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munchkinette

How Many Of You Decided You Had Problems Despite Negative Tests?

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I've had a heck of a week. At this point I'm thinking screw the bloodtest. After my bloodtest a few months ago showed that I was still anemic after taking iron I decided to try the gluten-free diet as an experiment. (I've been anemic off and on for 3 years, but iron has helped in the past.) After only 4 days I felt phenomenal. My doctor (an internist) ordered a celiac panel and told me to eat gluten for a full week before taking the tests.

That week started on Sunday and I've felt like absolute crap. I had a bagel for breakfast 3 days in a row, and fell asleep at 1pm on two of those days. I had pizza last night (and some wine) and I crashed at about 10 pm. Today I haven't had any gluten (that I know of) and I still just spent the last two hours in bed, unable to think or move.

I won't be getting the test until Monday or Tuesday. I decided not even to bother trying to eat wheat until then. I can't handle it. How many of you decided to blow off the test and stop eating gluten? I'd like to have a real diagnosis at some point, because I can totally tell that I have some kind of wheat problem. The more I learn about this the more I think other recently deceased family members had some kind of wheat problem too.

Can anyone give me some advice about what other tests don't require me to eat wheat first? Are there tests that I can get soon that will still work even if I stop eating gluten? I'm still thinking of getting a wheat allergy test. I have no problem going right for the colonoscopy since colon cancer runs in the family, but I have no idea what insurance will cover without blood tests.

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prbly half the ppl on this form either have negative tests, or are self diagnosed. I look at it this way..

You eat wheat, you get sick. You aviod it, you get better.

What more do you realy need to know? :D

You prbly should get the blood test anyways, but dont worry about 1 or 2 days gluten free effecting it. So I would suggest you stop eating gluten, get the blood work and see what that says. Either way, you know eating gluten makes you sick, so in the end it does not matter. :)

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prbly half the ppl on this form either have negative tests, or are self diagnosed. I look at it this way..

You eat wheat, you get sick. You aviod it, you get better.

What more do you realy need to know? :D

Yeah, I know that makes sense, but I'm so new to all this (only got my recent anemia tests back 1 month ago and started a gluten-free diet 3 weeks ago) that I don't quite have the experience to pinpoint some of these problems. I didn't actually notice that I felt crappy until eating gluten AFTER my 2 weeks gluten-free, so I feel like I need some tests to help me figure things out. So many of my friends have been sick lately anyway, so I know I could have picked up something from them too.

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My 10 year old son had a complete blood/stool sample/allergy panel that came back negative for Celiac, Colitis, parasites, wheat allerdy etc. But since he had the big "D" for 8 MONTHS and lost 20 pounds we went ahead and had a biopsy done. This showed Celiac disease. He was in the 20% or so that showed a false negative in the blood tests (and he never quit eating gluten prior). We had an option about whether we wanted to do the invasive upper endioscope and colonoscopy tests or not. What a hard decision. I am so glad we did! We could have put him on a gluten free diet and yet always wondered...now we know for sure.

I would think it would be easier to stay gluten free for life if you knew positively that you have the disease. My son is a newly diagnosed Celiac and what we are learning is that this is a life altering event. I would compare it to Diabetics having to learn to eat everything differently - forever. I'd want to know for sure before I gave up so many of life's simple pleasures.

Good luck on your quest for answers!

Alysia

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Guest Kalynn

I am self diagnosed. I have thought about doing the Enterolab testing because my blood tests came back negative, but I'm not going to. I tell you, I have been gluten-free since October, and it's made a world of difference. Last Saturday night, there were croutons in my salad at the restaurant where we ate (not know to me until I was chewing them). I have paid for it this entire past week.

If eating gluten-free is helping, just do it, I say. Hope this helps.

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Yeah, I know that makes sense, but I'm so new to all this (only got my recent anemia tests back 1 month ago and started a gluten-free diet 3 weeks ago) that I don't quite have the experience to pinpoint some of these problems. I didn't actually notice that I felt crappy until eating gluten AFTER my 2 weeks gluten-free, so I feel like I need some tests to help me figure things out. So many of my friends have been sick lately anyway, so I know I could have picked up something from them too.

