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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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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lisa922

Supplements Question

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I was just diagnosed on April 23rd. I'm waiting for the gastro doctor to call me back with an appointment with a dietician and then I'm supposed to see him in a month. I was wondering if any of you started on supplements right away and if you did, did your doctor tell you what to take or did you just do it on your own? I feel like I'm certain I am lacking in a lot of things and am nervous since I'm just starting out. I feel kind of like a fish out of water here! The websites I've been to have been great, but I'm anxious to get some testing done to see how bad things are. The ironic thing is that I had not had much diarhea before, and now that I'm trying to be gluten free, I'm having it! I think the "natural flavorings" thing got me on a few spoons of Breyer's vanilla ice cream and then I thought I was ok this morning having some Quaker brand grits, but that didn't do well either. Also - when you have a set back and accidentally eat gluten, how long does it take to get your body back on track? Thanks for any info!

LISA

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Guest LisaB

Lisa,

Are you still wondering about this or have you found info that helps?

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Lisa B -

If you're still out there, I would like some info about supplements and how to keep from having them make you nauseas. So far, I'm only taking the Viactiv chews, and I am doing ok with them (have a little metallic-type taste in my mouth sometimes after taking them). The last time I tried to take vitamins was in Oct 2003 and I had to stop because they made me so nauseas. I wrote you an e-mail, too. Thanks!

LISA

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Guest LisaB

Hey, I'm still here and I did get your email, I was having a garage sale and couldn't respond until today...whew, I'm glad that is over!

Well, as far as your touchy tummy goes I think (dangerous sometimes to do that :P ) the supplement I use could be just the ticket because they are in liquid form when taken and you could sip on them and they won't "hit" your stomach in one shot. I take Trace Minerals Electrolyte Stamina packets which are in ionic form (easily absorbed) and have just about everything in them, but especially high in C and Bs that we need. And more importantly, nutrients are dependant on one another for absorbtion and they include many trace minerals that we just don't get in our diets anymore, and there is magnesium in there although you may find you need more of that then the packets supply.

You'll find a good article on this site if you do search on the main page and many good posts on magnesium on this forum if you do a search here. Magnesium is something we have a problem getting enough of, if you have hormone problems, sleep problems, bone thinning, nerve problems (to name only a few) you probably need to supplement it until your recovered. I use Mega Mag also by Trace Mineral. I think the other seriously over-looked thing that we need are digestive enzymes, they helped me even before I went gluten free. They help you get the full value out of your food by helping the food break down fully in the stomach, NOW Plant Enzymes are the best we have found, I would think they would also go a long way to helping your stomach sensativity as well. NOW is such a great company, they always list on the bottle if the product is gluten free and they are known for their quality and purity. Enzymes help with almost all functions of the body, they are used everywhere, they are an integral part of the immune system as well and will help your body fight off infection, for some of us it has gotten to the point that we have very little immune strength left.

For immediate relief of stomach and intestinal upset, Pepogest (or another enteric-coated peppermint oil capsule) are GREAT! Back when I needed them, they were a life saver! GSE or Grapefruit Seed Extract is another WONDERFUL thing to take for your tummy and intestines, helps so many things, I buy the liquid form and put it in empty capsule since it taste pretty awful. Kyolic Garlic, also great...o.k. your probably getting bogged down by now, but those are the things that after spending a not-so-small fortune on supplements, help the most of them all. It is best to do some research on these things yourself, you'll find loads of info and then you can see what you may have a particular need for.

A great discount source for many of these things is www.totaldiscountvitamins.com or www.vitaminshoppe.com, there are others out there as well. I rarely pay full price at a local health food store anymore.

If you have any questions, email them, don't feel like your bothering me. ;)

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when a doctor first suspected Celiac last winter, I went gluten-free and my friend gave me some "Isotonix" brand supplements because I couldn't swallow all the supplements I used to take any more (never was good at swallowing pills!).

The Isotonix are a powder you mix with water. It is absorbed faster and more efficiently than a pill form. I've heard that the traditional centrum-type don't get absorbed much at all before being expelled by the body. It can take hours for it to even dissolve completely.

Anyway, they are all gluten-free, and they have ALL kinds. I take OPCs and ORACs (these are powerful antioxidants from grapeseed extract, red wine extract, pine bark extract and all kinds of berries). Also take a multivitamin, calcium (with the magnesium already in it), and B12.

Overall, it's best to know what your deficiencies are before putting yourself on supplements.

