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roos

Is It Ok If Ii Have Some Gluten Just For A Week Or On Special Occasions?

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I have recently been diagnosed as having gluten intolerance (2 dq1 genes). I have been following a gluten free diet for the past month and have seen great changes such as being able to consume all of my dinner. In the past my belly would swell from eating a few bites of bread and then I could not finish my dinner. This is all very new to me. I am 30 years of age and am very used to the life I was living before. I figured avoiding gluten would be easy but the more I look into it the harder it is.

My question is I have been planning a vacation since before being diagnosed and now I am not sure I will be able to do it completely gluten free. I also have a soy allergy, but never knew it. Is it ok if I go back on the gluten for just a week and than resume my life gluten free for vacations? I would avoid obvious gluten such as bread but can I eat the hidden stuff for a week? Will my body heal from it or will it only cause more harm?

Most of my assocaited probelms with gluten are neuro related. I get mostly bloating and constipation, which I can control with over the counter meds. and eating less gluten. I think soy just makes my nose run. I think I can deal with these things on a vacation for a week. Yes, I Would definitely want to feel my best, but I jsut don't see how I can. I also want to enjoy my life and do the things I was doing before and share good foods (nasty gluten) with others. I have never been much of an alcohol drinker so I can deal with that but I don't want to feel different than others and I do not want to have to be the one who is a PITA with the order or picky about the restauarant.

I feel really terrible too bc my bf has an allergy to all peanuts and nuts (one of the few things I like and am not allergic too, but also something I have always avoided for our last 5 years of dating bc he is very sensitive to even the smell of it). I don't think I can avoid them anymore and I certainly do not expect him to avoid gluten, but our house has always been peanut and nut free for him. Any advice would be greatly appreciated.

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I would strongly advise you to not eat gluten. Eating "a little" is the same as easting "a lot." A month into healing is great and cheating would set you back, seriously. For your health you need to be on this diet and will be your whole life so why stop for a week? There are easy ways to be gluten-free like sticking to fruits, veggies, and plain meats. Those foods should be soy-free as well. I personally travel a lot and do just fine all over the world on this diet (plus I am a vegan) and I am positive you can have a fabulous and perfect vacation gluten and soy-free! Take this as a learning experience into how you'll be gluten-free and sf for future vacations and you can always pack a few of your own foods. Good luck, enjoy your vacation, and report back to us on how it goes!

Kristina

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Thanks for responding Kristina. It is very frustrating right now. I have always been a very fussy eater and there are a lot of foods I do not eat in addition to gluten and soy. I can't have sugar, certain vegetables that are high on the hypoglycemic diet such as potatoes as well as dairy and fruits. This cuts out a lot of food.

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Roos---NO, you should not eat gluten for a week. You will enjoy this vacation so much more gluten free. ANother thought, sometimes after we are gluten free, our gluten reactions change. What if now you get diarrhea, and can't go out???

Stay gluten free for you health.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Deb has a good point. Reactions to gluten are unpredictable sometimes. You might get a new symptom from eating it now.

I wouldnt do it. Those little bits of gluten would mean a vacation filled with vertigo and migraines.....no thanks!!


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Studies show measurable damage can occur to the intestines with as little as 1/16 of a slice of bread.

And, yes, many here have had dramatically WORSE symptoms from accidental gluten ingestion after having gone gluten-free.

Whatever you are eating now, that is working so well for you, is what you should eat on your vacation. If you have to bring food with you in a suitcase, do so. If you have to schedule extra time to get to a grocery store instead of just heading to the nearest restaurant, then that's what you'll have to do.

It might be time-consuming, but it's a heckuva lot more relaxing than being in the ER on your vacation.

For at least some if not all of celiacs, being gluten-intolerant is simply the first stage of celiac disease.

I think avoiding soy will be more difficult than avoiding gluten! I was just wondering how the soy allergy was diagnosed.

Having a food intolerance does not make you a PITA, and if your friends feel that you are, then you need new friends. If you feel that someone else is a PITA because they are trying to avoid being terribly ill from a known cause, then you need to rethink things.

If you've ever watched someone die from intestinal lymphoma (one of the many risks of eating gluten if you are celiac), you wouldn't worry about the PITA aspect of trying to safely eat.

