let us know as I have always been curious what caused it. I suspect it was from years of inflammation but that is just a guess as they found the same thing with my heart scan.

so your scan, Ravenwood, showed a thickening of the large bowel as well? if you look at a posting by dennis429(??) in the post diagnosis section of the forum he has a topic called 'pain in lower left.' It caught my eye cause I was having same thing and he also was told his ct scan showed thickening but when they did follow up biopsy there was no indication of colitis etc. read his thread if you get a chance. the doc says it is prob due to the celiac.