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      Frequently Asked Questions About Celiac Disease   09/30/2015

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

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23 posts in this topic

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chrissy    2

i really would like to be able to use oats---if i can get them pure. our ped gi said oats are ok, if pure. i know alot of people are worried about reacting to them anyway. is there anyone out there that has been able to eat them occasionally without problems? i found some that are grown especially for celiacs, but i am still afraid to use them, at least not until i hear it one more time from our ped gi that they are safe.

christine

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jenvan    7

Christine--It is wise to be cautious about oats. 2 reasons why I don't: 1) the only way IMO to know if you are truly reacting to oats would be follow up testing, endoscopy, blood work etc. somtimes internal damage can be occurring without an exterior manifestations or symptoms. 2) i have not as of yet seen or been convinced of a completely gluten-free, non-contaminated brand of oats. and if i did, i would still refer back to number 1. just my thoughts until more research etc really comes out on this :)

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hez    2

I have not tried oats yet. I am waiting until I have been gluten-free for at least a year. Plus I would like to talk to my gi doc some more about it. I did find this website which I think is interesting. I do not know anyone or have a interest in this company http://glutenfreeoats.com/. When and if I do eat oats I will be getting it from this source. That way if I was to have a reaction I will know for sure it was the oats and not cc.

Hez

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happygirl    6

I believe it was one of the Celiac "experts" at Columbia (Dr. Green, maybe?) who said recently that pure, uncontaminated oats are safe. I think there are two brands---McCann's is one, and I can't think of the other one. I just made a dessert with it last weekend and it was great! If you do a search on this board, you should be able to find the thread about it.

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mamaw    133

We posted about this before but Cream hill in Canada and the previous post that mentioned the oats from Wyoming are both the purest of pure and they have been tested. I don't think either one is quite available yet . I know the one in Wyoming is trying to get them into stores and they said they would send me an e-mail when I could order directly but I haven't received it yet. I did sample the oats from Cream Hill and I loved them and I didn't have any problems with them.You can go to each website and make your own choice as to eat or not eat ......I believe they both say start out very, very slow when adding oats back into your diet.I got my sample pkg from a celiac conference.....I never thought I would miss oats....

good luck

mamaw

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jenvan    7

My problem with brands like McCann's--a study was done on them where they were over codex standards for gluten in the batches tested--contaminated. From McCann's website below... If someone wants me to find the study, I can do that. 3 brands were tested, all had gluten contamination.

"All McCann’s oat products are processed in a dedicated oatmeal mill that handles only oatmeal. In the supply chain between farm and mill, there is a possible cross contamination with other grains, such as wheat and barley but we reckon that the level of non-oat grains to be less than 0.05%. Cleaning equipment within the milling process would remove the vast majority of these grains along with other elements such as stones, straw etc.

But we cannot guarantee that McCann’s oats are totally gluten free and we recommend that consumers use their own judgement as to whether they wish to use our oatmeal or not. Many celiacs can tolerate our oatmeal products without any adverse effect but they may not suit those who are particularly sensitive."

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Rachel--24    4

I got brave and started eating McCanns oatmeal and the first 2 times I got alot of rumbling in my stomach and some abdominal pain. I wasnt too worried cuz I'm never quite right anyway. The third time I ate the oats I had immediate "D"....this kind of alarmed me since I never get diarreah. I'm not someone who had alot of GI symptoms and the "D" is rare. I also got 2 sores on my face (I still have them :( ).

Anyways that pretty much scared me into not eating them again. One thing to mention is that the first 2 times I had the ones that are in the can. They look like little pellets. The third time was the kind in the box...just your regular looking instant oatmeal. They were both McCanns. Is there a possibility of one having a higher contamination than the other.

I was really dissapointed because the oatmeal was soooo good. The one in the box tasted much better to me for some reason. I was truelly in heaven until I ended up in the bathroom 3 minutes later. :angry:

Jen, I would like to see the study if you can find it. Were the results different from what McCanns claims on their website?

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Guest Viola   
Guest Viola

I also tried oats and although I didn't get classic Celiac symptoms, I was queezy and uncomfortable, so have decided not to try them again. Perhaps I have become intollerant to them after so many years without them.

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nettiebeads    1

Even the experts are in disagreement on oats. Some say that the pure, uncross-contaminated ones would be okay. Others say that the protein in the oats is so close in stucture to the gluten protein in wheat that it triggers a response in some of those with celiac. Not enough testing, blind testing, and double blind testing has been done yet to rule one way or another. Me, I stay away. I've found that even if you don't have a classic celiac disease response to something, you can still be making yourself sick. I miss oats, but I enjoy being healthy a whole lot more!

