quincy

I don't know if it qualifies as a digestive enzyme but I think it does as a probiotic, and that is Kefir. The brand I use, Lifeway, says it's 99% lactose free, so I'm thinking that's probably okay. I'm currently starting an elimination diet and dairy is off limits, but I think Kefir is okay. I guess now that I'm writing this I'd better double check with my doc. (Or if anyone out there knows the answer to that.) If you've never had it, it's like a liquidy yogurt, very lemony and a little fizzy. I use it when I take my vitamins/minerals to help them go down, but I also really like the taste. You may have to get used to is slowly.

sorry for the late response: I use an enzyme that bought through my nutritionist but you can get it online. Its called DigestzymeV by Ortho Molecular. Jarrow has a good one too if you don't want to spend as much money.

also, the probiotic I use I got from the health food store. Its called Ultra Flora Plus DF by Metagenics. Your local health food/organic store can recommend something as well I am sure. I had to introduce the probiotic slowly at first because it can cause some extra trips to the outhouse but once your body adjusts it is really a huge difference in your digestive health.

get rid of all processed foods. Only sure fire way to get rid of reflux. The body won't reflux on purely natural food items.

very true. the more "whole" unprocessed foods you eat the better.

I would do the research on Prilosec and other drugs of its class. they are not intended for long term use and can cause b12 deficiency and bacteria overgrowth over time.

To ween off correctly consult your doctor. I basically had the time release pellets in a capsule. I would open the capsule and start off by removing a few of the pellets each day. Each week I would do a bit more until I was at half the amount of pellets. Then I stayed on half a dose for a week. Slowly you can introduce an otc product like zantac 75 or something similar. Basically if you go cold turkey with that medicine you will get the rebound effect of more acid than you would normally produce and tear up your stomach and esophagus. so be careful just stopping cold turkey.

hope that helps. I am not a doctor so do the research. Most traditional doctors give that stuff out like candy and they don't monitor your use of it or advise you to stop or modify your diet... sad but true I have found.

I can definetly relate. From the age of 7 I was constantly miserable. I also can't remember a lot of my childhood. I have had a lot of cousins come up to me and ask if I remember certain things and I just can't no matter how hard remmeber them. School was really bad for me because I had social anxiety disorder with depression. It wasn't until after I went gluten free at the age of 44 that I started getting better.

There is hope and remember even eating as much gluten as you are, you still could come back negative on the tests. If you do, go gluten free anyway. You can still have an intolerance to gluten and it can cause just as bad a reaction as if you were Celiac.

Hang in there.

Yeah, I found out last year at age 48. talk about mourning a loss. After the initial shock of hearing Celiac for the first time and learning what it does to you, it all kind of came rushing at me at once. Everything suddenly made sense but it was too late to go back and live my life again without gluten...

I spent all of my childhood sick and skinny and the doctors just kept telling my mother that I was a hypochondriac. Night terrors, irrational fears, canker sores, awful cramps, tingling in my legs and arms just to name a few. To go all the way back into infancy, meningitis from chronic ear infections which should have ended me then.

The best thing is to get better, that is the only choice, either that or cry in my gluten free chicken broth... oh well. Hang in there everyone...and heal well.

My son continued to have acid reflux problems until we eliminated processed corn from his diet. He still does fine with corn on the cob. Also with corn that I sort and wash. I believe that he was having cc problems with the processed grains.

Good posts. Before diagnosis, my first symptoms several years ago was acid reflux, especially from bread and oatmeal. After being on prescribed prilosec for several years, I was able to slowly ween myself off of it as I went gluten free and my symptoms began to subside. I then thought I could eat any gluten-free item and I would be fine. Wrong. I started eating gluten-free bread and after several weeks of having bread every day, I noticed that the reflux started up again. I take a tums regular strength. or my doctor recommended zantac 75 in the evening before dinner if I am feeling my stomach is too acidic.

