First, a quick Dude health update: I went to see my GI yesterday. He says something is definitely going on, but it is not necessarily the celiac. My blood work from a few months back showed no gluten antibodies, so it’s not hidden gluten that is causing me to feel like crap.
So here is the current plan of attack: More blood work yesterday. Today, I am heading in for an endoscopy, and next week I’m scheduled for a CAT scan. I’m convinced he’s not gonna find a dang thing. At this point, I just want to KNOW, no matter what it is. Will keep you posted.
Your comments and your emails have warmed my heart…I can’t thank you enough.
Yeah, I know, blah, blah, blah.
Ok, onto today’s post….
———————————————————
I received the following email last week and I was a bit stumped on how to respond. So whenever that happens, I find it best to open it up to the forum and get your feedback.
Hi Gluten Dude,
I have a dilemma of sorts for you. I tested negative for celiac but have been determined gluten intolerant by my doctors. We’ve also found that I have a weird case of having-but-not-having ulcerative colitis, but I digress. My point is, I can’t eat the gluteny foods without getting sick, and I’ve been happy to find a diverse, encouraging community on your blog. Because I don’t have celiac and have found my tolerance level to be somewhere between that tiny piece of communion bread and a tablespoon of orzo, I don’t concern myself too much with cross-contamination when I eat out. For example, I’ll pick off the crutons when they forget to leave them off.
So I agreed to go to a local sandwich chain with some friends yesterday, because most sandwich shops have salad. This place amazingly offered gluten-free flatbread and had a list of gluten-free items. The server clearly knew her stuff and questioned me on how my sandwich should be prepared, if it could share the grill with other sandwiches. Never wanting to overexaggerate my dietary restrictions and a lifelong fear of being a nuisance (I am a little sister!), I ensured her that my sensitivity allowed me to withstand a bit of cross-contamination, and I emphasised that I didn’t have celiac.
I sense a RED ALERT coming on, so please be gentle with your response! When I come across these instances, I want to be a helper, not a hurter, of the celiac community. Should I just fake having celiac and insist on the same preparation methods you would?
Thanks so much!
Mary
I love the fact that she is concerned about those with celiac disease, even though she is not inflicted herself. It says a lot about her character.
And I would tell her “Yes…you should insist on the same methods. Even though you don’t have celiac, it is still a health issue for you. Don’t do it for us…do it for yourself.”
But I also understand there is a gray-area here and some people might not agree with me.
What are your thoughts?
I always feel it’s important for those with gluten sensitivity to treat it as seriously as celiac disease because in the end nobody should eat gluten. If you body is allergic to gluten it should never be ingested therefore you should always be on guard and take all precautions necessary.
TOUCHE!
The only things I would say to this is – first off, THANK YOU for understanding Celiac Disease. Most intolerant people do not get the extent of our disease and push off cross contamination like it is nothing, which in turn causes a flood of misinformation in the mainstream medical /manufacturer/restaurant world, which in turn causes more uphill battles for us. So thank you.
On that note, if I were you and had an “intolerance”, I would avoid all contact with gluten so you avoid making yourself sick. Self inflicted illness is never fun, even if you don’t end up will long term damage like we do.
I struggle with this same issue. I do not have celiac, but after months of detoxing and adding foods back into my diet, though the help of a nutritionist, I have be labeled “Non-Celiac Gluten Intolerant” and Lactose intolerant (which I already kind of knew, but didn’t want to accept—I love icecream!) PS- Breyers lactose free taste exactly the same!
