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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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Guest DanceswithWolves

I'm Getting Recalled!

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Guest DanceswithWolves

Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure::unsure::unsure::unsure:

I'm not sure why they want me back to take out more blood...maybe the first batch got tainted or spilled?

What should I do? Should I eat some crap food before I go into the hospital this Monday or Tuesday before the Celiac test? I need to ask them if they've already completed that test.

I also have an appt. to see a Gastro-doc this Thursday. I think he just wants to talk to me before any endoscope is done.

I'm still taking this Clidinium for IBS, but it really makes my stomach feel sick.

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Weren't you eating alot of stuff w/ gluten in it before you got tested? It seemed like you were if I'm remembering correctly. I would find out ASAP which test they need the blood for. They may have already completed the Celiac test...in which case you wouldn't need to worry about it.

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Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure:  :unsure:  :unsure:  :unsure:

Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.

Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.

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Guest DanceswithWolves
Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.

Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.

<{POST_SNAPBACK}>

Well, I guess I'm screwed then.

I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(

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Well, I guess I'm screwed then.

I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(

<{POST_SNAPBACK}>

It probably would come back negative but there is a chance it could come back positive. It depends how high your results would have been and how much the gluten free diet brought the # down.

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I was recalled for bloodwork too only to find out that it was because the first sample I gave broke in the centrifuge!! :(

I had a repeat bloodwork 13 weeks gluten-free and it was still positive. It was much better but still positive. It all depends on how much damage you had before going gluten-free. I would still have it done now and if it comes back negative go back on gluten and try again in 3 months, unless you think that will make you sick then just stay gluten-free, and know that you most likely have celiac. A positive response to a gluten-free diet is a pretty good indicator!

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Guest DanceswithWolves

I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.

Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist. :blink:

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I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.

Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>

For an endoscopy its the same as blood tests and you NEED to be on gluten for a while before getting it done. Biopsies are already hit or miss and a negative one can't rule celiac out anyway but if you are gluten free or just eat some before testing that would be just useless.

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I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>

Thats pretty much how I was before going gluten-free. I joined a gym so I could use their sauna and steamroom and they gave me a free consult. trying to get me on some program. They did all the measurements and I had like almost no bodyfat. DUH..I didn't need a machine to tell me that! The guy thought it was great...even healthy to have such low body fat. I was like "Can you not see that I'm wasting away?" :blink: I don't see whats healthy about that....and "NO...I don't need a personal trainer at this time...what I need is a good doctor." :rolleyes: That was before my diagnosis..I'm gaining now. :D

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Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.

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Guest DanceswithWolves
Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.

<{POST_SNAPBACK}>

Well, what I'd like to know if there's any real noticeable damage done down there. It's funny, though ever since I started really researching this and buying gluten-free foods, I'll notice that my mother and father belch quite a bit. When I said something just etasing them "See... you have it too!" LOL , They were like "Everyone belches". If my stomach starts making noise my parents just say..."you're just hungry". I think most of their comments are too calm me down.

I'm on Prozac right now...Day 14. I am keeping a log of symptoms I feel every day. I'll jot down anything.

I'll probably be told that I just have IBS. I tried exercising yesterday and I had a hard time doing 20 push ups. I lost much of my weight around my torso and my legs. I used to have a butt, too. LOL

I will keep that in mind about scheduling the Endoscope further down the road, even if it means I have to eat Gluten again, and take my chances with the fatigue and IBS.

I'll keep u all posted!

Thanks again for being there! :D

Erik

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Guest DanceswithWolves

Just got back from the Gastro Doc.

After asking a series of questions (more phycological) he went to his computer and linked up with my other doctor for the results of at least some of my blood tests.

He then tells me "You don't have Celiac Disease". It's almost like I didn't hear him say it at first. "You have IBS" He listened to my stomach and took my blood pressure.

So, I told him that from what I've read and heard that if I've been Gluten-Free for awhile now, that wouldn't the test be naturally negative?

He suggested that becuase I cut out all the foods that I've been eating normally before my move to Texas and the stressful job, that is why I lost the weight.

SO I said, "should I just start eating tons of junk food then?" He suggested I eat what I like. He thinks I have reduced any body Fat becuase I am not eating stuff like donuts, cake, etc. He suggested putting back on the weight and then we can draw more blood and test for celiac disease again. I should keep taking my Clidinium for the IBS and stay on the Prozac. I meet with him again in mid-October.

What a humbling experience. Now I feel that maybe I just obsessed and "created" all my symptoms. I even told him about the chills in my hands and feet, but maybe it's because my body is not taking in enough fat content. I know you need fat to maintain a healthy body to some degree.

He's sending me a copy of the results.

I think I'm gonna eat a pizza and drink a beer. F- it.