I should have qualified my comment by saying that I am extremely sensitive and can't eat hardly any processed foods. Kinnickinnick really does try their hardest. Their foods are certainly among the most gluten free. I'm sure that they washed the equipment very well if they spent 4 weeks at it. I just don't think that it is possible to get it clean enough for someone like me starting like that. I have contacted them about my reactions. I believe they told me that they test to 5 ppm, which is the lowest available these days. It just isn't low enough for me. I have to sort and wash all my grains.

thanks for that bit of detective work. I only eat their donuts as a treat once in awhile and I like that they are dairy/casein- free as well. I noticed for the first time (duh) that they don't have the certified endorsement on their box. So I wonder if they were to purchase new equipment (much more expensive for them) could they get even lower than 5ppm? Or is all flour just hopelessly contaminated to some degree. I am very sensitive also but perhaps not to 5ppm, hmmm interesting. Again, I was not posting to promote or attack Kinnikinnick, but their video raises questions for us Celiacs thanks!

I'm with you, Peter. That just made me think, "No wonder I reacted to Kinnikinnick's food!" How on earth could you get that big mess clean enough for the most sensitive?

I have only tried their donuts and I have not had any problems and I am extremely sensitive. Kinnikinnick is another issue that would be interesting to explore, perhaps I will give them a call about their video for their reaction to the forum members' posts and questions. or perhaps if you have been sickened by their products, you should contact them and ask them what gives.

If they are testing their products I would hope that they have pretty much cleaned their machines down to zero ppm before using them on their lines, if that is even possible w shared equipment. That is actually the heart of the question and the reason I posted that video (not to have a gotcha discussion about kinnikinnick). how well can Trader Joe's for example, package their items as gluten free or made without gluten ingredients knowing that the celiac community can react to trace amounts of gluten cc from shared equipment from companies they cannot monitor. How well can shared equipment be cleaned in a large scale food processing situation etc. etc.

There was a study that came out earlier this year showing that "shared machinery" foods have a higher chance of being CC'd with allergens than "shared facility" foods. That video is not surprising at all, and making me glad I'm moving away from eating processed foods. Ewww!

yes Skylark, I feel the same way; I would not be as alarmed if the facility has areas (hopefully well segregated) that process gluten products and other areas that are non-gluten, but the same machine, to me, is a considerable risk to me. IMHO

I couldn't get your link to work. Whether or not you need dedicated equipments seems to depend on how sensitive you are to low levels of contamination.

sorry about that. I have not posted links before. I try not to do that on forums but this was a good video clip.

this will take you to the company's "TV" site just scroll down to find the one that says "The Importance of Dedicated facilities"

hope it works this time....

An olive bar? You mean one of those places where the olives are in open bulk containers and customers help themselves and fill their own container? Holy cow! What a risk for contamination, especially if there is a salad bar nearby, like at our local grocery store.

I checked with the store and all the olives at the olive bar do not have anything containing gluten and there is no salad bar nearby to it. I don't normally buy from salad bars anymore, it's too risky for my taste and this was a one-time occasion for the holiday party I had. So I believe it was the Trader Joe's French String Beans which warns that the equipment is shared with wheat production. I have since eaten the olives and have had no problems so I won't buy that brand of frozen string beans. I just stay away from any product that says it was processed on equipment that also processes wheat or gluten ingredients. I just won't risk it.

In the beginning--and especially if there's a lot of healing to do--it's best to avoid processed foods. Natural foods are the way to go so that you can be sure that you aren't getting any contamination. The American way of life, unfortunately, has been based on processed food for such a long time, people sometimes have a difficult time adjusting to this change, but eventually you won't even miss processed foods. Many of us look at them now and practically gag--they just don't appeal to us. Also, to help heal, many celiac experts recommend L-Glutamine, which heals the gut.

Welcome to the community Jen. I was dx'd in April and I just got my latest blood work showing my antibodies close to zero, and that is just in 8 months. I also had villous atrophy but not sure it was total as yours was.

There is a lot to learn, so do alot of googling and read the blogs posted here and the topics you will learn alot. This is the place where I got most of my education on gluten, and I really still consider myself a "sophomore" when it comes to this.

