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Okay, I am new to this whole thing and kind of fighting it. I am a huge wheat fan, and giving it up is going to be quite a challenge. About a month ago, I finally let my GP do the blood tests for Celiac disease. I had been to the ER for GI problems, and I finally thought it was time to go. I have most of all the symptons of Celiac except the weight loss. I have been diagnosed as IBS for almost 10 years and have been dealing with the discomfort and inconveinces as if were IBS. My doctor has always thought it was a food allergy, and last May suggested we do this Celiac test. Before she did the test, she explained that there were four antibodies that were tested for and if ANY of them came back positive, that I had Celiac and would need to go gluten-free. A week after taking my blood, I got a brief letter from my doctor saying that two of the four antibodies were positive and that I "probably had Celiac Disease." She said to read everything I can and go on the internet to learn about it and go gluten-free. She didn't say to go to a specialist or a dietician or anyone else. She didn't say to do any other tests either.

The next week after recieving this news, I did go 100% gluten free, and was misserable as I didn't know what I could eat. It was so difficult that I quite and haven't done it again. I did feel amazingly better though on the gluten-free diet. Today, I am sitting here as my stomach is rumbbling and "talking" to me feeling very uncomfortable.

So, my question is....is my doctor right in that I do have it based soley on these tests and no additional tests are required? Also, shouldn't I be seeing another doctor or someone if I have this terrible disease? In order for me to give up everything, I think I need some more information. I need to try the gluten-free diet again, but its Christmas, and I don't want to miss out on all the holiday entertaining.

Please help, I'm not sure what to do! :huh:

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


First, allow me to thank all of you that respond to our questions. I think I can speak for all "Newbies" when I say, we truly appreciate it. You provide a comforting and knowledgable "voice" to us that are still un-informed.

My Father (now 67) was dignosed with celiac disease two years ago. I am 33, but have not shown any signs, nor been tested for celiac disease. I now have a two year old son and would like to have his blood tested b/c he has displayed a few minor symptoms in his short life, but his Ped. doesn't think any of them are related to celiac disease. I would like to know whether he has it or not for obvious reasons, not too mention my peace of mind.

Should I put my son through the pain of drawing blood and have the tests done or not? I don't want to traumatize him, but I do want to know.

Thank you for your recommendations,

Randy

(a concerned Father)

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First, you need to find out what the numbers were for all of your tests. You need to know which ones were positive. That makes a difference. If the Iga and ttg are positive, and you've gotten better by going gluten-free, odds are VERY, VERY strong that you indeed have celiac disease. The blood tests soemtimes give a false negative, but when they come out positive they are pretty much always right.

Most doctors would now want to send you to a GI for an intestinal biopsy, which is considered the gold standard for diagnosing celiac. If you haven't already, you should also have blood tests to see if you have any nutritional deficiencies (iron, B12, etc). You probably should be on vitamins at the least. And you probably should have a bone denisty test (assuming you do have celiac disease). In most cases, you can learn more on the Internet than you will from a nutritionist.

Eating at home doesn't have to be hard, but going out is difficult. At home you start by just cooking fresh vegetables, fruit and meat. Eggs are safe. Then you start learning what processed foods you can and can't have either by calling companies or learning which ones clearly list gluten. Ask lots of questions on the Internet.

If you do have celiac disease (and I'll bet you do), you must go gluten-free or eventually you'll be pretty much incapacitated. Mine wasn't diagnosed until I was almost dead (I'm fine now). Believe me, you don't want to go there.

richard

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Some doctors will dx on blood tests alone and not rely on a biopsy. I personally think that's a better way to go since blood tests generally don't give false positives, particularly the ones specific to celiac. If you feel better on a gluten-free diet, then you may not need further testing. (Some people really do want the biopsy confirmation, some don't feel they need it. I didn't get one.)

I don't think, if it's relatively uncomplicated, you necessarily need another doctor. I also don't think this is a terrible disease. ;-) There is a LOT out there you can still eat - including bread/baked products, once you find the ones you like or make your own. (I make a darn tasty pumpkin bread!) And while there can be complications, generally, if you stick to a gluten-free diet, you're probably going to be just fine.