:(

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Guest nini

Erik, keep in mind that IBS is just a catch all terminology the medical types use when they don't really know what is causing your probs. It is a SYMPTOM, not a diagnosis. So many think it is a definitive diagnosis and it is not.

My suggestion... if you are feeling badly, go ahead and try the diet and forgo any further testing UNLESS the diet doesn't help you at all. But give it time, several months at least, before you give up on it.

(My little disclaimer... I work in an alternative health care field: chiropractic and massage therapy, and do not have much faith in the medical dr.s at this point. They missed my dx for 34 years and I almost died because of it.)

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Guest DanceswithWolves

Well, it's been "Day 4" of eating . I've had pizza twice in those four days but I am still going easy on the bread. I woke up this morning and my hands were like ice(even before I took my Clidinium capsule for IBS) I think these pills are time released or something. Some of the side effects are "yellowing of hands" which I have, but I also have very dry hands. It's so strange. Eight months ago, I was taking PPI's almost every day because of my bloating and I had the chills back then; I wasn't even on the Clidinium. Maybe I am just highly sensitive to all these meds?

I'm drinking hot teas all week and it's still summer! :huh:

I haven't heard anything back from my tests besides the gastro-Dr. pulling up my chart and saying "I don't have celiac disease".

Like I said before, he wants me to eat donuts, cake, breads and other stuff to fatten up.

Maybe that's why I am so cold at times.

I am still keping a journal of any symptoms that pop up along the way. Mentally, I feel a little sharper, probably because the Prozac is starting to work. Even though I had to work all weekend, I felt pretty good.

:)

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Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die. Maybe you can try Enterolab...thats what I did and everthing came back positive.

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Why do you need a positive test result to choose to stay on the diet? Is it to justify the cost? Did you feel better on the diet? Were you successful at being 100% gluten free for any extended amount of time? I don't think there are any benefits to being properly dx with Celiac. No one has to get a dx to go vegan.

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Guest DanceswithWolves
Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die.  Maybe you can try Enterolab...thats what I did and everthing came back positive.

<{POST_SNAPBACK}>

This is so confusing I could cry. I mean, I know everyone is trying to help me, but in all honesty, I don't know who to listen too. I was pretty much eating gluten-free foods (to my knowledge) and I think it's just my metabolism that's all screwed up. I'm just gonna eat and not worry about it. I cant stay in this mental state I'm in. If IBS is a symptom of Celiac, then I will just have to put up with it, and stay away from spicy & fried foods.

I talked to a co-worker of mine and he's a skinney kid too. He went to a fitness trainer and that guy told him to put on weight he would have to eat SIX full meals every day. Seriously, who has the time or even the money to do that? Rediculous.

Everyone is made differently. I'm not trying to be a model on the cover of Men's Health...but I do want to gain some weight back.

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Erik,

I have to agree with Matilda...I don't think you went gluten-free for very long at all and in those few weeks you were slipping up and eating gluten. I think you'd have to be 100% gluten-free if you expect to see ANY improvement. I've gained over 10 lbs. now but if I mistakenly ate gluten a few times I'd easily lose it all over again as I'm not nearly all the way healed yet.

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I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.

You were never completely gluten free what I could tell because you were slipping up alot.

Most doctors are worthless when it comes to celiac.

If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.

Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.

The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.

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Guest DanceswithWolves
I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.

You were never completely gluten free what I could tell because you were slipping up alot.

Most doctors are worthless when it comes to celiac.

If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.

Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.

The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.

<{POST_SNAPBACK}>

All I know is this: The doctor wants me to eat normally and to put some weight back on. I've had members on this board tell me that I have to have at least 3 months of Gluten in my system before I get checked for celiac disease. I have til October 11th to attempt to put weight back on, and then he will suggest another blood test for celiac disease. I still haven't received all my results back from the other blood tests. I will know that on Sept. 27th. I will tell my regular doctor when I go back that the Gastro doc told me to just eat normally, even if it makes me sick.

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email your stupid drs a link to this discussion so they can see for themselves your struggle to get healthy and how they're not helping. :o

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I cant stay in this mental state I'm in.

<{POST_SNAPBACK}>

I hope you find some resolution soon. Please be aware that mood altering drugs can be very dangerous for celiacs, you sound real depressed and your injesting two, the prozac and the valium that is mixed with the antispasmotic in the clidinium. Also celiac disease itself can cause serious depression, being gluten-free negates the need for medication. As someone who did not show up on tests for years and years and years and has two young adults, one who has permanant extensive scars from cutting while on prozac and almost committed suicide I have to bring this up to you. Please be careful and try to keep in mind that any depression is something that will pass. I also vote for the try the diet strictly for a couple months, why American doctors want us to poison ourselves to prove something that can be 'proved' by strict dietary compliance is beyond me. $ maybe?