At this point, it has been 8 months of gluten free life for this girl, and I struggle with trying to figure out my sensitivity level. Don’t get me wrong, I do not eat gluten on purpose, but try to track when I feel sick a day to figure out what I ate wrong. I find that I am actually more sensitive than I thought, and probably 20% of the time I feel sick after eating out even when strictly ordering gluten free. I have a younger cousin that was diagnosed with celiac at age 1, so I have known about celiac and gluten free eating for about 17 years now. When you have a cousin, and VERY protective aunt, concerning cross contamination to the point of NEVER eating out, I do not want my “laissez faire” attitude at the restaurant dining table to mask the seriousness of cross contamination for celiacs that dine after me. I struggle with this moral dilemma every time I eat out, especially in front of friends that saw me eat fried Buffalo Wild Wings and beer months before, and now I am asking them to boil my gluten free noodles in clean water. I am sure the following questions go through their mind, “Is this serious?? What’s really going to happen to her? She was fine 4 months ago!”. While this “special ordering procedure” seems both embarrassing and annoying, it does not compare to the struggles a celiac goes through daily; therefore, for us “non-celiac gluten intolerant” we need to continue to demand strict adherence to cross contamination policies. You are not faking celiac, you truly have an intolerance to gluten; protect yourself and continue to demand proper food preparation for your needs.
Mary,
Thanks for your honesty! I’m gluten intolerant and there is no doubt about it. I have symptoms that are of Celiac Disease but since I do not have health insurance nor can afford to pay for all the tests that I need I don’t know if it’s very high gluten intolerance/sensitivity or Celiac Disease. I’ve paid out of pocket to see two doctors both saying I need to be tested. Anyway, all I know is that I don’t live on or around the toilet anymore and I’m not constantly itching everywhere, etc.
When I first went gluten free I didn’t think that the cross contamination was going to hurt me but boy was I wrong. I still felt horrible and the itchies were unbearable. So since then I live my life as a person with Celiac Disease would.
I am glad that you care about the cause (Celiac Disease). After all, whether or not a person has Celiac Disease we are all in the same gluten free boat. We wouldn’t have gluten free choices if persons with Celiac didn’t advocate for them all these years.
Anyway, to answer your question, you don’t have to fake celiac. I always say I have a very severe gluten intolerance and then ask them to protect me from evil gluten. Lol for me, if the person I’m saying this to is kind we’ll have a great laugh and they’ll take care of me for sure. I haven’t met a waiter or food preparer to not care…..yet.
Sorry for the long winded answer but yes, I think you should be aware and ask about cross contamination and should practice it yourself. Just because you don’t see a reaction it doesn’t mean the cross contamination gluten isn’t damaging your body. We want you around for a very long time girl! Plus I really think you’d be helping those with Celiac by making food places aware of the cross contamination issue so that there future experiences will be genuinely gluten free.
Thanks again for your honesty! Great question. I love that you care about others!
Gluten Dude hope you find answers and feel better soon!
I’d stick with a celiac // true gluten free diet. Even for people who are not “celiac” but are “gluten intolerant” the best thing to do is to avoid gluten all together, which means, eating a GF diet.
However, in the scenario in question I think you did just fine. The person was asking questions for you and your saying, “I know celiacs who can’t have any bit of contamination or they have issues asap, I’m not that severe, but I still can’t have gluten. Please prepare as safely as you are able.”
There is still much to learn about those with non-celiac gluten sensitivity so I don’t think it’s safe to say any amount is okay. The one thing I can say is that it has now been proven to be an immune response separate from wheat allergy and Celiac. I’ve also heard some say that after being totally gluten-free for a long period of time, the reactions become more intense including with only cross-contamination.
To answer your question, I think you should insist on no gluten as if you have been diagnosed Celiac. Period. Who knows, it may be Celiac that is just too early for them catch. You know you react negatively to it and miniscule amounts may be doing harm you can’t gauge. Do it for yourself. There is no reason for anyone to risk their health with something that clearly the body is trying to reject.
I can provide a lnk to the latest research on it if you like. The results have been verified in double-blind studies and the information has been peer-reviewed for publication. Dr. Alessio Fasano is one who has spearheaded a challenge to educate our medical community that there is in fact an immune response to gluten in non-celiacs. I think the majority still believe it’s all in the head.
And thanks for your question!:)
Hi Miss Dee Meanor- If you could please post a link to this article I would be very interested in reading this research.