Happy Healing to you!

PS. You will need a good digestive enzyme, a good probiotic, and avoid all dairy. thats also my best advice..

Before I was diagnosed, and therefore gluten-free, I had so much of the craziness many here have shared. I've been glutened twice that I know of by tiny amounts of gluten. First...I was working at a high school, and some kids had crushed cheerios right outside my door. When I went out to tell them to clean it up, a big gust of wind came up. I kept my mouth closed, but I know for sure they got into my eyes (I could feel it... ouch), and probably into my nose. Within a few hours I was doubled over on the floor, cramps, D, etc. The second time was at a restaurant (where they have a gluten-free menu, and the manager assured me they were careful). I don't have allergies, and no one else got sick from the same dish, so it wasn't food poisoning. Same thing happened.

It seems now that I'm gluten-free, my body's first and main reaction is to get the toxin OUT!

Good luck.

It seems that many of us have become quite sensitive. I just posted a new topic in the Food Labeling topic area of the forum that has a link to a video that shows how much is involved in sanitizing a machine that processes wheat. check it out and see what you think. It really raised some basic questions about the food industry and what they claim. How much gluten is too much gluten for us? I am still wondering this question, but I guess it's different for everyone...

Good news for me though Shezatrip: My latest blood work shows my Celiac antibodies (i think it's the Ttg) at 3! down from 51 in April 2010 when I was dx'd. so happy because I have been SO OCD about not ingesting any gluten.

I came across this promotional video on Kinnikinnick's website. Very effective advertisement for their company for sure, but is it heavy-handed, so to speak? Though their donuts are so good they don't have to convince me to buy their products! But do you think it is too over the top and misleading, or does it show a legitimate issue of what is going on at any given facility that claims to sanitize their lines before processing our gluten-free food?

warning though, this video-clip is just gross!

Open Original Shared Link

It was pretty good here, my roller coaster of emotions hasn't calmed quite yet, but my family is awesome!!! Thanksgiving and Christmas were at my Dad's and he is wonderful about my diet, he made roast beef for me and made sure no one touched anything until I got my plate. Your right the dessert part is tough, oh how I miss those wonderful sugar cookies made with white flour. I did make pumpkin pie though, I just didnt have a crust, and you know what....who cares the pumpkin with whip cream was fantastic. Also money is pretty tight so I just started researching cookies and cakes without flour, I have made peanut butter, peanut butter chocolate chip (these are amazing!!!!), no bake cookies, monster cookies, and a flourless chocolate cake that is pure heaven.

This holiday season was tough, and I was feeling pretty sorry for myself, you know how it is with the restricted diet and the huge lifestyle change, but everyday I feel better, I have a husband who loves me and takes care of me, four beautiful daughters, and a sweet grandson who reminds me everyday that I am loved. So here is to a new year filled with new beginnings, healthier bodies, and a whole lot of happiness!!!! We deserve it

This was my first Christmas gluten free. Being a bachelor who ate out ALOT, I used my stove for the first time. yes, it's true. My sister came up from NC and she prepped the turkey for me so all I had to do was put it in my oven. I am glad to know that my oven works.... haha. The rest of the family chowed down on stuffed turkey and the typical Italian meal before the turkey which consisted of homemade ravioli's. Oh well. I found some gluten-free ravioli for Christmas. I also cooked the turkey here for Christmas and had friends over. So in a way celiac has opened my horizons!!!

I was finally able to look into their gluten content more closely, and it seems they have updated their gluten standards to 20ppm or below, which is great. However, according to them, they do have some ingredients that are derived from gluten containing grains, although I am having a heck of a time finding out what ingredient exactly IS derived from gluten. I'm kind of curious, because if it weren't for the fact that the color is from corn, that's what I would have assumed would be the issue. I am awaiting further information from them on what ingredient is the issue.