It can be a hard diet to adapt to at first, but you can get there.

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Amy- Richard is right, you need to ask for a copy of the test results so you can see what they ran and what the numbers were. Whether you have a 'scope or not is really up to you and how "definite" you need to feel in order to go gluten-free. If you respond to the diet favorably and have positive bloodwork, some people just don't want to undergo the biopsy (which can be hit-or-miss). If you need incentive, just think--you are not absorbing nutrients with increasingly damaged villi. It only gets worse, not better, without a gluten-free diet. You'll be at risk for vitamin deficiencies,weight loss (not the good kind), osteoporosis, and colon cancer...... You don't necessarily need a specialist, but your doctor, IMHO, doesn't sound too interested in your celiac education!

Randy- You need to be tested, this is a genetic disease. Very small children sometimes have ambiguous blood test results so it might not give you much information. If you trust your pediatrician, you might want to wait. And if you don't, and decide to get your toddlers blood drawn: call the lab and ask for a technician experienced with children, it makes all the difference. Bring something to distract him (I use baseball cards). Put on your happy face. Ask for them to lie him down, it's hard for kids to keep their elbows out...The draw is brief and isn't going to traumatize him for life.(My son mostly complains about the rubber band on the arm!) Elidel cream can numb it, but you have to put it on and wrap it in plastic for about 30 minutes prior to the draw. Tell them to use a butterfly (it's a teeeny kind of needle, they should know this anyway).

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I also don't think this is a terrible disease. ;-)

Then again tarnalberry, you've posted that you think you don't HAVE the disease, but rather, are gluten-intolerant.

AMYGOS5970 will certainly prove you wrong if she (or he, i see Amy) does have celiac disease and does not start gluten-free until too late.

How dare you say such a thing here tarnalberry.

Of the myriad of my symptoms, there were 5 or 6 which ALONE would be called debilitating. You've never had to deal w/ this disease's full-blown effects and it's insulting to those of us who have to see you comment in such a cavalier fashion.

I'll even add a "Shame on you". :blink:

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Okay, I just called my doctor to get the numbers. They are low, I think???

IGA was 25

IGG was 15

TGA (?) was 5

RIGA (?) was negative and then it had a ratio of 1:40.

Any of this make sense? I can't find info on the web for what the numbers are suppose to be.

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Randy, as Ryebaby said, I also believe you should get tested. Another way to test your little one (and yourself too,) might be to go the Enterolabs route. This is a stool test, no blood needed.

Tom, as far as your reaction to Tarnelberry, yes, you have had it bad. I even watched as my father died from this, so I know exactly how bad it can get. But, this is a wholey treatable condition. Now that you and I and the rest know what's been making us sick, we can do something relatively simple to take care of it. The horrible part of this is that it does go undiagnosed for so many people. My father would still be alive today if he'd been diagnosed before he died. At least I can be pretty certain that I and my three kids will not have to go through what he did and, all things considered, my children shouldn't have to go through what I'd been going through for the last 15 years either. I am actually quite relieved to have discovered celiac disease. (It's amazing that with all the annoying, painful tests that had been done to me not once did they examine my small intestine. At least I don't have to go through anymore!)

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:unsure: i agree with everyone--yes tom--it is very dibilating before we know what is wrong and for the lucky celiacs who just go gluten-free and have no other problems tarnalberry and lovegrov, then it isnt a terrible disease---some of us who had terrible problems before going gluten-free are still very touchy :unsure: --- :angry: i was so sick of being told it was in my head or was IBS or stress or spastic colin--i was so sick for many years and because of never being diagnosed i have irreversible joint problems--both knees are shot and i have neuropathy :( --so sometimes it does seem like a terrible disease--BUT ;) is it something we all have and we are here to help each other and guide the newbies---- :D welcome amygos5970 and randy--feel free to ask anything you need too and as far as the question goes--i was never doctor diagnosed, my sister was diagnosed with full blown celiacs and because i had no insurance for testing purposes, we both decided it was the best thing for me to go gluten-free and i will never go back----deb

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Then again tarnalberry, you've posted that you think you don't HAVE the disease, but rather, are gluten-intolerant.