Thank you!
I heard Dr. Allesio Fasano speak last weekend at the Gluten/Allergen Free Expo in Charlotte, NC. Fabulous! This is the URL that he had used in his powerpoint presentation to illustrate that doctors are taking notice now. (I copied the URL down while he was speaking and found it myself.) This was just published this past February. He said it has been downloaded over 60 million times….30,000 times last week alone. It is a guide for physicians to determine whether to recommend their patients go gluten free.
http://www.biomedcentral.com/1741-7015/10/13
This article is also referenced in the Wall Street Journal here:
http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html
Sorry it took me so long to respond. I just got off work.:)
Thank you Miss Dee! I am a 25 year old who has been gluten free for 8 months after finding out that I have Barrett’s Esophagus. Very few people my age are diagnosed with Barrett’s, and I am convinced that gluten has something to do with it. After my Dr. just wanted me on anti-acids for the rest of my life, I enlisted the help of a nutritionist who then helped me to discover that I am gluten sensitive and lactose intolerant. 8 months and 25 lbs later (I was athletic and eat healthy before being diagnosed, I feel like a different person. Now I just need to stop the eroding of my esophagus…
My son was diagnosed with Celiac disease when he was 14. He just had an endoscopy today and the GI specialist believes there is a high likelihood of Barrettts esophagus. He has been comepley gluten free for 2 1/2 years. He doesn’t complain of reflux symptoms, but we all have it. Does anyone believe ppi’s have really helped them?
If you have a gluten intolerance you are just one part of the spectrum.
(and who says you may not develop CD later in life should you continue to ingest it in small amounts? Latent celiac works this way)
I’d say go with being as strict as possible. You’re very sweet to be concerned about us celiacs, but we’re very concerned about you too!!
I echo Miss DEE’s mention of Dr. Fasano’s research. NCGI causes more problems than the medical profession admits.
We could argue the “no gluten means no gluten” thing all over again, but we beat it to a pulp last week. 🙂
and
G-Dude, I hope the GI gets to the route of your problem, one way or another. I feel bad that you feel so crappy. 🙁
Did you mention to him that your Mom has Addison’s? Just thinking about that fatigue aspect…..
Thank you for saying we are just as important to you as you are to us. It can be really difficult sometimes not having an actual diagnosis. Some people think if you don’t have celiac that it isn’t really a big deal if they accidentally slip something in. I was really careful at first and then backslid for a while. I wasn’t actually eating gluten but I wasn’t as careful with contamination and checking ingredients and I learned my lesson the hard way. It really is better for everyone if we are all vigilant about gluten.
I’d love to be gluten intolerant and not have celiac. I’d behave just like a celiac in restaurants but not suffer the anxiety and after effects of gluten like a celiac. It would be wonderful to enjoy a restaurant experience so do so. Eat like a celiac for your own well-being and make a good impression for my well-being. None of this – do the best you can stuff to staff – be consistant.
In short, yes, you should eat as though you were a celiac.
In long, allergies and intolerances, especially to gluten, usually cause damage to the lining of the small intestine. This damage leads to holes in the lining of the intestine, so the protein molecules “leak” into the bloodstream and other portions of the body. That in and of itself creates problems in other organs, but also can create a histamine response to these molecules, creating allergies to other foods that worsen over time. Continuing to cross-contaminate yourself will likely make your gluten-intolerance worse, and possibly create allergies to other foods you know and currently love. Why do that to yourself? There is medical research to back this up: they have found gluten/gliadin in hearts of those who have died from heart failure, gluten proteins in pancreatic tissue of those who have died from diabetes or pancreatic cancer…gluten had no business being there, but it was, how much it contributed to their deaths is inconclusive, but I don’t want to take that chance…do you? I looked it up a couple of years ago, so please forgive me for not posting links to the studies, but I believe it was in the JAMA.
Too, false-negatives are all too common in the celiac blood tests, and even in the small-intestine biopsy tests to determine celiac.