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I agree with some of the others (well, all of the others, but only some of the reasoning behind their statements).

You don't want to feel like crap on your vacation.

I, personally, would be less concerned with the long term damage from a week of cc, but very unhappy to not remember much of my vacation because of headaches and brain fog.

You are doing yourself a favor to be careful.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I know it's difficult to make such a complete and permanent change in your eating lifestyle, but the worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available.

Cross contamination is also a concern. Utensils, pots and pans, cooking surfaces, etc., may harbor crumbs or other traces of gluten. For example, you need a separate toaster that is dedicated only to gluten-free. If you dip a knife into peanut butter or jelly and spread it on bread, the knife is contaminated and must not be placed back into the jar. A fork used to stir wheat-based spaghetti must not be placed in a pot containing gluten-free spaghetti (by the way, Tinkyada brand rice pastas are the closest in flavor and texture to wheat-based pastas).

One other bit of info for you. You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com.

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

I know it's overwhelming now trying to figure all this out. But believe me, it does get easier once you learn what to look for on product labels and which brands are OK. You will find several gluten-free mixes and frozen foods that are good, usually in natural food or health food stores, but they tend to be expensive. Many conventional foods in coventional grocery stores are gluten-free such as SOME Progresso soups, Oscar Mayer lunch meats, Ball Park hot dogs, and many more. Whole Foods, Wild Oats, and Hy-Vee stores carry a wide selection of gluten-free foods.

As one who is new to the gluten-free diet and lifestyle, you will find the "CSA Gluten-Free Product Listing" one of the most useful references available. It lists gluten-free foods and other products and it has a glossary of terms to watch for on product labels. You can purchase the book at www.csaceliacs.org for $30. It's published by the Celiac Sprue Association which has several support group chapters across the U.S. While this book is one of the best resources available, it is not fool proof. For example, it may list a product as gluten-free, but after publication, the manufacturer may have changed the formulation to one that contains gluten (this does not happen often, but it does happen). The book is updated periodically.

If there is a celiac support group in your area, you will find several knowledgeable, experienced celiacs who will be happy to answer your questions, share recipes, suggest safe restaurants, etc.

Good luck. It will take some time and a learning curve, but you will do fine sooner than you think.

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Thanks. I appreciate everyone's responses. I have another question though. I know it is possible to have the celiac gene and never get celiac. How can we differentiate between those that need to cut out the guten and those that are ok?

I know I have said that I have been feeling better off gluten but these past few days I have been feeling so so ...like before I went gluten free and there is no way I had any gluten bc I have been very careful about avoiding it. I never had a biopsy done but think it would come back negative if I were too. Does this mean that maybe I can eat gluten?

Also, why do the symptoms get worse when reintroducing gluten?

Lastly, is it possible that something else is making intolerant of gluten such as a virus? Perhaps it would mean just treating the virus or whatever it is and than I could eat gluten again?

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Thanks. I appreciate everyone's responses. I have another question though. I know it is possible to have the celiac gene and never get celiac. How can we differentiate between those that need to cut out the guten and those that are ok?

I know I have said that I have been feeling better off gluten but these past few days I have been feeling so so ...like before I went gluten free and there is no way I had any gluten bc I have been very careful about avoiding it. I never had a biopsy done but think it would come back negative if I were too. Does this mean that maybe I can eat gluten?

Also, why do the symptoms get worse when reintroducing gluten?

Lastly, is it possible that something else is making intolerant of gluten such as a virus? Perhaps it would mean just treating the virus or whatever it is and than I could eat gluten again?

The parts that answered your own question I bolded. If your body was not forming antibodies to gluten reintroducing, also called a challenge, gluten would do........nothing. Your own body is telling you that you need to be gluten free, for most that takes a while as it really is so much more than food.