At this point, this is what they've said, from an email they sent a few days back:

"...Some minor ingredients in these products[long list from them] are manufactured from plants that gluten-sensitive people could react to, so we are unable to state categorically that they are totally gluten-free even though they may have undetectable levels of gluten in them. The Codex guideline provides a very low threshold for gluten content. However, extremely gluten-sensitive individuals should discuss consumption of these products with their health care provider..."

Anyone have more information on this, I'd love to learn more.

This is a timely topic for me. I just recently was at TJ's and was about to buy their tomato sauce. When I looked on the back of the jar I saw the warning that the equipment used was shared with wheat containing foods. I put the bottle back.

I then went and bought their French String Beans in the frozen section. Later that evening I steamed and sauteed the beans but a few hours later started to experience my tell-tale "pangs" in under my right rib cage. I was wracking my brain to think of what it was. I then went and looked at the bag and it had the same warning as the sauce. I NEVER imagined a frozen vegetable would be sharing equipment with wheat. Joke on me for assuming anything when it comes to wheat....

thanks for this thread.... gonna read through it now completely....

I work at Home Depot and I'm usually in the garden center. My station is separated from the straw trucks by a large corral big enough to house a lot of product and still have room for customer vehicles to drive through the center. No one ever brings the straw in to me it is always picked up at the straw truck. Last Summer pre-diagnoses I spent an average of 17 days a month suffering from migraine. It isn't possible my proximity to the wheat straw truck played any role in my illness is it? I need to know because if that is the problem I will need to get a Dr's note and tell my supervisor as soon as possible.

my best guess would be that perhaps you are reacting to mold or an allergen that is in the straw. My understanding is that it is the grain kernel of wheat (someone please correct me here if inaccurate) so it doesn't seem like you would be exposed to any gluten in the sense that we understand gluten ingestion/exposure. I have a terrible grass pollen allergy which kicks in in the spring when the grass is starting to sprout.

I would to to an allergist and inquire about this as well. anyway, just some thoughts but certainly no expert here on medical issues or airbourne gluten.

Thank you so much shezatrip. I had no idea of how many are suffering. Yep, keep on smiling!!

Thanks Shezatrip for the kind words. yes, I take a powder formula recommended by my Nutritional Doctor and it helps my gut rebound. It is interesting how similar my story is to T.H.'s I am now 49 and my doctor suspects I was celiac from age 6 or 7. It's hard to know, but I remember YEARS of canker sores. my childhood was spent tolerating terrible canker sores. I just learned to cope. I was also 6'2 and 170lbs for many years as well.

My real decline came in 2006 when I began to experience terrible anxiety (more than the constant anxiety I was able to manage growing up)and depression. No one knew what was wrong with me when I began to lose circular patterns of beard all over my face and neck. It wasn't until the pain began under my rib cage (swollen small intestine)and never went away that I happened to call a GI group who's receptionist happened to have celiac. Thank GOD for her!!

She immediately told me to come in for a scope. Within 2 days I was under the scope and a week after that the results showed Marsh III. what a trip.

I was dx'd in April 2010 and went through several months of hell detoxing from gluten. I had to go on an SSRI and take klonapin for the anxiety, but I am doing ALOT better now. I really at one point thought I wasn't going to make it, I was so miserable. But I have put on weight and the dizziness has stopped as well as the night panic attacks and the arm tingling. The D has stopped but I am still lactose intolerant and have had to stop drinking milk, which I loved to do with cakes and cookies or course!

Thank God for his healing touch in my life and good friends and family to support me through this. I hope and pray you have the same.

Get well soon, it takes time but there is light at the end of the tunnel!!

I have 4 diagnosed celiacs in my family. Two of them - they are a little careful, but if their food touches gluten food, usually they have no reaction. They get the big D maybe the next day, day after, a little cramping, and that's it. So there are definitely celiacs who don't have to be as careful, at least symptom-wise. Although my father is now starting to have trouble again after 8 years gluten free, so he is trying to be more gluten-conscious, wondering if maybe not being careful might have had an effect he didn't notice at first.