And, thank you very much for being concerned about the image you project for those that cannot eat ANY form of gluten. It is much appreciated!
I SO appreciate ALL these comments! I am intolerant and able to handle some gluten without “symptoms”. I keep a little gluten in my diet so I won’t have a “severe” reaction that would happen if I were off it completely. I am second guessing that now having read these comments. I do not want to further damage my colon or any other organs for that matter. I just hate the “reaction” and trying to prevent it by keeping a little going not really knowing the effects that I could be causing for the future?
For Gluten Dude, have you had an Alcat test? It is a blood test that test for 400 different things for intolerances. In addition to Gluten, I was eating things everyday that I shouldn’t have. You may have other intolerances that are making you feel sick.
http://www.alcat.com
Doctor’s will not offer this tests, but Chiropractors and alternative doctors will. If you cannot find a doctor Alcat will send someone to your house to draw blood. I think we are all in agreement that “food” can wreak havoc on our system, you feeling sick might be as simple as avoiding yet another ingredient. It’s just an easy place to start. I hope you get to the bottom of it and feel better soon. 😉
My wife has celiac and she is very sick right now, but we cannot figure out why…CT scan normal, no fever, labs and ua normal, but she cannot quit vomiting… Celiac is so tough and most people don’t understand or think that it is not a “real” condition. Even some doctors seem like they have never heard of it. I just want my wife to be healthy….Is that unrealistic? Anyone who has been diagnosed for awhile, can you share? Does it get better or can you only hope for some good days?
It’s not an unrealistic request…so sorry she is struggling so badly. Took me years to feel better and I still suffer (though I’m in the process of seeing it is something else in addition to celiac.)
You may want to check out the comments on this page:
http://glutendude.com/celiac/celiac-disease-not-healing/
Some amazing advice for our rockin’ community.
I’m with all of the above. I, too, tested negative for Celiac’s, however, I have all the signs of it and cannot eat any gluten. And I’ve become even more sensitive to it the longer I’ve been gluten free – just over a year. Now I’m contemplating the scope deal, and worry about cross contamination. I say treat it like celiacs — because the side effects/sick from eating gluten just isn’t worth being worried about being a hassle. 🙂 Did that even make sense?
Thank you all so much for your feedback and kind words! I love the community here, and I learn so much from Gluten Dude and all ya’ll. I will take everyone’s advice to heart and put it into practice.
Miss D., thank you so much for the article! Although I learn so much about CD and other gluten problems from personal stories, I’m always anxious for the academic research side, too.
I am only just figuring out what is “wrong” with me. I am self-diagnosed as gluten-intolerant, although my doctor is supportive. However, he is not supportive of any celiac “discussion” as I am not a “classic” case. I know that’s a lot of quotations there, but I feel like I get the runaround a lot. For me, I have to follow a strict gluten-free diet, including worrying about cross-contamination etc, but came to the diagnosis through an elimination diet and am not really willing to go through a gluten challenge in any case. I worry most for a celiac diagnosis because I want to know if I should worry about my children.
But regardless – I really liked your question, Mary. I sometimes feel that because I’m not “official”, I don’t have a voice in the celiac community, and don’t want to feel fake for acting like a celiac.
Hi there
just wanted a little advice. Do you know if prior to testing for celiac, I should be eating gluten containing foods. I stoppped eating gluten about 8 weeks ago as I constantly had tummy troubles, mouth ulcers, headached, fatigue, brain fog etc. I now feel so much better and have visited my doctor who has booked me for a test at the hospital. However, he wasn’t sure if i needed to be on a gluten diet to be tested? I know I probably should have asked to be tested first but it isn’t for 8 weeks so I could go back on the dreaded stuff and see!
