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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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Hi everyone,

Thank you all for the suggestions! I had a few questions in the old thread that didn’t get answered so I was wondering if anyone out there could address them? I copied and edited one of those earlier posts below. Thanks-

Misskris, I had not considered candidia before but it makes sense and I have had a canker sore for over a yr and a half now. I realize cankers are thought to be caused by viruses and candidia is a yeast but why would just one "arm" of my immune response be challenged?! Is there an easy way to determine if one has systemmatic candidia? I have to see my dr in a couple days so I'll mention it to him as well. BTW, I have to inform my doc that I have determined I am gluten intolerant and suspect I am a celiac. He is great; won't be threatened by a patient telling him their ailments! High time to get him thinking along these lines too.

Wendy, I do have confidence that I will get better but I am so worried that I am getting gluten in my system from somewhere I haven't identified yet. Does the body start healing even in the presence of minimal gluten or can no progress be made until one is absolutely free of it? As for the hematuria, the urologist was gung ho to do the dilation without considering any other possibilities--to be fair, this was before I discovered my gluten sensitivity but he was just too sure of himself and EAGER for my comfort. I do have a heart murmur but it has never been noticeable to me. Again though, it's a good thought since I hadn't connected the possibility of my arhythmic breathing and subsequent anxiety to a heart condition--assumed it was related to my asthma since both problems started after the wildfires (2 yrs ago), but that was also the time when I started the Blood Type Diet, discovered a "problem" with wheat and then went gluten-free. And found the beer thread, thanks! Unfortunately, none of these options are available in CA, not even the ciders!!! The owner of a local liquor store is going to try to get something for me so I’ll know by the end of the week.

ClevelandBob, 2-3 months of withdrawal? Do you mean that symptoms just get worse for awhile after going gluten-free? How would I know whether it's withdrawal or whether I simply haven't found all of the gluten sources in my life?! I definitely am much more sensitive to gluten than I was just a few months ago. Thanks for the welcome!

And I can't tolerate dairy; makes me as or even more sick I am now suspecting eggs and soy and have eliminated them for the past couple days. I follow the Blood Type Diet and therefore don't eat alot of other things as well, like no corn, no potatoes (sweet potatoes are good though), no peanuts, etc. Any of you out there follow the BTD too? So this means I can eat rice! Really though, it means I can no longer trust any food I do not make myself. For ex, all of the lovely gluten-free breads out there have either sunflower or safflower oils, avoids for a blood type O. My husband thinks I should go on a complete elimination diet and then introduce one food item at a time!! Seems I may indeed have to.

I thought I was gluten-free, hoped I was getting better. Now I realize I've been getting gluten daily from Hornsby's cider--stopped drinking it the week before last. Stopped using hair conditioner with wheat germ oil last week. Hunting down other sources; cat treats, one flavor of Nutro dog food (others OK), suspecting everything now. Still using all the teflon pots and pans, but it has been a couple years since any flour was used in them for gravies...so all the gluten would've worn away in the following two years, right? Can't afford a new kitchen!

Thanks,

Judi

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Hi Judi,

I was on the BTD when I found out about gluten. I stopped the diet since i wanted to pursue testing and couldn't do it while on a low gluten diet. Once I was able to be tested and started the gluten-free diet, I wasn't able to follow the type A diet without feeling like I couldn't have ANYTHING, so I gave up.

I did feel very good while following the diet and occasionally conscider following it again, but it would take a lot of work to follow it closely.

As for some of your other questions, I think I can address a few.

When you are healing it is best to be as gluten-free as possible. If there are steady sources of contamination, however slight it will slow the healing process drastically. I sort of look at it as three steps forward, two steps back...you will still heal, but very slowly. And most people will continue to have symptoms.

If you can not afford to replace your pots and pans, then at least make sure they are very clean. You should NOT continue to reuse cast iron, or baking stones as they do absorb the particles of gluten into the surface and it is impossible for them to ever be cleaned well enough to remove the gluten. There is a debate as to whether teflon absorbs the gluten, or if it gets caught in the scratches of the teflon. I found it easier to just get rid of them and replace them one at a time (getting the most used size pan first). Stainless steel shouldn't be an issue. Gluten doesn't stick in the metal.