I think a multi is always a good idea, and OPCs and ORACs are harmless and extremely efficient at clearing the body's cells of free-radical from oxygen (OPCs) and nitrates (ORACs) - recommended for everybody, even infants, and help with over 60 degenerative diseases. Also, calcium for women is a must! Other than that, Celiac can cause a whole host of deficiencies, so it would be wise to have some blood-work to determine what you need most.

donna

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Oooh, ooooh, oooh! I almost forgot! Aloe Vera juice!!!! Very good stuff for all of the digestive system. Great for heartburn, stomach problems (ulcers, upset, etc.), constipation, diarrhea, irritable bowel, celiac, you name it.

It is bitter, but the brand I take is from Market America (the same company as the Isotonix) and is delicious - strawberry kiwi flavored, and all-natural (and gluten-free!).

A friend of mine who has gastroenteritis "cured" himself by taking that and the OPCs. He went from eating the blandest diet imaginable, operations, and medications to being completely healed and medication-less in just a few months. Of course, every year he needs a colonoscopy, but he's maintained the healthy colon for 3 (?) years now.

Very good stuff!

donna

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WOW!!! Lisa B. and Donna - thank you soooo much for all the detailed info!! I have been worried about how the supplements would affect my stomach and now I feel like I have a lot of options. This is perfect timing, too....I had the blood work done on Thursday - he is checking the fat solubles A, D, E, and K, Folate, and doing an Iron Panel. I tried to get my PCP to do those, but for some reason, she only did beta carotene. The beta carotene was at 7, with 6 being the minimum. I was also at least able to get her to do the B12 and Magnesium - both those were right in the middle of the range. I have one more question - did your doctors prescribe the supplements or did they just tell you what you needed and how much and then you got them yourself? I see my endocrinologist in July and will be bringing my results of the bloodwork so she can advise me on the supplements. The gastroenterologist said he would prefer she handle that. Thanks, again!!

LISA

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Guest LisaB

My Mom and I both have been chronically ill most of our lives and she went thru the whole Dr. route all over the country and got no where, so although there are good docs out there we didn't find any...needless to say, we have done this on our own. No one knows your own body like you do, listen to it carefully, no one can tell you what to do, they can only tell you what they think you should do based on what they know and no one can know everything...that goes for the experts too. Researching things on your own is something that has saved us a world of hurt.

Also, something I forgot earlier, is Cod Liver Oil, great whole food way to get A & D. It is my belief that whole food nutrition is always the way to go when possible, there is so much we don't know about how nutrients work together, but nature does!

Let us know how your doing as you go...I read your other post about the frustration you feel. Hang in there, the body can do amazing repair work once it starts to get what it needs!

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Hi again!

Like I said, I only take the usually recommended stuff: multi and calcium. The OPCs and ORACs are for everyone - weren't recommended by my doc (he never recommended anything - I left him and have a new dr now). My new doctor is more alternative (and VERY good!) and I brought the OPCs to see what he'd say and he said they are fantastic and harmless, great for general well-being (they give me loads of energy!). As for the B12 - pernicious anemia (B12 deficiency) runs in my family so I take it as a precaution. I'd also heard that it is good for nerves (I'm a nervous wreck!) and for energy (but I like the OPC3 better). As for the aloe - it was a recommendation from my friend with the gastroenteritis so I started taking it a month ago and don't have my digestive problems when I'm faithful to it (2-4 oz/day).

Hope you're feeling better!

donna

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Lisa B - Thanks for the encouragement...I definitely need it! Has your Mom's illness been due to Celiac? How about yours? At this point, I'm assuming the Celiac is responsible for the Chronic Fatigue Syndrome I got 20 years ago that I've had off and on since then. It is frustrating to always feel like there is something wrong with you. I applaud you and your mom for doing this on your own. I definitely get frustrated feeling like a hamster spinning in my little wheel trying to accomplish something and getting nowhere. I do really like the gastro doctor I am seeing now, but once again, the typical happens - he was nice enough to order all the vitamin levels so I could bring the blood work with me to my endocrinologist and the lab messed up and didn't do D or K. Those were the two that the girl wrote on a separate sheet of paper because there were too many choices on the computer so she figured she'd be safer ordering them separately. These people just think - oh, well..just have your endocrinologist order it. But, to me..it's another blood draw, and time and insurance. It turns out they said the K is pending, but they said they couldn't do the D with the serum they have. At least they're mailing me what they have so I don't have to drive 50 minutes just to pick it up, so that is good! I just always feel like I'm making the wrong choices, so it is nice to get advice from those of you who have tried some things and had them work! Thanks, again!

Donna F - Can I ask you what OPC and ORAC stand for? I like the idea of bringing the stuff in to the doctor's office to see what their opinion is...although, I have a feeling my endocrinologist will be more traditional and less alternative! I asked her about natural progesterone cream once and she didn't really think much of it. Thanks, again!