Gene testing is in it's infancy and while not all celiacs with the celiac gene get celiac, or at least the doctor recognized GI symptoms, not all celiacs have those two recognized genes either. Celiac is a whole body syndrome and for some the brain, joint, gallbladder, liver etc. may show the effects long before the gut stuff appears. Gene testing can be useful but it is not the definative diagnosis, your body and it's reaction to gluten is.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Your last post sounds like someone trying to justify something they are going to do anyway. If you have decided that maybe you dont have Celiac and maybe you can eat gluten, and you have DEFINITELY decided to not worry about it on vacation, then I think you should go ahead and eat LOTS of gluten (no matter how bad you feel) for 3 MONTHS and get blood tests and biopsy. It sounds like you are one of the people who would benefit from a GOLD STANDARD dx in order to comply with the diet. For some, results from the diet are just not enough (no matter how good). They always have that little doubt and therefore "cheat" often. Maybe for you it would be better to know for SURE. Your gene tests did not diagnose you as Celiac or Gluten Intolerant. They merely showed a propensity.

You said in your first post you were having GREAT results from the diet. Now it is up to you to decide if you want to stay diligent even on vacation and stop looking for a reason to go off the diet. Or just go off the diet, eat gluten like mad and go through all of the PROPER testing.

With this said, keep in mind that you can still be GLUTEN INTOLERANT even if all of the "proper" tests come back negative. After 3 months of eating tons of gluten and feeling sick and they come back NEGATIVE. Will you keep eating gluten?

If the answer is yes, what can we say.

If the answer is no, then why would you bother poisoning yourself now?

You have to be honest with yourself.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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I don't have obvious reactions to one-time glutenings, but the list of my symptoms that either drastically improved or went away off gluten are:

the rash from hell (DH)

reflux

joint pain

lack of energy

thyroid problems (I was able to reduce meds by 50%!)

hair falling out

bloating

alternating mild diarrhea and constipation (if you had asked me Before Gluten Free if I had tummy problems, I would have said NO. I wasn't aware of them until they went away!)

being overweight

Advanced celiac disease sufferers have a HUGE concurrence with fibromyalgia, MS, lupus, diabetes, gall bladder problems, liver disease, and lymphoma, as well as many neuro problems, including bipolar disease. Not all of celiacs have obvious symptoms.

I have no problem staying off gluten for the rest of my life. I've talked with too many celiacs who suffered the above problems because of continued gluten ingestion (nobody thought to check them for celiac disease). I have too much in my life that is more important than gluten--and the gluteny foods I love are easy to convert to gluten-free and make them myself. Yes, it takes time to make them--and sometimes time is more important than cupcakes. But ALWAYS, my health is more important than any gluteny treat.

I never bothered with the "GOLD STANDARD" of tests, biopsy, because by the time I found out about it, I had already been gluten-free for a month. That supposed gold standard is a crock anyway, because it is NOT as accurate as the bloodwork/dietary response combo. My doctor actually agrees with me, and simply says, "stay off gluten."

So why would I need an invasive, inaccurate procedure done when a positive result would only tell me what I already know, and a negative result wouldn't tell me anything because of the chance of its being inaccurate? Just because "biopsy" and "gold standard" SOUND important?

I didn't bother with the gene test, either, though I would have if the gluten-free diet hadn't worked so well for me. You have to realize that US doctors only recognize 2 genes as being associated (not causing, but being associated) with celiac--but European and Asian doctors recognize 7.

So that puts us back to square one: stay away from gluten.

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I'm not a doctor and every person reacts differently to gluten, but I'll try to answer your questions.

It is possible to have the gene but not the intolerance. No one knows what causes a formerly tolerant person to become intolerant. The change can happen at any age. I belong to a large celiac support group and at our monthly meetings we have newly-diagnosed celiacs ranging from under age 1 to age 80.

How to differentiate who needs to avoid gluten and who doesn't: First, if one reacts to gluten, the person must immediately get on a 100% gluten-free diet and remain on it for the rest of his/her life. You never outgrow it.

If one has no immediate overt reaction (gas, diarrhea, pain, etc.), one can have less obvious reactions such as anemia. The only way to be sure you do or do not have celiac disease is to have the biopsy. However, if you clearly feel bad when you consume gluten and clearly feel good when you don't, it's a pretty good indication that you have the disease.