AMYGOS5970 will certainly prove you wrong if she (or he, i see Amy) does have celiac disease and does not start gluten-free until too late.

How dare you say such a thing here tarnalberry.

Of the myriad of my symptoms, there were 5 or 6 which ALONE would be called debilitating. You've never had to deal w/ this disease's full-blown effects and it's insulting to those of us who have to see you comment in such a cavalier fashion.

I'll even add a "Shame on you". :blink:

Hmm... where to start on this tirade...

I didn't say I don't have the disease - I'm purposefully vague on that part. I did not have and don't ever intend on having a biopsy. Without one, you can't actually say whether or not you have the disease (as the description of the diagnosis stands) because celiac is defined as damage to the intestines caused by gluten ingestion. Quite frankly I do think that if I kept eating gluten, I would have celiac disease. But I'm not going to do that.

You want a terrible disease - try one like incurable cancer that'll take your life and make you miserable while it does and there's jack you can do about it. You want a terrible disease - try end stage COPD when you can't breath and there's jack you can do about it. You want a terrible disease - Actually, you know what - scratch that; a disease is as terrible as your attitude allows it to be.

You don't know the full extent of my symptoms, and assuming that you do, and that they are trivial in comparison to your tragedy is insulting to me! I've got three other life-altering conditions - none that I would also not describe as a terrible disease, no matter how much pain, physical and emotional discomfort, and mental anguish gets to me and my loved ones, BECAUSE there is something I can do about them. Just like this "disease".

I never said the symptoms weren't terrible. I've never said it wasn't serious. I've never said that it should be treated cavalierly. What I said was that - in and of itself - celiac disease is not a terrible disease because it need not be. It can do terrible things to your body IF untreated. It can do terrible things to your life IF untreated. It can do terrible things, yes that's true. But it is manageable, it does not require expensive medications with life-threatening complications of their own, and so forth. Don't confuse terrible consequences for not treating a disease with the disease itself. If you're going to do that, then I would say bronchitis is a terrible disease, as is the flu, as is a skin infection from a paper cut you get opening an envelope.

The attitude that this is some horrible disease and a terrible thing to be diagnosed with will only prevent MORE of our family members from getting tested because they don't want the chance of being diagnosed with a "terrible disease". I would have to say "shame on you" for doing a diservice to all of those out there who are undiagnosed and afraid to get tested by scaring them further.

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Ahh so now untreated celiac is comparable to an untreated paper cut.

I certainly never claimed celiac is as bad as any terminal disease. I never attempted to belittle your or anyone else's symptoms, from celiac or any other affliction. In other recent posts, you (tarnalberry) called yourself gluten-intolerant and i take that to mean you hadn't had the non-intestinal symptoms that celiacs can develop before going gluten-free.

Sorry if that's considered jumping to a conclusion but i cannot imagine how ne1 who'd had full-blown celiac symptoms could ever call themselves GI.

So remember that this thread was started by someone who isn't sure whether to be gluten-free.

I think we can all agree that if AMYGOS5970 doesn't go gluten-free, sooner or later, terrible symptoms will most likely appear and will get worse UNTIL AMYGOS5970 is gluten-free.

(And ne1 undiagnosed & scared by my prev post should read it again. The middle sentence says "terrible if a celiac is not gluten-free", as long as the reader understands the reference of the phrase "will certainly prove you wrong".)

I suppose part of my reaction is that saying " I also don't think this is a terrible disease. ;-)" WITH a winky emoticon for chuckles doesn't do anything towards convincing AMYGOS5970 that it IS serious enough to forego glutenous "holiday entertaining".

AMYGOS5970's last sentence of original post was:

Please help, I'm not sure what to do! huh.gif

Helping = convincing people w/ a positive blood test to go gluten-free.