LISA

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Guest LisaB

LISA,

Your welcome! Yes, I now know that both of our health problems are basically due to Celiac. We knew we had Candida (she had seen Dr. Truss who wrote "The Missing Diagnosis" years ago and I have all the same symptoms) and had both been diagnosed with Epstein Barr, but I now know that both of those conditions have occured because of being weakened by Celiac along with other factors since these are opportunistic infections. And try as we might, we couldn't get our health to improve although we were able to keep going which in itself is a miracle.

But now we are improving and it will just take time. :) THANK GOODNESS!

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That's amazing....they said I had Epstein-Barr Virus, too, and that was so long ago they were using it interchangeably with Chronic Fatigue. I have been thinking since all this came to a head in early 2003 that I had an overgrowth of yeast. In January 2004, I was going insane trying to figure out what I was eating that was messing me up - I felt like it had something to do with carbs, but I couldn't figure out what exactly. Then I thought maybe it was fat in the foods. I checked out all these books on Candiasis. It really is exhausting feeling like you have to figure things out yourself when you don't have a medical degree, but I can clearly see if I hadn't kept pursuing this, I wouldn't know anything yet. How did you and your mom finally come upon the Celiac diagnosis? Does anyone else in your family have it, too? Gotta go - the kids and I are going to try Family Yoga at the YMCA!!!

LISA

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Hi again,

OPCs (Oligomeric Polyanthocyanidins) are the worlds most potent antioxidants. They are found in extracts of red wine, grapeseed/grapeskins, and pine tree bark. They are 20 x more powerful than vitamin C and 40 x more powerful than vitamin E. They can help with up to 60 degenerative diseases. Great for inflammation, arthritis, a MIRACLE for asthma (I know many people who have gone off of meds because of this), and eczema to name just a few.

Within the first week of taking it, I noticed a difference in my arthritis. I started it in November and this spring I've had NO allergy problems for the first time in my WHOLE life! No more asthma, no more post-nasal drip!

It also gives me a noticable increase in energy ALL day. In fact, one day I new I'd have a long night ahead, so I took a little extra in the afternoon...BIG mistake! Didn't ever want to go to bed - was never tired! However, taken in the morning, it carries you right through the day.

It's improves your immunity and cleans out oxygen free-radicals. It literally cleans out you cells! And it's so harmless, even infants can take it. I even give it to my dog. I've seen it give new life to a cat with leukemia too. Vets have used it for years in horses too, so my local Agricultural store owner told me.

ORAC (Oxygen Radical Absorption Capacity) is an oxygen AND nitrogen radical neutralizer. New research is suggesting that ORAC is more powerful than OPCs. Research suggests that eating fruits and veggies with a high ORAC value can slow down the aging process in the body and the brain. And ORAC supplement has the extracts of serveral berries to get a concentration of ORAC (cranberry, blueberry, grape, raspberry, elderberry, black currant, pomegranate, plum, choke cherry).

Free radicals "rust" the body's cellular structure, prompting a whole host of common health ailments/diseases. These supplements clean the body at the cellular level.

I would recommend the book "The Anti-Aging Revolution". The writers (Klatz and Goldman) are world-reknown doctors and have founded the Academy of Anti-Aging Medicine and the Academy of Sports Medicne. They've been on TV several times. They explain a lot about this stuff in their book.

Hope thay tells you what you wanted!

donna

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Hi Donna. Do you recommend any particular brand? And what about dosage? Thanks. Hugs, Carol B

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Guest LisaB

LISA,

We have a lot in common! I think many that suffer from Celiac have gone down the same road, I think the key to unraveling it all is to continually ask "why?". For instance, Epstein Barr is a virus that is related to Mono and when your diagnosed as having it, that only means you have an immune system that allows a high count of the virus to hang out in your system. Everyone in this country (virtually) carries the virus, it just depends how high your count is....so, "why?" why are our immune systems too weak to kick it out? Almost everyone in this country does what it takes to become infected with Candida, why are some infected and others go on to lead a normal life? I think eventually you get to the bottom of it, if it is genetic then fine, if it is enviromental, o.k., but we have to know what to fight, right? Continually putting out fires and not stopping the guy running around with the match isn't gonna cut it. ;) Your on the right road, don't stop until you understand all that you need to...

As far as the Candida goes, that is still an issue with me...there is another discussion on the topic if you do a search for it you'll see all that we all have learned about fighting it. I am getting somewhere, but I have been looking into Probiotics (I can send you some links to look at if your interested) lately because they seem to be what I am missing. Haven't tried them yet, from what I've learned, those with HSOs (Soil based organisms) are the only ones that will truly do much to repopulate your intestines with the good bugs. Anyway, that is a long story!

Donna,

What are you taking? That sounds great! I need more energy badly, the packets I take really help, and so many things are improving but we need all the help we can get.