I am on the other end of the road your looking down. Two years ago I was Anemic with no good reason. I then went through test after test after test. I went on and off the gluten-free diet 3 times. Eat time i went gluten-free I got better, each time I stop I got worse. I never did get a postive test along the way, but even my doctor agress I must have celiac disease, she called ie "Clinicly Celiac" on my records.

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I went gluten free for a month before going to see my doc. Then I was planning to go back on gluten for a few weeks before having blood drawn, but the first day of that, after eating a bowl of cereal in the morning, I was in so much pain and so miserable I just went and had blood drawn that evening and went back gluten free right away. The blood test was negative, what a surprise. :rolleyes:

I feel miserable if I accidentally have some gluten. It not difficult at all for me to be gluten free. I also don't care what anyone wants to call it, gluten intolerance, celiac, whatever, if I eat it, I feel bad, if I don't, I feel fabulous. :D

Pauliina

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Guest cassidy

My mom was recently diagnosed with dh. During her research she found that my symptoms sounded like celiac. I had the blood test and went gluten-free that day. By the time I got the results I was feeling so much better, I didn't care that they were negative.

This diet has totally changed my life. I can finally eat without pain, I don't have to go to the bathroom 5 times a day (unless glutened), I don't have to pee all the time, I don't have hypoglycemia anymore, I don't have anxiety and I'm off my xanax (unless glutened), my heart doesn't pound all the time, and for the first time in my entire life my periods are regular. I never would have thought all those things were related, or would have gotten better on this diet, but they have.

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You eat wheat, you get sick. You aviod it, you get better./quote]

Vincent

couldn't agree more.

all 3 of my drs. (INTERNIST, GI, CHRIO WITH celiac disease CHILD) said---

Even tho your number are slightly elevated and we can't totally dx celiax with out further testing that the insureance co won't cover....YOU GO ON THE DIET...THE DIET DOESN'T LIE. AND IT HASN'T

LOVE MY COMPASSIONATE DRS WHO CARE & LISTEN.

JUDY IN PHILLY

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Well, I talked to my mom again last night. She had said that my gran had "wheat problems" at my age that she grew out of but didn't know much more. So I started grilling her for more details about my gran... she had stuff I'd never even heard of before, like scleroderma. (some autoimmune thing with the tissue) She also died of liver failure (not from alcohol), took thyroid supplements, had all sorts of arthritis, and type 2 diabetes. Her sister had multiple sclerosis. Her mom died of colon cancer. We're thinking of opening up her medical records since she died and can't tell us stuff herself.

The more I hear, the more I think my gran didn't "grow out of it" and actually had some kind of undiagnosed celiac disease or something. I've only been gluten-free again for 36 hours and I already feel great again. I convinced my mom to try the diet for a few weeks. I'm sick of feeling so crappy.

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My son went through sooo much testing, which was inconclusive. The diet has been nothing short of miraculous for him!!! Clinically Celiac is the term our doctor used too. He has all the symptoms, but is so much better now. I'm amazed that after less than 2 mos. we see this much difference. My daughter also had symptoms, so I went on a gluten-free diet since she was nursing and her turnaround was just as amazing. The bonus to all of this is that I had chronic joint pain and anemia and had never even thought that I was a candidate for celiac disease. After being on the diet for my daughter since 9/05 I feel better than ever. The pain is gone adn I have so much more energy. My hubby even says I'm not irritable anymore. :D

The diet is such a God-send. I thank Him for it and the improved health of our family every day!

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I had been gluten-free for two weeks before I got the blood tests. The only one that came back above the normal range was the anti-retliculin IgG - not a sure sign at all. But even my doctor agreed - if it makes you feel better do it. She's a doctor, so she also suggested a second data point, and I agreed, so I challenged with gluten a few days later, had a reaction, and had my data point telling me to stay gluten free.