I was told that one must be consuming gluten for the tests for Celiac to be accurate. To my knowledge that hasn’t changed. The amount of gluten one must consume as well as the amount of time prior to testing has been debated. Here are three links for you to consider:
http://thesavvyceliac.com/2011/11/29/before-you-do-a-gluten-challenge-consider-this/
http://www.medwire-news.md/41/99641/Gastroenterology/Low-level_gluten_challenge_provokes_celiac_response.html
http://celiacdisease.about.com/b/2011/07/14/gluten-challenge-getting-tested-if-youve-already-gone-gluten-free.htm
Good luck!
Hi Groover. Miss Dee is correct. You need to be on gluten for the test to be accurate. Pathetic your doctor did not know that.
Cancel your test because it simply will not be accurate.
It’s up to you whether you want to go back on gluten or not to confirm the test. This is a dilemma a lot of people face in your situation and its a very personal choice.
Good luck to you…
My Doctor says you just need to consume gluten three days before the test for the antibodies and I can’t because gives me dermatitises that have been became worsen with the exposition. So a dermatologist already have been told me that I have atopic dermatitis, but this Dr. haven’t told me why and what trigger the reactions. But I feel in the skin that is the wheat, gluten. Now, this other Dr. have passed the exams and I did the rasts Ige and gliadina that doesn’t accuse nothing and that’s because I can’t provoke. So maybe I do the genetic test and get over with it.
I don’t know if I am Celiac or not. I think I am, every time I read up on it , It makes so much sense! I am going to talk to my Dr. And get checked. Since I have been reading and learning , I look around at everything people use to cook with and what they cook, seems everything has Glucose in it. I even looked on a can of beef broth and sure enuf .. I know 2 people with it and never truly knew what they are going thru. Now I do!! Just reading I know. Your blog will be one of my favs!! Thank you for all the info!!
More than a year ago, I was being treated for ADD and put on medication. Suddenly, I found I felt full after only eating a sandwich and started waking up in the middle of the night with an uncomfortable feeling in my upper left abdomen as though I couldn’t digest my food. I spent many nights in the washroom, sweating, in pain and worried that I would pass out. My doctor tested me for gluten intolerance and, to my surprise, it came back positive. I then went for a biopsy, but that came back negative. I followed a strict gluten free diet, but was still feeling pain in my abdomen. I then decided to stop my medication and the pain went away. Still, I stayed mostly on the gluten free diet because my gums stopped bleeding and an annoying rash (that only appeared on my feet) disappeared after having bothered me for a good ten years (my doctor thought it was athletes foot, but I think it was something else because it’s gone now).
Anyway, my GI specialist thinks that I’m Latent Celiac, but didn’t give me a clear reason to avoid gluten. Still, having a background in nutrition, I have always taken health seriously. After a while, I got curious to know what would happen if I accidentally ate gluten. I started toasting my bread in the toaster with everyone else’s bread, I stopped washing my hands every time I handled regular bread (for my kids). I occasionally tasted a bite of muffin to understand why my kids didn’t like a recipe I made. So far, my gums haven’t started bleeding again and my rash is still gone. I sometimes feel tired, but I don’t keep a regular food journal so I’m never 100% sure it’s the tiny amounts of gluten that are bothering me.
Still, my doctor ran another test for gluten antibodies and it came back negative. She said to continue the way I have, but not to take that as reason to sneak a regular cookie once in a while. Still, I get frustrated when I purchase a small 20$ bag of gluten free flour only to realize later that it contains 0 fiber and the first ingredient is corn starch. Twenty dollars for a bag of mostly starch! One thing that I am grateful for is discovering new flours like Teff which has more nutritional value than wheat. Being the girl who used to add wheat germ to most of her baked goods, I was happy to find other foods like chia seeds, flax flour and teff. I love the dense texture of some GF breads and love that it’s not as hard to bite into. But it angers me that I have to pay 2-3 times more for baked goods with sugar as the first ingredient, so I don’t buy it and make my own.
When I was first diagnosed, my doctor believed that gluten might be the reason for my depression and anxiety. But since my antibody reading came back negative and I am now being treated for severe panic attacks, I don’t know what to think anymore. I also had a piece of DQ cake for my Bday as a test and I didn’t notice anything afterwards.
