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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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dbuhl79

Blood Test Results Within Normal Ranges

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So I've gotten the infamous blood test results back. "All within normal range, everyone, nothing even inflamed" You don't have Celiac Disease. That's great right?

Explain to me why I am now on the verge of tears and completely breaking down?!?!

Nobody wants this diagnosis. I will take this and being told I can never have gluten again over being in pain every single day. Running to the bathroom so many times my co-workers and family think I am insane. Losing weight unhealthily. Feeling exhasuted, nasueated and unable to consume ANYTHING. I even missed half of work yesterday.

The kicker here is the GI doctor didnt even schedule a follow-up appointment to search for ANY thing else that could be wrong. Not even to stick me with the official IBS label. :angry:

So what do I do now? Go gluten-free? Send in samples to EnteroLab? So frustrated. :( I just don't want to see another doctor.

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If your doctor's not going to test you for anything else you have nothing to lose.

richard

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I can relate to your story, mine is the same, exactly. I was told 5 weeks ago that I'm fine with a touch of IBS. BS for sure!

I have been Gluten free for 5 weeks and I stopped the bathroom dashes completely, I feel so much better. Just yesterday I sent in the EnteroLab stuff so I'll see what comes back there. But in my book I just feel so much better now that I'm gluten-free. Its been a huge change.

Its hard to give all gluten products up and it would be awful to do if you didn't have to but if you go gluten-free and feel a lot better, then I think that tells you something really important.

Keep in mind doctors don't know everything, they simply help us with our health decisions.

Susan

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Susan & Richard,

Thanks. You're right, nothing to lose. I Had just gotten off the phone with the doctors office when I posted that message, so I was exasperated to say the least. I've had other health issues that I've been tossed around with at the same hospital and I think this is the last straw! :)

I've d etermined to go Gluten Free. I did it for a week and felt better, even glutend myself once with some rice cakes that weren't exactly gluten-free. Felt immediate symptoms. Its got to mean something! :)

Susan its nice to hear you've had such positive results. Let me know how Entero Lab turns out. I can't get there website to load today!

All in all, I know I can go gluten free w/o a pat on my back from the doctor to say "Go ahead'. But theres some part of me that would of really liked that affirmation that I'm not nuts! :) You guys are that confirmation for me!

Thanks so much.. This board is wonderful.

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I am right there with the rest of you. Got my blood tests back on Friday and all my doctor's assistant said is that it was "negative for a wheat allergy". Considering that isn't even what I was tested for, I thought it was amusing, especially since I can't even get my GI to return my calls.

Bottom line is I did the gluten free diet as a last resort because I was so deperate to resolve my "IBS" that I have dealt with most of my life. After only three weeks, I feel about a 70% improvement in my IBS symptons, and marked improvement with my headaches, anxiety, and PMS symptoms.

It would be nice to be validated, so I too am going to try the Entero testing as well as the York. It may cost a little money, but if I am feeling better, I don't care!!!

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This is definitely the problem with the US testing/diagnosis of celiac disease. Here, either you have celiac disease or you are FINE. Isn't this like telling a smoker, "Hey, you don't have lung cancer, why give up smoking?" Just because gluten causes your body to react in extremely negative ways, just because you feel awful 90-100% of the time, is that a good reason to give it up? According to so many doctors, no. Why? Because it is "too hard." <_< Or, other variations on that theme.

According to one of my kids' pediatricians, the only way to definitively determine if you have a problem with gluten is to go off it. If you have a positive reaction to a gluten-free diet, try something with gluten in it. If you react badly to this, you KNOW you're gluten intolerant or sensitive! Her stance is, if something you're eating adversely effects you, it is obviously doing something to you that is not good and why eat something that makes you feel miserable? (Now, the other pediatrician at the office gave me the "too difficult" lecture. HAH! He didn't even want to run the blood tests. :angry:) I'm with the good pediatrician on this issue. :P

Also remember that celiac disease, DH and gluten sensitivity/intolerance is an area that is being studied as we sit (run to the bathroom, moan in pain, scratch... :blink:) Not everything is known about it yet. How would you feel if, because of the difficulty of following a gluten-free diet you decide not to (as per your gi's advice even though your body tells you this stuff is not good for you) and, 20 or so years from now are incapacitated by a condition that has become linked to gluten sensitivity?

Hmm, I think I have an opinion on this. :lol:

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Guest imsohungry

I just want to give you a big ol' hug! :)

Let me tell you something. I have been through heck forward and backward in my short life. Everyday scientists are coming out with "new genes" found linked to various disorders. I was told that I had IBS until some genious dr. decided to test ANA, white blood cell count, etc....and found out I was all out-of-whack. When we started searching for answers 15 years ago, doctors told me that I was a hypochondriac. :(:angry: You know what??? It shows their ignorance. Years later, with the correct blood work and doctors, it was discovered that I have MULTIPLE auto-immune disorders, and the "spells" that I had as a child were actually SEIZURES! Somebody finally got wise enough to do a MRI and PET scan and it turns out that I have a scar on three lobes of my brain and irregular blood metabolism too! :blink: For how many years was I a juvinile hypochondriac?....until I found a couple of good doctors.

My point is, believe in yourself! Only you know how YOU feel. And if you are feeling better gluten-free, good for you! B) Find yourself a doctor who is not content "settling" for what other doctors have already proved to be true...we would never have any new advances in medicine if some doctors weren't out there looking for alternate explanations and identifiers for people's physical problems.

I hope you stay feeling better and better! Much hugs and blessings. -Julie ;)

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hi

i posted something in one of your other threads too. i am sorry you are having to go through this. my recomendation is that you get another doctor, and keep looking until you find a good one.

i had a terrible experience with a lousy doctor once too. I was crying in her office because i had been having stomach problems for so long and didnt know why, so guess what? she disagnosed me with depression :angry: HA i went running out of her office and never went back.

i will also tell you, that giving up gluten can not hurt you, but it may be another food intolerence or some other problem, so i really feel you should look into other food intlorences and find another doctor so you can get to the root of the problem. giving up gluten may help becaus when your stomach is messed up its harder to digest wheat, dairy etc, but there may be another underlying problem too.

i did have a postive test for gluten, but i am still having problems sometimes, so i am still searching for other things that could be causing problems. ( corn is one thing that i recently discovered causes me problems for me.)

anyway i will quit rambling now, but i wish you the best of luck.

take care

lillie

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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