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I was debating this for a while myself. I had been diagnosed with IBS when I was a child. After starting low carb eating in April 2004, my symptoms cleared up. Last summer, I heard of gluten intolerance and a few months later I started eating gluten again in preparation for testing. Last month I had the blood work and biopsy done. Both were negative for Celiac. Lactose and fructose breath tests have been negative. I still have other testing to do to rule things like Crohn's and Candida out.

What will I do if everything comes back negative? I don't know. I plan on going gluten-free to see if my symptoms clear up. If they do, I'll stick to gluten-free and assume I have a non-Celiac gluten intolerance.

Am I glad I'm doing the testing? Yes. The reason is that there are so many conditions/food intolerances that have very similar symptoms and I find it very difficult to pin down what specifically is causing my problems. I've been going through this since I was a child and I don't know what testing was done when I was young, so I'm doing it all again. :rolleyes: If something was missed, then perhaps while I was eating gluten-free I was also eliminating something else from my diet by chance that was actually causing the symptoms. I don't know. If after all the testing is done the results all come back negative and a gluten-free diet clears up my symptoms, then I'll stick to gluten-free. But for now I'm glad I'm going through the tests.

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I was gluten-free about a month when I went in to see my doc and she said, oh you are just allergic, you will always be allergic, end of story. I have an allergist and it isn't an allergy - I changed docs and was gluten-free 3 months before I saw this one, who ordered a biopsy and I refused to go back on gluten for the tests. The biopsy was negative, he didn't see any damage and only took 3 samples. He is the best in our town and all the Celiacs went to him. I don't care...I feel better.

The funny/scary thing is, once I discovered all my intolerances (see below), I talked with my mom and sister and my mom said, hey, her mom used to have the same problem. Why did nobody ever do anything!!! My mom refuses to figure out her many food problems and my sister had to get someone else to tell her the same thing I have been saying for two years!!! Eliminate the milk and see if that helps...eliminate more foods as needed! She had to hear it from someone else which just drives me crazy.

Anyway I also have an aunt who cannot have gluten, she just figured this out - all on the same side. My oldest son was tested and his blood test was negative. My youngest son will be tested next month but either way, I am pretty sure he has problems with gluten. However, his dad doesn't even believe he has asthma and is lactose intolerant when the docs say he has asthma and it is pretty obvious what happens when he drinks milk!!! He can actually HOVER!

If you really want the dx - that is up to you - for me - I didn't want it bad enough. But. I really need something in writing for my boys' dad.

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I've been gluten free for 5 months now. And even though I feel better, I know if I had a positive biopsy or blood test that proved I had celiac, I would be more comfortable with this diagnosis. And a lot less likely to cheat on the diet. I would get tested prior to going gluten free if I had it to do over again. Good luck Marcia

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I've had a heck of a week. At this point I'm thinking screw the bloodtest. After my bloodtest a few months ago showed that I was still anemic after taking iron I decided to try the gluten-free diet as an experiment. (I've been anemic off and on for 3 years, but iron has helped in the past.) After only 4 days I felt phenomenal. My doctor (an internist) ordered a celiac panel and told me to eat gluten for a full week before taking the tests.

That week started on Sunday and I've felt like absolute crap. I had a bagel for breakfast 3 days in a row, and fell asleep at 1pm on two of those days. I had pizza last night (and some wine) and I crashed at about 10 pm. Today I haven't had any gluten (that I know of) and I still just spent the last two hours in bed, unable to think or move.

I won't be getting the test until Monday or Tuesday. I decided not even to bother trying to eat wheat until then. I can't handle it. How many of you decided to blow off the test and stop eating gluten? I'd like to have a real diagnosis at some point, because I can totally tell that I have some kind of wheat problem. The more I learn about this the more I think other recently deceased family members had some kind of wheat problem too.

Can anyone give me some advice about what other tests don't require me to eat wheat first? Are there tests that I can get soon that will still work even if I stop eating gluten? I'm still thinking of getting a wheat allergy test. I have no problem going right for the colonoscopy since colon cancer runs in the family, but I have no idea what insurance will cover without blood tests.