Annette

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tarnalberry    314

studies done on this subject show that *pure, uncontaminated oats* are tolerated by most - but NOT ALL celiacs. a small percentage (~10%? I don't quite remember), DO get intestinal damage from the oat protein avenin. there is not currently a test to determine if you are one of the ones who will react to avenin. and then there's the issue of finding pure oats... ;-)

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Guest nini   
Guest nini

I would love to be able to eat oatmeal, but since the experts can't seem to agree, and even supposed pure uncontaminated oats pose a small risk, I will continue to avoid them.

I did find a porridge by Barkat on the Gluten Free Mall site that is delish... love it.

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chrissy    2

i would like to order some of the oats from the place in wyoming, but they are really pricey. i used to make a really simple homemade granola that my family loved. my daughter that needs to gain weight liked my granola. it is easy to make granola full of calories, i'm sure you can see where i'm going with this......anyway, wouldn't we be able to tell when they have blood tests again if oats were a problem? if they were reacting shouldn't their tTg levels stay high?

christine

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jenvan    7

christine--i got a pdf of the test i mentioned. if anyone wants a copy, send me your e-mail address and i'll send it to you...

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chrissy    2

jen, my e-mil is kevheiner@msn.com

do you know anything about the oats from wyoming. i was thinking about sending the link for them to our ped gi and having him look it over and tell me what he thinks. he seems to be really informed and up to date on his info. i never would have thought that i would desperately want to be able to feed my children oats! LOL!! i am interested to see the report you are talking about. the people from wyoming say their oats have been tested and are safe---i wonder if we could get a copy of THEIR tests??

christine

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jenvan    7

Am sending to you Christine. And yes, why not ask the Wyoming company to verify the safety via tests, and how and how often do they test etc...

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i really would like to be able to use oats---if i can get them pure. our ped gi said oats are ok, if pure. i know alot of people are worried about reacting to them anyway. is there anyone out there that has been able to eat them occasionally without problems? i found some that are grown especially for celiacs, but i am still afraid to use them, at least not until i hear it one more time from our ped gi that they are safe.

christine

Christine,

Watch out for oats. While the manufacturers may claim they're safe, the USDA allows as much as twenty percent! wheat in oats. I've tride them all and most of them have given me at least D and pains. Just a tip.

jeri

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hez    2

The Wyoming oats are almost ready. I have put in to purchase a bag. Compared to the other companies I actually trust them. The reason they started this was because they have celiac in their family! I am not saying you should eat oats! I think eating oats is still risky because no one knows if they are in that group that will react. If I try them I will give a full report.

Hez

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darlindeb25    5

I attended a Suffolk County Celiac Support Group meeting where Dr. Peter Green was the guest speaker--he did mention that oats are safe, but when he asked how many in the room actually would eat oats--out of a group of 200, 1 person raised his hand----so, I say no, they made me sick before going gluten-free anyways. Deb

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key    1

I too reacted to oats. THe reaction wasn't the same as gluten, but I can definitely NOT eat them. THey also didn't agree with my celiac son. I don't know if I believe what they are saying about oats being safe. I would LOVE to be able to eat oats. THe next day after eating them I have major exhaustion. Also they were making me nauseated and depressed. I wish I could eat them, but I am sure my body is reacting to them. Oh, I used McCann's.

Monica

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scorpio9    0

:(

I too reacted to oats. THe reaction wasn't the same as gluten, but I can definitely NOT eat them. THey also didn't agree with my celiac son. I don't know if I believe what they are saying about oats being safe. I would LOVE to be able to eat oats. THe next day after eating them I have major exhaustion. Also they were making me nauseated and depressed. I wish I could eat them, but I am sure my body is reacting to them. Oh, I used McCann's.

Monica

I'm a bit late to enter this discussion- but I've been diagnosed for about a year & am still having lots of probs. Was diagnosed after 10 years of too many episodes of illness- had gall bladder removed, numerous endoscopies, colonscopies, with no relief. Am 74 & now just experiencing more arthritis pain and recurring spinal stenosos,(had surgery 5 Yrs ago).Well about the oats- I use McCann'sand until recently really was pleased but now it seems almost anything sets me off & have D in about 20 minutes from digesting meals.I am very careful but do crave lots of chocolate with nuts.I am compensating I think for some lack of nutrition in my diet. Margaret

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chrissy    2

i am going to get some of the wyoming oats---they are supposed to be ready april 10. my girls will be having blood work done in about 2 months, so i figure we will be able to tell if they are a problem for them.

christine

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KaitiUSA    7

No oats for me...some people react to the protein, avenin in the oats even if they are uncontaminated. The U.S oats are almost always contaminated with wheat though.

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