When I go out, I either try to find something on the menu that would likely contain no more than traces of gluten without mentioning anything to the waiter or waitress. I don’t want to be more strict in public than I am at home, but if I have trouble finding a meal that is mostly gluten free I make sure to tell the waiter/waitress that my gluten intolerance is not as severe as someone with Celiac Disease but that I do avoid it as much as I can.
It’s getting easier as time goes by though. And I love when people offer me desert and I tell them I can have gluten and they understand. If I were to tell them that I didn’t want it because i was watching my weight, they would probably push me to cheat. Since refusing food because of my gluten intolerance I’ve been lucky to not have a single person say “just this one time!”.
When I went gluten free after celiac diagnosis, the first 2 months cross contamination wasn’t an issue to me neither. The first month I could even cheat a little without feeling too bad. In that period, I thought people overreacting were making it up, I didn’t get it even if I realized that the sensibility was slowly increasing. Now, 6 months later, I am like those “hypersensitive” celiacs : huge reaction to very very very small amounts of gluten. I can’t even cook anymore in a glutened kitchen even if I try my best to avoid cross contamination. I would not say that I get sick just by going to a glutened place (I dont). But cooking and eating there might make me sick – or not if it is my lucky day. I didn’t imagine it would go to that point, where tiny amount of gluten makes me so sick that ALL of my previous symptoms come back – my whole face changes in few minutes and I look like the Walking Dead zombies, I get diarrhea or constipation, mouth sores, bruises on my legs, tiny crusts on my hands, brain fog, memory and hair loss, depression, angryness, awful insomnias, a six months pregnant belly, heart racing, migraines, swelling, EXTREME fatigue, obsessions and anxiety, etc. My whole self breaks down because of cross contamination.
And it wasn’t the case at the very beginning of the gluten free diet : during 1-2 months I could cheat and still avoid the full panel of symptoms. So easy compared to now!
So, yes, ask for the same preparations than celiacs, FOR YOUR HEALTH.
Even if your tests were negative, tests to detect the disease aren’t that accurate and they may miss some people to whom the disease is at an early stage or made less dramatic damages, but is still there though (how many people?). The blood tests are testing non-specific antibodies, the intestines are VERY long and they only look at tiny pieces compared to the intestines’ size, and the biopsy results are depending on someone’s subjective appreciation. The huge damages they are looking for may develop later…
Your sensibility may increase though months, and even if you dont feel it, I can – we can – assure you that your body knows when you ate gluten. So just ask a real gluten free meal. You may not be celiac but gluten makes you sick : you deserve it. Dont be afraid to ask, especially when they’re ready to do it for you!
Well, I have celiac. So I started cooking GF for my family 15 years ago because I just didn’t want to handle the stuff in MY kitchen. I told the family they could eat it if they wanted outside the house, but not in it.
An odd thing happened. They decided they didn’t feel well when they had “gluten food”. They went gluten-free. I doubt they are celiac and they don’t get REALLY sick when there is gluten around. They won’t get tested because “Why eat something that makes you sick?”.
When we go out though, everyone uses about the same strategy. They are less picky than I am and don’t worry about cross-contamination, but mostly we eat at places that have a GF menu and are pretty good about it. We all take bentonite when we eat out, which is something of a get-out-of-jail-free card for us.
We also don’t eat out nearly as much as we used to. Partly I just hate the current “oh, those picky gluten people!” meme at the moment. Partly it’s just that my cooking has totally improved, to the point that most restaurant food seems slapdash and tasteless compared to what we have at home. And when I get a $30 tab I think “wow, I coulda bought a whole lobster for that … “.
So yeah, your strategy will probably end up being a lot like a “real diagnosed celiac” one way or the other. I see it’s been a few years, I wonder how you are doing now?
even if your not feeling ill, doesn’t mean your not getting hurt