I'd really recommend the Enterolab full panel test. It's $369, and I THINK some insurance co's might help with it. Still, even if you pay for it all yourself, you can learn a lot. It tests for the genes, so right off you can learn if you have one of the celiac genes, a gluten sensitivty one, or perhaps both. Then you'll at least know if you have a predisposition to celiac or gluten reactions. That test alone is $149, but it's included in the full panel offered by Enterolab. Here's info I copied from their site:

________

If you think you may be gluten sensitive or that you may have intestinal damage due to gluten (i.e., have celiac sprue), the best test providing the most accurate set of information is the Gluten Sensitivity Stool and Gene Panel Complete. The tests in this panel are complementary: the gluten sensitivity stool test looks for the antibodies produced by your body against gluten, the tissue transglutaminase test determines if gluten has caused an autoimmune reaction in your body that can attack and damage the intestine and other tissues of the body, the malabsorption test assesses whether your intestine is malabsorbing dietary nutrients because of damage, even slightly so, by gluten (or perhaps other factors), and the gene test assesses your risk based on your genetic predisposition, and for a limited time, we are offering a milk sensitivity test free. This panels save you $176 over ordering the tests individually. After 5 years of assessing genetic risk factors it is becoming clear to us that possessing the gene, per se, may be enough to predict that you will experience better health and feel better by eliminating gluten from your diet.

If you simply cannot afford to include the gene test (because it is a highly technical assay it is an expensive test for us to run), the next best test would be the Gluten Sensitivity Stool Panel Complete. And if you are deciding between this stool panel and the gene test alone, the stool panel better determines whether you are actively reacting to gluten while the gene assesses the probability that you are reacting or will react to gluten.

______

These tests are done on a stool sample (no blood test required) and you don't have to be eating gluten currently, either. I did my test after about 6 weeks gluten free.

Go to www.Enterolab.com and read all the info links on the site.

Ultimately, if you feel vastly better on the gluten free diet, and horrible when you eat gluten, and you are obviously able to identify gluten eating as the culprit behind your reactions, it's obvious you will do better not eating gluten.

For myself, I wanted some verification, but the blood tests are expensive, often inconclusive, the biopsy is physically invasive and expensive, and most doctors are fairly or completely ignorant about all aspects of celiac disease.

I decided the Enterolab tests made sense for me and I got really valuable information from them (including the fact that I was also casein sensitive--dairy was also causing the same symptons as the gluten in my case). I don't need a clueless doctor to do hundreds if not thousands of $$ worth of tests to confirm anything to me. The diet made a difference, that's the solution anyway, no matter how you arrive at that conclusion.

If you get the gene test at the very least, then you have a better idea of what the chance is your symptoms are connected to celiac/gluten. From the reading I've done on gluten, it sure looks like NO ONE should eat gluten, whether or not they have the gluten/celiac genes.

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I was thinking about this. Can I get this done through my doctor? Or is it only available to do on your own?

I don't think your average doctor knows much about enterolab and their great work. They only know what they learned in medical school and that knowledge is only as good as the person teaching the subject. What CMCM said is correct. She really nailed the subject. Get on www.enterolab.com and read some of the info. What is great about Dr. Fine/enterolab is that you have the ability to test yourself in the privacy of your own home, the price is reasonable compared to typical laboratory fees, they send you everything you need and a return envelope/container. It couldn't be simpler. They are quick, and they send an explanation of your results. If you have any questions, this message board is great about helping to interpret and explain your results, although I believe enterolab will answer emails if you need it. You really should pursue their tests because everyone I personally know that has used them has been pleased. Best of luck and let us know.

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Guest barbara3675

Really would like to back up what CMCM and Kelliac have told you. Couldn't have said it better myself. I had the negative bloodwork and did Enterolab and it was the best $$$$ I could have spent. I have the gene and am gluten intolerant. I WAS casein intolerant but that worked itself out as it often does after about six months or so when healing occurs. I have a granddaughter who is 7 that has celiac disease and her mom (my DDIL) is the one who suggested that I get tested for which I will be eternally grateful. Now my mother, who will be 88 soon, and has had so much gastric problems is also eating gluten-free. Barbara

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I guess what I'm wondering is how reputable they are if the doctor doesn't do it. Will my doctor take these results seriously? I want it to be included in my records so that my doctor will consider it in later recommendations and referrals.