Sorry if your sentence that was meant to calm ended up setting me off too much. It's only potentially terrible when gluten is still being ingested.

HEY AMYGOS5970 !!! Are you gluten-free yet ?????

:unsure:

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you (tarnalberry) called yourself gluten-intolerant and i take that to mean you hadn't had the non-intestinal symptoms that celiacs can develop before going gluten-free.

Sorry if that's considered jumping to a conclusion but i cannot imagine how ne1 who'd had full-blown celiac symptoms could ever call themselves GI.

My primary symptoms were non-intestinal - brain fog, fatigue (yes, to the point that it interfered with my life on a daily basis), irritability, and possibly vulvar vestibulitis - a condition not yet positively correlated with celiac, but it's what initially caused me to look into it upon someone else's suggestion. My intestinal symptoms of bloating and bourbourigmi and constipation were painful and annoying, and did definitely impact my life, but they were less of an impact on my life than the extra-intestinal symptoms.

I don't call myself celiac because I didn't get a biopsy and my blood tests were inconclusive. While I will never fault someone for saying they are celiac on blood tests alone, I choose to stick with wording that is less likely to cause a reaction in my doctors when talking to them. As celiac is classically defined by flattened villi, and I have not had my villi ever looked at, I opt not to use that particular word. Perhaps if my tTg were higher I would use that title, but I don't think my particular case had been triggered for long enough to do sufficient damage to get enough antibodies into my blood for a high enough value. (Please, everyone, note that I am not disagreeing with using the term celiac to describe yourself when you haven't had a biopsy, simply saying that _I_ choose not to use the formal term for my own reasons.)

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AMY, if you feel the need to have another dr test you, then you should go for it. You said you felt better on the diet, that's great! It does take a long time to figure out how it all works but in the end it is worth it!

From my personal experience, I was diagnosed only through blood (and that's all I needed, the diet worked wonders). . .my brother was through blood and biopsy (he went to another dr for 2nd opinion and had the biopsy). . .my mother was diagnosed as well, and we all are so much better gluten-free. Out of the 3 of us my Mom was the only one with the low weight.

Randy, you're family should be tested just in case. Have them talk to a doctor and decided if they even want to go through it. It's better to know now then find out later and have done damage. I know in my family my mother has it and my brother and I do, too. Her sister also has symptoms but doesn't want to get tested. A lot of other people are the only ones in their family to have Celiacs. . .so your family may or may not have it.

Good luck to both of you on finding answers and sticking with the diet!

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:( we alll need to remember that you can be gluten intolerant and not be celiac yet--if you stay on the path of destruction that gluten causes, then eventually you will have celiac disease--we dont all have celiacs, some caught it before it got to that level and they are the lucky ones like tarnalberry--i wish i would not have been so sick before i found out--it would have been so much better to not have been sick for over 20 years ;) we are all in this together--be us celiac or gluten intolerant--we need to support each other, not argue :( deb

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Twister - to answer your question, I participate on this board because I am gluten intolerant. If you read my full (long-winded) answer, you'll see that the reason I don't call myself celiac is because I haven't had a 'scope, and *technically* celiac is diagnosed through intestinal damage. Since I have no proof of intestinal damage, I have no proof of celiac. Yet I know my body reacts (gastro-intestinally as well as extra-intestinally) when I eat gluten.

Just like those with the firmest diagnosis in the world, I consider that I have to eat completely gluten-free for the rest of my life. No cheating, no tastes - none of that. I've gotten a lot of useful information from this website, and a lot of support (directly and indirectly) for dealing with a gluten-free diet, and I'd like to think that I've been able to help some people starting on the diet. If the community as a whole doesn't think I belong here (for whatever reason, though I would hope that - with all the trouble we have with doctors and families believing that you don't have to have classic symptoms and test results to need to avoid gluten - that it wouldn't be a problem that other people who do have to deal with gluten would think I'm not being forthright), then I'll go. (Well, honestly, I'd still read, but I wouldn't post.)