I don't know about the gluten withdrawl or the candida questions, sorry. :(

God bless,

Mariann

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There really is no *valid* way to test for systemic Candida. There are tests available such as stool tests but the problem with these tests is that candida exsists naturally in all of our bodies so nobody really knows how much Candida is too much. How much candida in the stool indicates an overgrowth? Also one person might be more sensitive to candida than another person so there really is no widely accepted test. Also mainstream doctors don't even believe in Candida overgrowth in the intestines. I was tested...my doctor (who is an alternative doctor) suspected systemic candida. She called today with my results which were negative for candida, parasites or other pathogens. YEAH! I was given the green light for eating all the good foods I've been missing out on the past few months. Incidently I got my Enterolab results 2 days ago which were positive so I am free to eat anything I want as long as its gluten-free. :D

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Hey Judi,

I have the same problem with you but THREE doctors told me that if I had systemic candida, I would be in the hospital almost on my death bed. They say your mouth would be totally infected with thrush and you would not be up walking around or anything like that. Apparently it is that serious if it's in your blood.

My doctor also doesn't believe that candida in your gut can cause problems. He's a GI specialist, rated the top GI dr. in Phoenix, but he says we all have candida in our guts and that the balance can be off but that it is not going to cause such massive problems as we think. It seems to me that the holistic doctors are the ones who believe in the candida issue while the regular MD's believe it's not really a problem for us.

I don't know who I believe but for myself personally, stress and anxiety were causing the majority of my problems. After I started some anxiety meds, almost all of my symptoms have ceased.

My GI dr. also said testing the stool isn't an option because he said he could find candida in anyone's stool as we all have it in our guts...interesting. I know some people on this board have had dr's diagnose them with candida issues of the gut, but I guess my dr. will never believe that...oh well. I'm feeling better so it's OK with me. If you can't find a dr. who will diagnose it I suggest a naturopath. They believe strongly in the candida connection and they have meds that can help.You can also try your local health food store for Yeast Defense, TriLac, and many other of the yeast fighting meds that you can get over the counter. One other thing I've heard is that some strains of yeast are defiant to the meds. That's probably why the Diflucan never worked for me.Anyways....

Hope you get to feeling better soon,

Jennifer

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Hey Judi,

I have the same problem with you but THREE doctors told me that if I had systemic candida, I would be in the hospital almost on my death bed. They say your mouth would be totally infected with thrush and you would not be up walking around or anything like that. Apparently it is that serious if it's in your blood.

<{POST_SNAPBACK}>

This is exactly what I was told as well...the guy was very condescending and pretty much ridiculed me for even mentioning systemic candida. He got very upset and even though my appt. had nothing to do with Candida we spent the whole time debating over the exsitence of candida which was not my intention. :angry:

Now that I've tested neg. for candida and pos. for gluten intolerance I'm a liitle skeptical about systemic candida to say the least. I think candida overgrowth in the gut can definately occur but probably not to the extent where it causes massive problems as Jennifer stated. I think if there is a candida overgrowth its probably due to underlying causes which would be the main reason for the health problems.

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Mariann, yeah, I can see the problem with being a celiac and trying to follow the BTD as an A. I am an O and what is recommended for me is lots of meat and veggies. Gotta say though, with the gluten issues now, following the BTD too is very restrictive. I am so scared I'll hurt myself further if I eat a BTD "avoid". As I have said in another thread, I do believe the science behind the BTD and following it was how I determined many of my food allergies and the gluten sensitivity. I will continue following it and once I am completely recovered, in a godzillion years, I may consider re-testing some of those avoids to see how I feel eating them then. :( Thanks for your other helpful comments too.

Rachel and Jennifer, I have been wondering how I could have a yeast problem when I don't eat alot of sweets. I have 1 tsp honey in my mug ot morning yerba mate tea and then 2, maybe 3 Pamela's cookies in the evening. Other carbs are pretty minimal. I am intrigued by what you said Jennifer,

"I don't know who I believe but for myself personally, stress and anxiety were causing the majority of my problems. After I started some anxiety meds, almost all of my symptoms have ceased."

I am a rather tightly wound up person. I have been getting anxiety "attacks" for over 2 yrs now and also think some of symptoms are related, or at least, the symptoms would get better if I could relax. This is one reason why I gave up coffee 2 yrs ago. I think my adrenals have been "shot" for many yrs now. Would you mind telling me more about your symptoms and how they were alleviated by the meds and what meds?

