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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 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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19 posts in this topic

Hi everyone,

I was diagnosed w/ the gluten allergy roughly 1.5 yrs ago. It has been an uphill battle for the majority of that time. I wanted to share some insight with regards to my diet for people that have been recently diagnosed and are trying to get on track. I am not a doctor and don't claim to have a "sure fire" way to get better. If anyone wants to expand on this or correct me, feel free. However, I have almost been able to manage my gluten problem. ALMOST!

Things I've learned:

1) I've have become a darn good cook over the past year! I previously sold restaurant equipment so I already had a decent background in cooking utensils. I purchase a ton of raw food on a regular basis. This comprises 90% of what I eat. I purchase lots of fresh veggies, fruit, meat,(lots of eggs), and dairy products. I also use nuts in my meals if I am %100 sure it doesn't have a wheat additive. My grocery store specializes in whole and organic foods so they guarantee there is no wheat added.

2) I recently used McCormicks spices for a taco salad meal. I had heard that Mccormicks spices were gluten free. If most other celiacs are like me, I assume they eat lots of left overs as it takes time to cook. I had eaten the taco salad for the last two days and have regreted every minute of it. I had a terrible reaction. I highly recommend visiting the gluten free pantry on the net and ordering their gluten free spices. Also, I visit the gluten free mall's website for good sauces.

3) I very rarely eat out. First off, I don't think most of the chefs even know what products contain gluten. I know, I used to work with them on a daily basis. Second, the grease that they use to fry and the (cooking surface) they grill on often contains gluten. I stick with a salad that I know is safe and eat my own stuff later. I have not eaten at Outback Steak House yet. I hear they have a good gluten-free offering.

3) I take Garden of Life vitamens and Probiotics. These can be ordered on the web and are cheaper. I have noticed above average results and I believe all of Jordan Rubin's supplements are gluten free. The two I take (Living Multi) and (Primal Defense) are. These vitamens are not cheap. However, I am a health nut and work out on a regular basis. I have noticed a difference in taking these. Also, I go to the doctor once a month for a B-12 injection. This helps boost your energy big time. I understand that celiacs have a problem absorbing B12 in the intestines.

4) I would recommend that if your taking any medications that you make 100% sure that it doesn't contain gluten fillers. I had been taking Synthroid for my thyroid condition on a daily basis. I recently switched to Levoxyl and noticed a dramatic difference in my symptoms. I am not medically claiming anything. But I do notice a difference with the new fillers in the medicine.

5) Gluten free eating is GOOD for you! Honestly, when you figure it out, you can't ask for more healthy diet. I seriously feel like I am in the best shape of my life. Yes you have to educate yourself thoroughly to get on the correct track and it is somewhat time consuming to cook. But if your like me, I am sick and tired of playing with my health and lifestyle. Honestly, if I am not 110% certain that the product doesn't contain gluten, I don't touch it. You really don't have any choice but to listen to your body if you want to be healthy. In turn, you will be rewarded with good health. If you start with raw food and work from there, it isn't that complicated. This is a matter of survival if you have the problem. Don't play games with your body by being lazy.

6) Gluten free cooking isn't that hard. Some meals I find relatively easy are:

Pasta & grilled chicken: Get gluten free rice noodles, fresh parmision cheese, garlic, olive oil and chicken (I prefer free range). Season your chicken w/ gluten free seasoning (gluten free pantry***) and fire up the grill. Begin to boil a pot of water. Throw on your chicken and boil your noodles. Once done cooking, cut chicken into strips and throw it on your bed of noodles. I use a garlic press w/ fresh garlic and add a couple teaspoons of olive oil. Work these two in and then throw on the cheese. Yummy! *****Substitute noodles for salad for a tasty and fresh delight.

Mexican Salad: Buy some gluten free refried beans. I use an off brand that contains salt a pinto beans. You can also make your own if you have issues. Get onions, green peppers, garlic (always!), salad, 1 lb ground beef, gluten free chips (i use Lundberg rice chips) gluten free taco seasoning (gluten free pantry***) and mexican cheese mix. Brown your ground beef in a fry pan, drain, add seasoning to your liking, water, and vegetables. Cook to your refried beans on low in seperate pot stiring several times throughout. Throw your meat mixture on the chips, then add the beans on top, and cover with cheese and lettuce. That should take on any appetite.