Twister - I hope that answers your question, and if not, please let me know.

PS - Deb, thank you for the explanation and ... answering that post the way you did. It made me feel better. :-)

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Tarnalberry,

I agree with you. I consider myself Gluten Intolerant because I

had a biopsy but no damage (yet). I don't have the gene either

but I cannot tolerate Gluten. I have intestinal and non-intestinal

symptoms. I fervently believe they will someday find another

gene for all of us who are not truly celiac. I participate in this

board because It has helped me when I was so sick that I

couldn't get out of bed for three months. I found answers here

that my GI doc couldn't give me. I think we need to help each other

no matter what disease we have, Gluten is the enemy.

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Tarnalberry..forgive me for seeming a little offensive in my post, but I too was caught off guard by hearing someone say that this is "not a terible disease". Don't you think that such a statement on this board could be considered insensitive?? Celiac or Gluten intolerant..it does not matter. My experience with this diease has been horrible. Both personally and with members of my family. My oldest sister spent a week in a mental hospital because her doctor thought she was severly depressed because she kept coming into this office complaining of severe muscle pain. When she finally broke down in his office begging for help he admitted her to a mental ward as he said he "Could find nothing wrong with her".

I also remember my mother sitting up in the middle of the night rubbing her legs until they were red from muscle pain associated with this disease. SO yes......it is a terrible disease. I do however respect that it may not be terrible in your experience, but please be sensitive to those of us for whom it is.

Twister2

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Amy with newly diagnosed celiac disease -

From everything that I have read - the antibody tests are fairly specific and sensitive to the disease. However, I believe that you will only truly know if you have celiac disease if you go on a gluten-free diet and your symptoms remit. This diet is not easy at first, as wheat is added to everything - soups, yogurt, gravy, meat in restaurants, etc; however, sticking to the diet and identifying the "culprit" foods will become easy with practice. I have been on a gluten-free diet for 9 months now and it has changed my life.

I think the larger issue is how strongly do you want to feel better? Sticking to a celiac diet takes a bit of discipline - you have to want your health back. I think that most celiacs who have progressed to a very bad spot will easily give up gluten to have control of their life.

Good luck to you, I know it's now easy! But think of the diagnosis in a positive way - b/c now you have the tools to regain your health, and that tool is a gluten-free diet.

SARA

Philadelphia

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Twister - I now understand better why you asked that question, but it seems that my "it's not a terrible disease" statement has gone misunderstood by at least some readers. I never said that the complications are not terrible. I never said that the symptoms if left untreated are not terrible. I said the disease in and of itself is not terrible - and that means that when taken as a whole (so the average symptoms, treatment, side effects of the treatment, efficacy of treatment, prognosis under treatment, and impact on one's life) is not "terrible". Some people have worse of a situation than others, but we can't judge the disease as a whole on the basis of the outliers on the distribution. We can recognize that there are aspects of the disease that can be terrible, but that's not the same as the disease as a whole being accurately labeled as terrible.

If you take a look at the studies on celiac disease on average, and the followup on patients, what comes out is not "terrible". I'm not saying it's all roses, and I'm not saying that it's no worse than not having it, and I really am not saying that there aren't some terrible aspects to it for some undefined (in my argument) number of people. But to say that a disease is terrible means - to me, anyway - that no matter whether you know about having the disease or not, no matter what you do to cope with it, your life is a living hell turned upside down that makes even the strongest people question just why they're going through it. Yes, we have read from those on the board who felt that way before diagnosis (though, remember, that is not a random, representative sample), but time spent before the diagnosis does not fully describe the disease.

We also shouldn't call a disease terrible because of the medical community's ignorance in correctly and promptly diagnosing it. They can't get off that easy!

I'm sorry my statement offended you in anyway; that was not my intent. My intent was to take away the "scaryness" and "horror" that someone might affiliate with a "terrible disease", by noting that - on the whole, in its entirety, and in most cases - it need be neither scary or horrifying.

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