Thanks everyone,

Judi

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This is exactly what I was told as well...the guy was very condescending and pretty much ridiculed me for even mentioning systemic candida.

<{POST_SNAPBACK}>

Yep, I was told pretty much the same thing, though with something that was less condescention and more frustration with patients following this line in general.

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Ok, here's the post..I found it!

Judi, that is your name! Sorry for the delay..work has been crazy!!

Symtoms:

I, like you, have always been high strung and as a child always had nervous problems. Typical type A personality!

Well, I've had so many health issues and my dr's were urging me to try Effexor, and anti depression, anti anxiety drug. it took me 2 years to try and take meds-I really didn't want to. Finally, when my husband, who is against these drugs, said I should take them, I listened!

I was at the point where I wouldn't even leave my house because I was sick all of the time: dizziness, nausea, diarrhea, hearing my own heartbeat, irritable, heightened surprise response, you name it, I had it.

I also have tried every form of relaxation known to man: Rakii, yoga, stress seminars, exercise, celiac disease's of the ocean, meditation, deep breathing, yada, yada, yada! None of it worked!

Finally I started the meds and I can tell you I am a normal person again! I work 12 hours a day on a normal day and all is well. It has made a significant impact on my life, and let me tell you, two months ago I literally would not go outside of my house.

I don't recommend drugs or endorse them; talk to your doctor about them if you think it's an option for you. Mine were telling me for years to try them; I finally did and am glad I did. It worked for me.

I hope this helps and that you're doing well-let me know! I'll try not to take so long to answer!!!

Jennifer

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Rachel and Jennifer, I have been wondering how I could have a yeast problem when I don't eat alot of sweets. I have 1 tsp honey in my mug ot morning yerba mate tea and then 2, maybe 3 Pamela's cookies in the evening. Other carbs are pretty minimal. I am intrigued by what you said Jennifer,

Judi,

I had a yeast problem at one time but solved it by cutting out honey and replacing it with Agave sweetener, because honey can cause yeast too, from what the acupuncturist i go to said. I was also told to cut out anything sweetened for a while, cut out flours and drink fennel tea made from fennel seeds. Along with enzymes, this really did solve the problem. Here is a blurb from a search I did about Fennel.

Fennel General Information

Fennel comes from the Latin word, "foenum", meaning "hay" because it has finely divided leaves like hay. Ancient Grecian athletes ate Fennel seed to gain strength, but not weight. In the Middle Ages, the seeds were chewed to ward off hunger during fasting periods. Traditionally, the Fennel leaves have been used as a tonic for the eyes, brain, and enhanced memory. Crushed Fennel seeds in tea have been used for centuries to help promote lactation. At one time, Fennel Seed was an official drug in the United States that was used for indigestion. It is also believed that Fennel has diuretic, pain relieving, fever-reducing, and anti-microbial actions.

Good Luck !

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Well, nogluten!, I have fennel growing in the backyard so that's easy enough! What enzymes did you take and how long before you were better? What were your symptoms? I am operating under the assumption that I must have an intestinal dysbiosis and a candida opportunistic overgrowth...

Thanks,

Judi

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Well, nogluten!, I have fennel growing in the backyard so that's easy enough! What enzymes did you take and how long before you were better? What were your symptoms? I am operating under the assumption that I must have an intestinal dysbiosis and a candida opportunistic overgrowth...

Thanks,

Judi

<{POST_SNAPBACK}>

Judi,

I'm happy to hear you have the fennel growing in your yard! I've been taking VS-III enzymes, but I used to take Enzymatic Pearls when I only had Celiac. I was doing better for about a year, but I was recently diagnosed with Crohn's Disease and some other auto-immune problems suddenly.

My symptoms with Celiac were losing a lot of weight (I've always been too thin) but I lost a lot of weight in about a month and developed osteopenia and a secondary hyperparathyroid, so they tested me for Celiac, because osteopenia and Vitamin D deficiencies are common with it.

I'm not sure what intestinal dysbiosis is, so I will have to read up on it. The candida over-growth is a bummer- I hope you're feeling much better soon. Hang in there and take care.

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