You don't have to be gourmet. Just be creative and search out recipes. The more you practice the easier it becomes. If all else fails, use plenty of spices!!! Trust me. I am a 25 year old male who couldn't cook anything but eggs and meat up until a year ago. Once you know what ingredients are safe to play with you can have a lot of fun. Remember at first, stick to the basics (raw ingredients). Time to get cooking!

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Excellent points!

I have to second the B12 reccommendation but I would reccommend once every 2 weeks at a minimum. B12 has a relatively short half-life and is in and out of the body pretty quick. Also if possible, do the shots yourself. They are easy and pretty painless. You can do them subcutaneous with an insulin pin or intramuscular. Here in Canada you can buy B12 over the counter at any pharmacy without a script. I have seen some websites in the U.S that sell it as well.

B12 is great for energy, digestion, and appetite among other things.

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Thanks for the info but if you heard that all McCormick spices or products are gluten-free then somebody told you wrong. What McCormick does say is that they'll clearly list gluten if it's present. And it is present in some of their spice mixes or marinades. I know numerous people with celiac who use many McCormick products -- particularly their pure spices -- with no problem. There are, however, fresher spices on the market.

richard

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Could someone please tell me how to be "100 % sure" that an item is gluten-free? I've posted this question before but didn't really get a clear answer. I look at the ingredients for obvious words like wheat and the associated words we all know can mean gluten, then I usually follow that up with a call to the company, and trust the answer they give me. Sometimes, however, they don't sound like they actually know what they're talking about! Should I be doing more?

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I'm not sure what else you can do except listen to what others say. I don't buy Lay's becuase I've heard of so many people who have had problems with their products.

The only other thing you can do is avoid processed products as much as possible and never eat out. Something like 20 percent of processed products that a manufacturer thinks are gluten-free actually have gluten, according to a recent study, and contamination in a restaurant is inevitable.

Personally, I avoid the types of products that seem MOST likely to be contaminated (such as cereals or flours made in a facility with flour) and choose restaurants carefully because I refuse to spend the rest of my life shut in my house like a hermit.

richard

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Gillian,

The only way you can be 100% sure is to either only eat "whole foods" like fresh veggies & fruits or meat/poultry/fish (and those you would pretty much have to hunt or raise yourself to guarantee something wasn't added later!). Anything else that is manufactured or packaged is suspect, but that does not mean you can't eat it. Just try to stick to the basics as much as possible. The more ingredients a product has the higher the chance of it having something suspicious in it.

And you are right, some of the customer service reps know even less about their products than we do. Most don't even seem to know what gluten is. And it seems to me that they just read the list of ingredients for that product and because it doesn't say "gluten" on it, they say it is gluten free. It is most important that you educate yourself, and also pay attention to what others are saying. I had one customer service rep tell me their digestive enzymes were gluten-free in the US even though it listed barley on the label (their Canada product is gluten-free and I wanted to know if I could buy it and ship it to the US!). She insisted they were the same product and would not listed to me about the barley. I never got a reply back about the Canada product and went with a different company for digestive enzymes.

Sorry for rambling. I hope you are doing better.

God bless,

Mariann

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Do any of you know if baking soad, cinnamon, and vanilla extract are gluten-free??

Thanks

:)

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One other tip to add during recovery after initial diagnosis is that supplements such as acidopholus & glutamine can help the gut repair itself faster.

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I have yet to find a baking soda, cinammon or vanilla extract that's not gluten-free. Baking soda is always gluten-free. Some people have suggested in the past that some manufacturers might put flour in spices to make them flow better but I have yet to find anybody who does this with pure spices. Some spice mixes MIGHT have flour in them but even that seems to be relatively rare. And although I was warned early on to check vanilla extract because of alcohol used in the process, I have yet to find one with gluten. (And I believe the scientists who say distilling removes the gluten anyway).

richard

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Terence,

You mentioned that you saw a big change in symptoms when you switched from Synthroid to Levoxyl. My understanding is that Synthroid IS gluten free, no? SInce I also take it daily I am interested in that question, but also in what exactly you experienced in the way of symptom change with Levoxyl. Thanks.

Kaylee

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Terence, Thank you for your post. The common theme I have noticed while reading it is that >you< have taken control >yourself< for what you eat. It is something we all need to do.

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Trader Joes has a vanilla extract that they say is gluten free. I use it all the time with not problems but that doesn't really count since I don't get bad reactions maybe mild stomach aches.

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Tones Vanilla, Kroger Vanilla, McCormicks Vanilla -- they're all gluten free.