My daughter and I are more sensitive. No touching of our foods to gluten or it's major unpleasantness. Foods processed in the same room as gluten make us sick. Gluten free foods that are <20ppm make us sick, even! My daughter, we think, can have foods that are <10ppm of gluten, but it's been hard to tell, since she is still sometimes sick when we think she should be okay.

I get vertigo and headaches, nausea - within 15-20 minutes after eating. Aches and pains and other symptoms for the next few days. Rarely do I get diarrhea, although it happens.

My daughter gets horrible stomach pain, now vertigo is starting too, huge emotional problems and anxiety attacks, but she also rarely gets diarrhea, just terrible gas.

Like you said - it's hard, but it is REALLY helpful to know when we're not safe enough for our bodies. Also, have to admit, very motivating to stay on the diet, when the results are so severe!

I had my tell-tale pangs last night in the upper right quadrant where most of my original inflammation was when I was diagnosed. That means I ingested some gluten but not sure where it came from.

my question has to do with foods processed on lines that also process wheat. I tried TJ's frozen French string beans and didnt even think to check the bag. I typically stay away from anything that shares production with wheat products which this product warns of. It was either that or the olives I purchased from a grocery store's olive bar, but I have read that olives are safe in almost all situations as they are never packed in malt vinegars.

I wonder what ppm's those products have that share production lines. if anyone has a link to some research on this that would be great.

Hi Michelle,

I started having issues when I was 11 and I am now forty. That leaves me with 28 years of damage.I felt terrible for a year after I was diagnosed. I was the walking dead. I finally ditched my doctor and went to see a ND. She checked my hormones and vitamins. I've been on supplements for 4 months and I am feeling so much better!

Doctors look for episodic symptoms for one particular appointment while NDs want to know about the whole person and your complete health journey. I would give that a try.

Paula

I was using Gi Revive powder to soothe and heal the gut. It is a bit pricey but you might want to try it for a few months and see if it helps. It contains L-Glutamine as well as N-Acetyl Glucosamine, Chamomile, Slippery Elm bark, Cats Claw etc. Its made by Designs for Health. I use it now only when I get glutened as it helps soothe my gut and relieves alot of the discomfort.

hope that helps!

I've been gluten-free for 2.5 years, at least to the best of my knowledge. Diagnosed via EGD and blood in 2008. I don't get symptoms and wouldn't know if I was glutened. I began using Bob's Red Mill gluten-free Oats several months ago; about a half cup per day, five days per week. I began worrying if I could be getting a "reaction" or damaging myself. I got a Celiac panel along with a tTG-IGA and a complete blood profile. Everything came back normal/negative.

Am I doing a good job or could I be still hurting myself? I have lost some weight; about 7 to 10 lbs recently without trying. I reduced some sugars at nighht, but that can't account for all the weight loss.

Before my dx I was eating regular oats every day thinking it was good for me. After dx I tried to eat BRM gluten-free oats like you but I could still not seem to tolerate them. I guess everyone is different. I seem to remember reading that the Celiac Sprue Assoc does not recommend that anyone w Celiac eat oats in the first year after dx, but Columbia Celiac Disease Center says 3/4 cup of gluten-free oats is ok.... I have not eaten any oats and my healing process continues. I seem to have difficulty digesting oats to begin with. They cause reflux no matter even if gluten-free oats.

Just curious if anyone takes L-Carntine to help with fatigue?

I take it once in awhile, perhaps I should take it regularly. I take coQ10 regularly. The brand I use is from Designs for Health because its supposed to have the best absorption rate at only 8%.

I seem to be sleepy all the time so not sure if it really works

I've been gluten free a little over two weeks, but I keep having strange stress dreams where I am eating loaves of bread, muffins, etc. I've woken up in the middle of the night terrified before realizing I was dreaming. I am experiencing some anxiety over hidden glutens and cross-contamination during waking hours. Just wondering if this has ever happened to anyone else?

this must be common because I have experienced day time anxiety about accidental glutening then having dreams where i ate something like pizza or bread or cake....