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Hi Carol,

The only one I've tried is Market America. I know there are brand on-line, but this is a powder you mix with water (I can't swallow pills!) and it's absorbed 95% in 5 minutes. A friend of mine recommended them to me last year when I was REALLY sick and thank God, because I couldn't swallow my vitamins any more. I take all my supplements this way now.

You can find more information about OPCs at www.opc.cc I think this site has a link to another brand that sells it also, but Doctors Klatz and Goldman recommended the Market America brand above the rest - so that's what I use, plus I get them at cost through the company now too so it's more affordable!

Lisa,

That's how I felt. I new those ingredients wouldn't hurt me, but I had NO idea they'd do so MUCH either. I've never gone a day without the OPC since. I've gone off the ORACs a few times, but then I heard it may be even more powerful than the OPCs so I went back on it.

The biggest drawback is their cost. Being healthy always has it's price, doesn't it? Even good food costs more!

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Thanks Donna. I'm sure we have some good stuff. Just wondered what you took. Do you do the recommended dosage or do you take more. I will definately check out that site. Hugs, Carol B

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Oh yeah, dosage...

To start with, you take a loading dose (2x the maintenance dose) for 7-10 days. Goes by weight too. It MUST be taken faithfully (every morning on an EMPTY stomach). If you miss just one day, you'll notice a difference and disrupt your progress b/c it is all-natural and will be completely out of your system within 24-36 hours (?). I know people who were on it a while and missed a day and got a cold right away! I also know people who weren't faithful to it from the start and therefore never saw results.

Let me tell you, there is NOBODY that this stuff won't help! But you've got to take it right or it won't. Now, of course, I've been told by Market America people that the other brands don't work as well (but you know how that goes!) - but there is the testimony of those 2 doctors who push the M.A. brand in their book.

Look up OPC on the web - I'm sure there's more to be read about it and other distributors too.

OH!!! Don't forget the aloe vera! Aloe has long been known to have wonderful healing properties. It also contains many enzymes which play a part in the reduction of indigestion and inflammation. It's great for heartburn, stomach upset, gas, diarrhea and constipation. Someone I knew had gastroenteritis and is no longer bothered by it thanks to Aloe and OPC alone - even went off the meds he used to take.

I HIGHLY recommend ALOE, and OPCs and ORAC - But most of my experience is with the ALOE and OPC. I only know about ORAC from what I've read - and since I've taken OPC faithfully for 7 months now and only ORAC occassionaly, my testimony is on the OPC. But I agree that ORAC could potentially be even better!

Please look into it! You'll be SO happy you did!

-donna

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I have aloe vera in my frige. Need to remember to add it to my smoothies. When I first got this bottle I was down sick with something and not sure what caused it (my IBS was acting up) so I didn't take it and then forgot. Thanks for reminding me. Hugs, Carol B

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Hi Lisa922,

I was just read some of your old threads. How are you feeling? Did the gastroenterologist test you for any nutritional deficiencies?

BTW, I use natural progesterone cream and can't live without it! My endocrinologist isn't non-supportive of the cream but neither is she looking to promote its use.

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Hi, Tammy - thanks for checking on me! I have been feeling rather miserable the last week. I really think I am having another partial blockage of my bile duct because I'm having the same pains I had before they did the ultrasound to notice I had a stone in my bile duct. They did an ERCP w/sphincterotomy and that helped a lot, but now the pains are back! I see the gastro dr again in early August, so I'm sure he'll address it then. He did do the nutritional testing, althought the lab made a mistake and forgot to run the vitamin D! He actually ran them kind of as a favor because I see my endocrinologist in July and he wants her to advise me on the supplements. I asked if he would run the tests so I wouldn't have to wait as long to get results. So far, everything is looking pretty good! Most of my results are in the normal range, and are a little under the half-way mark, so that makes me feel very good!! I am currently taking 3 Viactiv chews a day and will continue with that until my July appt and I see if she wants to increase it. I haven't purchased any other supplements yet, since I'm going to wait for that appt first, but I am going to follow some of the advice I received on this thread. It has been wonderful!! I'm kind of overwhelmed at the moment with getting the stuff in order to have my children tested. I received my kits from Prometheus yesterday and am in the process of getting the paperwork I need from the doctor's office and for the lab. The hospital said to come back Thursday since Tues and Wed are their chemo days, so ARGH, I guess I'll have to wait until then! I wanted to get it over with today, but I don't want to disrupt anyone's chemo schedule - that would be rude! I'm glad the progesterone cream is working for you. I have heard great things about it. I see my gyn in July also, so I am going to ask him to run some hormonal testing to see where my levels are for that. I had to have my uterus removed last Sept. so I want to make sure the old ovaries are doing what they're supposed to.

LISA

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