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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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bessiejay

Is The Gf Diet Not Working?

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Hi. Im new and so happy to have found this board. I feel like the gluten-free diet isnt working for me. Ok a little background, I am 22 and just graduated college. Ive always had stomach aches, gas, and heartburn, but, about a year ago I started throwing up, bad stomach cramps and having diahreah for about a week every three months. One time I actually passed out. Doctors tested me for my liver gallbladder and anemia. All looked good and it was commented on how high my iron levels were for a girl my age. I also have been diagnosed with ADD and have had horrible leg pains, like growing pains my whole life. Is that something too?

Just recently a doctor suggested that I try a gluten-free diet. I got the test and my IGG i believe was positive, the rest negative, so she said try it out and see if it is worth it. I have been for the last week and i have still had stomach aches after everything i eat, and gas. Today i actually threw up again and had horrible cramping. I have been so careful that none of this makes sense. Can anyone relate to this? Am I diagnosed wrong?

I am really at a loss of hope right now. Does it get worse before it gets better? Please help me understand anyone. Thanks -Bessie

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Guest aramgard

Bessie, Are you also eliminating dairy? Many Celiac's need to eliminate dairy when first going on to the diet. After a few months, you should be able to add dairy back, a little at a time. Also you have not been on the diet long enough to show significant progress. Slow down, eat basic foods, don't vary too much at first. Read labels carefully. For instance most dry cereals contain barley malt, which is a no-no. Eat very simply at first and add new foods one at a time every 3 or 4 days. This may be difficult, but it's certainly better than needing to take medication or being desperately ill all of the time. Good luck, Shirley

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Bessie,

I agree with Shirley that you need to give the gluten-free diet a bit longer before you decide it's not working. Also, what foods are you eating right now? Gluten can hide in SO many strange places (including in some brands of WHITE RICE, I just discovered--sometimes the vitamins they spray on the rice to "enrich" it are derived from barley!). Are you taking any supplements or medications that may contain gluten? What about your shampoo, conditioner, hair spray, and make-up? It sounds to me like there may be some hidden gluten somewhere in your life, and if you can track it down and kick it out, you just might start to feel better in short order. Good luck to you!

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Hi again and thanks everyone! Well, Im not a "celiac" yet just gluten intolerance i think and my doc wants me to see if it is worth going gluten-free. I have not eliminated dairy and have had alot of it and feel fine after wards. No reaction.

I dont understand how careful i need to be, like shampoo or conditioner? I do take medicine for ADD. I take Adderall and should find out about whats in that. Is it possible to get gluten ingested by just being around it? I work at a preschool and am constantly around crackers and flour play dough and who knows what other glutenous items.

I agree that i need to give it more time. I think i just panicked after i threw up.

Im also very afraid of gaining weight as I have been anorexic/bulimic in the past. Is it true that there is a lot of weight gain in this diet? I may post that question in the weight place to find out as well as a question about Adderall else where.

thanks for the food lists, they have helped out a lot! Thanks for letting me figure things out as well. -Bessie

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Bessie,

If you work in an environment that contains a lot of gluten, I would suggest washing your hands frequently and being especially thorough about it right before you eat. Gluten-containing dust can be transferred hand-to-mouth, and all it would take is a tiny amount to make you sick. Similarly, shampoo and conditioner can end up in your mouth, especially if you stick your head in the shower stream to rinse you hair. It is better to avoid gluten whenever you possibly can, just to be safe! I hope this helps!

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Bessie, one thing is for sure: in your case, some sort of diet is recommanded.

Avoid any products that are complex in nature, and go for the simplest foods possible: rice, carrots, chicken meat, all boiled.

In 3 weeks examine the effect of the diet.

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Bessie, regarding your medications, I would suggest calling your pharmacy and explaining you have a gluten allergy and asking them to investigate whether or not there is gluten in them. Good luck!

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You need not be too paranoid in your endeavour, like examining shampoos or every product that you use for other purpose; just pay attention at foods, and generally try to eat everything made in the house, simple.

It does take a while (>1month) with ups and some downs before the gluten-free diet shows full efficiency.

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I am 19 and have been gluten-free for over two years now and I am still healing. I am actually steadily loosing weight and gaining muscle and the texture of my skin and hair has improved tremendously. Speaking of hair, gluten IS often in shampoos, conditioners, soaps, lotion, makeup, nail polish etc and YOU DO HAVE TO BE CAREFUL (not paranoid) and make sure all of these items are safe for use.

You should also consider other intolerances, but it can take a while before you really begin to see changes. Also, know that some people feel worse before they feel better since the body can go through a sort of withdrawal period, as happened to me.

I would avoid mainstream products altogether for a while and really do your research as to what is okay and what is not. As far as makeup, toiletries etc. are concerned I've had some success with Burt's Bees, Tom's of Maine and Johnson & Johnson (baby shampoos,) but I always contact the companies for a list and a statement before I use anything since they do make some gluten containing products.

My general rules for food are as follows:

-If it don't say "gluten-free" don't eat it. That applies to anything prepackaged. Sometimes companies won't put it right on the label, but have it on their websites instead; look around.

-Still eat healthfully. You can be completely gluten-free and still be unhealthy if you don't eat regular well rounded meals and snacks.

-Be VERY cautious if eating out. It's best to bring a little something with if you go out with friends and stick to wine and water. Otherwise it's Russian Roulette.

-Be festidious about crumbs. They're not as innocent as they look and they can't be killed like a germ so avoid them like they're worse than the plague.

-Stand up for yourself. Don't let people talk you into eating anything. You wouldn't drink diluted bleach because someone told you it was lemonade.

-Don't worry about how you appear to others. Thirty years ago people were laughing at people who were allergic to peanuts; thirty years from now we'll be laughing at the people who laughed at us.

-Act nonchalant. Act as carefree as possible while still being mindful.

-SHARE with others. Find some gluten-free foods or products you like and share them, normally, with others. It can really help others accept your dietary needs.

-"When in doubt leave it out"

Good luck (and as far as gluten in concerned: Good riddence!), Solveig.

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Guest aramgard

For those of you who have a problem with fragrances in shampoos, try California Baby supersensitive shampoo. It's terribly expensive, but it goes a long way and you don't need cream rinse. It doesn't have lauryl sulfate in it either which some of us, including me, are allergic too. Shirley

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I would have written sooner but my internet has been down.

Thank you all so much. Im still afraid im not taking this seriously enough. It has been about a month and besides that one vomiting episode I have been ok. I havent noticed much of a difference besides stomach aches and bowel movements.

I think I am just too scared to be too careful. Does that make sense? I have already cut out so much and am eating so many "safe" foods that I dont think i could do anything else. Im starting to see problems with going on vacation or even simply to a friends house for the weekend. I feel so guilty for some reason, like they have to be so careful of me. So, I tell them no and just stay home.

One of my friends didnt get that she had to be careful adding spices to our guacamole dip. She instinctively went for the cabinet and after she sprikled in the first one I caught her and told her she couldnt just do that anymore. She looked so annoyed and kinda rolled her eyes as i checked the pepper label. Was I out of my mind? Have I gone to far or is this normal? After that incident I decided i needed to cool down and have been pretty relaxed ever since. I guess im so confused because at the same time, Im so uptight!

Anyone feel like this also? Thanks again. -Bessie

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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