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Guest DanceswithWolves

Fear not.

I ain't going out like that.

It's kinda weird, I can tell when the Prozac is kicking in because there's this sudden "rush" I get. Maybe 3 seconds and it's gone. I think it's the serotonin flowing. :)

Hard to describe but I am familiar with the feeling.

Trust me, I doubt I'm going to go back to that same Gastro doc. He told me I have IBS and I should just eat whatever I want and not worry about it all. Try to put some weight back on. Now, let me get this straight, doc....you WANT me to eat food like donuts, bread etc., even though all those wrong foods are what gave me IBS in the first place?

Right. For instance, tonight at work I thought, ok try Burger King. Maybe a chicken tender crisp sandwich. Well, sure, it tasted great going down. But within 45 minutes not only was I belching really loud, but my whole back started to ache. Now, I realise I have been on my feet all day....but other nights when I eat maybe a frozen salmon fish dinner with rice...I'm fine.

I guess most of you board members are right. I either admit to myself that I am a celiac and go totally Gluten-Free without the doctor's opinion, or I continue to eat everything gluten; put up with the symptoms, and then get re-tested in three months just so I can have that little paper stating that I have celiac disease.

If I go back to that same Gastrologist still weighing either the same or less...maybe then it will sink into his med-school head that there is something wrong with me besides IBS. :angry:

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Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests.  I am glad cycling lady responded. I immediately thought of her.  I know when I am on gluten my thyroid feel off. I have been checked 2-3 times in life and I test "normal" , but I feel it is faltering. My mom (a nurse) after all this stuff stated you might be subclinical, enough you feel it, but the test doesn't catch it. I take comfort in her wisdom.   Good luck on y our journey
    • Yes, even with a positive on the genetic test and feeling better on a gluten free diet, does not mean you have celiac disease.  You could have a sensitivity (all the symptoms, but no intestinal damage) or you could have issues with FODMAP foods (wheat is one of them).  The gold standard is still the intestinal biopsy.  Again, if your antibodies were super high, then odds are you would have celiac disease.  Really nothing elevates  celiac disease antibodies super high other than celiac disease.  They might be slightly elevated for other autoimmune disorders. I will share my story.  My hubby went Gluten Free 16 years ago per the POOR advice from our GP and my allergist.  Oh,  the diet worked after a year of adjusting and making mistakes.  But does he really have celiac disease?  We do not know and he refuses to do a challenge.  Feeling good trumps feeling sick.  Me?  I went in for a routine colonoscopy (yep, I am over 50) 12 years after my hubby went Gluten free.  My GI looked at my chart and noted my life-long issues with amenia.  I have two kinds of anemia (one is genetic).  The iron-deficiency anemia is what my GI noted.  Despite repeated supplementation, I still had it even after going through menopause.  He ordered a full celiac antibodies panel.  He scoped  me from both ends and found intestinal villi damage.  No disputes.  FOR SURE.  And I needed that diagnosis because I did not have GI issues at the time and worse yet, I knew exactly how a gluten free diet was going to impact my lifestyle.  You bet I was in denial, but the lab results do not lie.   My hubby would be the first to tell you that I get more support from family, friends and medical staff.  They believe me.  Him?  Some doubt (but we know better).  With my diagnosis, I was able to get the full celiac panel for my daughter and  have her thyroid monitored).  No fighting with her doctor or insurance because celiac disease is definitely genetic.    Two months into my diagnosis, I fractured my back doing NOTHING.  Yep, I had osteoporosis thanks to celiac disease.  It has been easy to get vitamin deficiency tests, bone scans, etc.  because I have a diagnosis.  Even my new GI has been supportive especially since I gave him hard copies of everything for the past 20 years with a summary cover sheet.   The cold?  My SIL was always cold.  Her thyroid was and is fine.  Now she went through menopause.  She is always hot now.  Having flashes, wearing light layers and even wearing her hair up.  So, you might have to wait a few decades. 😆 to get relief. The problem with autoimmune issues is that symptoms often overlap.  My doctor and I suspect  another AI issue, but what am I going to do? Take drugs?  No.  So I just keep moving forward.  That is something else to consider.  Just keep in mind your family history and get tested if needed.   You know your particular set of health circumstances.  Only you and your doctors can make the best course of treatment for YOU.    
    • If the company says it's gluten-free on it's website, what do you think  they will say that is different if you call?  The gluten-free drug list is just a partial list of gluten-free drugs.  There is no way he can check on every prescription and OTC medicine.  The fact that the manufacturer knows enough to put it on the website is great!
    • Can anyone tell me if Finasteride is gluten free? It is not on the Gluten Free Drug list but the website states that it is gluten free. I will call the manufacturer on Monday but for the time being does anyone know or take Finasteride? Thank you for your assistance.    
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