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Kaylee,

I contacted Abbott Labs directly to inquire about there ingredients. The individuals I spoke with told me that the suppliers of their ingredients all claim that they are gluten free but they (Abbott labs) do not independently test for gluten. Levoxyl is essentially the same drug but with different fillers. I switched and have noticed a change. For example, when using Synthroid I had little or no control over my frequent bathroom visits in the morning. Now for the most part, I have more control over when I go and the frequency has diminished. I might be "ultra" sensative to even the slightest amount of gluten? But I have noticed a difference. Also, my philosophy toward companies has changed substantially over time. It is my personal opinion that if a company responds to a gluten inquiry without 100% certainty, than they really arn't guaranteeing anything. I read replies from various food manufacturers that state that they do x y and z to prevent gluten from getting into their products. But at the same time, they won't tell you that there products are 100% gluten free. I put two and two together and assume that at one time or another, I'll probably ingest gluten when consuming their products.

I hope this is helpful. If nothing else, It might be beneficial to give Levoxyl a try if you are experiencing negative symptoms.

Have a good one,

Terence

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The problem with companies that tell you they do test for gluten (very, very few actually do this and I don't think any of the big mainstream companies do) is that it's impossible to test for zero gluten content. So a "100 percent" guarantee by anybody really means nothing at all.

The companies that tell you the product is not formulated to have gluten but they don't guarantee what comes from their suppliers, are simply telling you the whole truth. Unless the company has complete control of every single thing that goes into every single ingredient in a product, there's simply no way to truthfully guarantee no molecules of gluten whatsoever.

I listen to what a company says and what others who have used the product say and then make a judgment. Otherwise I'd go insane worrying about gluten, and I refuse to do that.

richard

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I wanted to add one more peice of information that I left out of my previous post/ short novel. I often see posts on this sight regarding depression. I can relate to where individuals are coming from. When I first developed the problem (3 yrs ago) I was going through serious issues in my personal life along with the gluten problem. There are a few things I want to point out that I think relate to the gluten free diet and overall well being.

1) If you have been recently diagnosed with the celiac disease and are just now trying to get on track, you have to take in to account the current condition of your body. You are probably malnourished and lacking many of the essential vitamens and minerals that allow your body and brain to function properly. Also, you are obviously experiencing terrible side effects from ingesting gluten. If you are feeling depressed, I stongly feel that there is a light at the end of the tunnel. Once I began to get my diet under control, things started to really brighten up. I became focused, energetic, and happy for the first time in years. This is due in large part to my body functioning properly which in essence effects everything you do. Give it some time. You will become a strong independent individual when you have control of your diet.

2) If your health condition permits, try to work out. Working out in combination with the proper gluten free diet will help revitalize your body. It will help bring the lacking nutrients to the appropriate malnurished sights and speed recovery. There are also scientific studies that prove that working out combats depression. I typically lift weights and jog about 4-5x a week. You don't have to kill yourself. Even if you jog or walk fast 3x a week you will notice results. I think the two most important keys to working out are consistency and determination. These are two words that you will become very familiar with when fighting your gluten problem.

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Richard,

You have a good point. In a lot of ways I think you have to fine tune your diet and find out what works best for you. My assumptions and opinions aren't based on any facts that I can substantiate without question, but my personal experience with these products.

Take care,

Terence

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Neff- I have been gluten-free for about 3 months now and am still in and out of depression. Do you know how long it too you to realize there is a light at the end of the tunnel and you felt better emotionally? I also exercise 4-5 times a week. I would love to know when I am going to get out of this rut that I seem to be stuck in.

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Jaimek,

As I'm sure your aware, our bodies and circumstances are different. Therefore, to give you an accurate response would be a long shot at best. But to be completely honest, it took me 8-12 months to regain my balance so to speak. A large part of my recovery can be attributed to this website. I began visiting celiac.com around 2 months ago and have made substantial progress since. I have also made changes in my lifestyle to reflect more health concious behavior. For example, I put a lot of time into figuring out what foods I should consume for optimal living.

When I was depressed, I tried as much as possible to gravitate toward the things I enjoy. For me it is music, art, and architecture. You have to remain as persevering and optimistic as possible. When you do start to make a turn for the better, I think you will become a more poised and strong individual as a result of the experience.

Keep fighting,

Terence

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    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.   I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by celiac disease, another medical condition or it just turns out to be a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
      Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.
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