You say the last few days you have felt so-so even though you have been careful to avoid gluten. I'm not challenging your statement that you have been careful to avoid gluten, but there is a possibility that you are so new to this situation that you don't realize all the sources of hidden gluten or the opportunities for cross contamination. I know from my personal experience that for the first few weeks after being diagnosed, I made several mistakes and accidentally consumed gluten. For example, some headache medications are gluten-free and some are not. If you use a toaster that also toasts wheat bread, you may have cross contamination from crumbs. Most celiac families have two toasters, one for gluten-free and one for wheat breads.

While federal law requires listing wheat on product labels as one of the 8 major allergens, it does not require listing barley which is just a bad as wheat. Barley derivatives, such as malt and malt flavoring, appear in many foods. Flavoring from barley can occur, especially in meats, and it doesn't have to appear on product labels.

My point is (1) that you have to check the ingredient list of everything that goes into your mouth, so if you can't tell from reading a product label, you need to call the manufaturer and (2) you must take very careful measures to avoid cross contamination (clean utensils, cooking surfaces, etc.).

Another matter is the risk of eating out, whether at a restaurant, someone's home, a school, an office snack day, etc. If you can't be absolutely sure the food you put in your mouth is gluten-free, don't put it in your mouth. Many celiacs, including me, carry our own food with us to other homes, office snack days, etc. I've even carried cheese and hard boiled eggs to restaurants while the rest of my family enjoys the dining out. Fortunately, we have discovered five or six local restaurants that can serve gluten-free food. For example, Outback has a gluten-free menu (you can find it at their website). Even so, there can still be a risk of cross contamination in the kitchen, but so far, I've never had a problem at Outback.

Viruses do not cause gluten intolerance. There is no treatment or pill for gluten-intolerance. The only option is never to consume even a trace of gluten for the rest of your life. I know that sounds tough, but I also know that, as you study and learn more about the disease, you will find adjustment much easier. In fact, I tell people that, if you're going to have something go wrong with your body, choose celiac disease. It's much better than cancer, diabetes, heart disease, arthritis, etc., because it's so easy to control: just don't eat gluten.

There are many good gluten-free recipes and gluten-free products on the market. Availability gets better every day, because food manufacturers' are learning that this is a profitable new market that won't go away like the fad diets, such as the Adkins Diet.

I guarantee that your life will get better. It's just a matter of doing your research. I admit that it's inconvenient and frustrating, but as you learn which products are safe, it will be a lot easier. Many name brands have gluten-free items, so you don't have to buy all specialty foods. I really recommend the CSA Gluten-Free Product Listing that I mentioned in my earlier posting.

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roos,

I have been strictly gluten-free for 2 months. About a year previously once my skin started causing problems, and I lost weight/digestive problems, I started an exclusion diet. This meant I was mostly free of gluten, yeast, lactose, soya etc. As a diet challenge to eliminiate I began with yeast as it appeared the easiest and there was no doubt I did have a yeast problem with candida. I had returned to gluten as part of this challeneg. My good results were shortlived, and after a few months my health went back down, skin started erupting, digestion etc all started to deteriorate. I then removed gluten for about 3 weeks with no obvious improvement, so I began to eat gluten produsts again (asuming 3 weeks was sufficient test time). My skin went crazy, the itching drove me near to distraction (this is dermatitis herpetiformis), digestion etc. This was enough evidence for me. I began a far stricter gluten free diet, however the point of my tale of woe, is that my skin eruptions had become worse with all the on/off diets. My skin has improved as has my digestion, however my first removal of gluten one year ago produced quicker, better results.

If I travel, I carry basic foods - gluten-free pasta, rice, cans of tuna etc - its not hard to stock yourself up with enough to stay nourished if you are forced to avoid contaminated meals. I also discovered that many restaurants cater for gluten-free and do so with a minimum of fuss. I would prefer to have the social disease being different to that of gluten damage. Note that alcohol multiplies tha inflammatory effect of gluten on the intestine by 100 (ie. beers etc), so you will pay a high price if you drink.

Tough as it is to adjust, it cannot be worse than the symptoms of celiac disease, especially the long term ones. You are likley to have occasional accidents even if you are careful, deliberately defying your diet could have a major effect. The only benefit of doing what you are talking about, is it will probably cure you of ever doing it again.


Gluten free June 2008, candida/yeast free Nov 2007, dairy free 2001, dust mite avoiding 1997.

Cold water urticaria, DH.

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