I was CC'd on Thanksgiving after allowing a hostess to do her very best to cook gluten-free foods for me. Ever since then, I have had lots of pain in my upper and lower intestines (burning, throbbing & cramping), occasional D and nausea. I spent several days eating all my own, totally gluten-free foods which were easy on the stomach (rice, bananas, applesauce etc) with no real improvement. But I feel okay after I have sufficiently digested the food and if I fast for a while before my next meal. As soon as I eat, it all comes back again.

So I was trying to let my system do its thing on its own, with just some candied ginger, peppermints, and tea to help out. But finally I broke down after reading about the miracles of Pepto (which I used to live on), and started taking it. Immediately, I felt relief from nearly all the symptoms. The problem is, it's been a week since the CC (I wasn't even heavily glutened), and no improvement. The symptoms come back as soon as the pepto wears off.

Sorry for the long description...My question is: Is it possible that Pepto Bismol doesn't allow your body to heal itself on its own? Or should I keep taking it till the symptoms stop coming back? I'd try enzymes or probiotics but don't wanna mess with anything too much (I'm in grad school and need to get through the end of the semester).

Help!

after my diagnosis in april of this year the main things that improved my healing was a good digestive enzyme, probiotics and something called GI Revive. you can order it online. also, stay away from dairy based on your level of intestinal damage. all dairy, including dairy in processed foods will cause you alot of distress. It seems I felt worse for the first month or 2 after the dx, so hang in there.

I'm wondering along the same lines too! I've been on Nexium, Dicetel and Medilac for about 3 weeks now. Today I forgot to take the Dicetel and Medilac after breakfast and by midday I had gas coming out of both ends and it felt like knives were being stabbed into my stomach! I don't want to be on meds but without them I'm not digesting, can't sleep and have pain

I have been gluten free since May 1st 2010. I was taking 20mg of Prilosec up to that point and had to keep taking it for at least several months. However, I went to a doctor who practices Functional Medicine and she put me on a regimen of Digestive enzymes with meals, a fantastic gut healer/soother called GI Revive, and a multi vitamin that contained more than the Daily recommended dose. I was also given a probiotic to overcome the bad bacteria that accumulates from years of imbalance.

My nutritional evaluation blood work showed low b6 and b12 and a deficiency in neurotransmitters as a result of the b6 loss. Also a deficiency in Vit D and iron.

the point of saying all of this is in my opinion if you have been diagnosed with celiac it is imperative that you consult a nutritionist or preferably a doctor who is a functional medicine practitioner so that you can be evaluated on which vitamins/minerals/ essential fatty acids you are lacking in so that you can target correctly.

I cannot say enough about the GI revive. YOu can get it online from amazon though it is a bit expensive. but well worth the cost even if you only need it for a few months. it has a mixture of everything needed to speed healing of your gut. I got it much cheaper from my nutritional doctor. Hope this helps!

is the CF really making an allergen menu?? or at least labelling their items gluten-free or not?? that makes me really happy

& isnt caramel coloring from corn??? that was my understanding from reading on these forums... but i could be wrong... & i also didnt think they added caramel color to balsamic vinegar??? hmmmm

yes, CF has been working on one for quite some time, but apparently they got some things wrong and had to make some corrections but it is on the

way to being released soon. It is a gluten-free as well as soy dairy and egg allergy sensitive as well.

my understanding is that in Europe, caramel coloring can be derived from sources other than corn. most of it in the us is corn-based. someone clarify if

you happen to read this thread.....

can't wait for the CF gluten free menu. I am hoping they will come out w a specific dessert for us like they have at PF Changs.

What about the dressing?

I'm afraid that 'glazed' does shout gluten to me. Recently got glutened by a spice rub. Anything that sticks to food probably has gluten in it. sigh

I use the balsamic and olive oil for dressing. even then, I have to check the balsamic vinegar because the CF uses one that has caramel coloring and the product is from Italy. it never ends it seems. now I have to find out if caramel coloring in vinegar is safe etc.....