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They are a certified laboratory. Dr. Fine is an M.D. It's really more of a lack of knowledge issue with doctors when it comes to recommending enterolab. They just don't know much about the subject due to their medical school training. The information regarding gluten intolerance grows by leaps and bounds everyday. It's hard to keep up. However, as far as having results in your hand and a doctor accepting them, they should. Genes are genes and they cannot be changed. Whether or not your doctor knows and understands genetic markers for gluten intolerance is another question. Again, info is available on the internet (from some reputable sites such as the NIH that Doctors will believe) that shows what diseases are linked to what genes. So, they should believe the info after they research it. Go with documentation from reputable sites and if your doctor has a problem with it, get a new one.

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Amy,

You sound like my twin. I've been dealing with various things for years. My mom saw a show on Discovery channel and called me excited b/c it described us to a tee. So I called my friend who has Celiacs and actually asked her about symptoms and etc. Never before that b/c it just never came up and I didn't want to pry I guess....anyway, so she tells me about it and I look on here and I have or have had almost every symptom described.

So I start watching my diet, just to see when I would have the GI probs and etc. I learned that I normally do not eat a lot of gluten. I actually went for 3 days without gluten just on my "normal" diet. THen I went to Sam's and bought groceries and a little yummy for me, chocolate covered pretzels. I ate a handful and before I was home, I was cramping, bloated, gassy, sat on the toilet I don't know how many times that night and felt like crap the next day. I kep watching and every time I ate gluten, I got the sypmtoms. So I called the dr., made and appt, and ate more gluten in the week leading up to that appt. than I had in a year. I was MISERABLE.....could barely take care of my kids, yelling and no patience, sick.....etc...etc.....

My tests came back normal, high side of normal, but in normal range. I went off gluten the day of the appt., and haven't had any biopsy or anything b/c it doesn't matter. I am not going to eat gluten. I would love to have a firm diagnosis, mostly so that I can tell people it is real and the doctor said so. Mostly b/c of my in-laws, they are not going to understand this and are going to think I am a hypochondriac or on a health kick or something when they come back from wintering in Florida.

Anyway, I have been gluten-free since November with some minor setbacks, one on purpose b/c my family was not understanding so I ate a cookie b/c I was mad at them (and then spent 2 days in the bathroom and feeling blechy) My DH said, well you sure showed us, huh?? (he was joking) He's actually been really supportive, the boys (4 of them!) are starting to realize that this is not just something mom is doing to make thier lives difficult.

Hang in there Amy, I am actually thrilled that it has been this simple to make mysef feel better. Baking is something I am still working on. I ahve a lot of mixes that I lean on now, instead of baking from scratch, but oh well, that is the least of my worries. I can only think of one thing that I have missed so far and can't or haven't made myself and that is toasted ravioli oh, 2 things! and crab rangoon, but I know I can make those, it is just going to take me some time.

good luck and let me know if there is anything I can help you with.

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I did the blood test, it was negative. I did the stool test, it was positive for gluten sensitivity and the Celiac gene. I faxed a copy of the results to my doctor to put in my files. He said if getting off gluten makes me feel better, then we have our answer. The blood test doesn't show if one is gluten sensitve. It looks for acute Celiac disease, therefore not making it a reliable test. Same with a biopsy - if the villi are flat then it is Celiac, but what if you aren't full blown acute Celiac? So my doctor is cool with it. If yours isn't fire him/her and find one who does.

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Kelliac,

I notice you have DQ1 and also had a poitive biopsy. I dont ever see this although I know its possible to have Celiac w/out the main genes. I have DQ1 also but I didnt have my biopsy until I was already gluten-free for 6 months so couldnt determine anything from it. I figured it wasnt really a possibility anyways since I dont have DQ2 or DQ8. My doctors say the genes dont rule it out. I was just curious if you've learned anything about this? :)

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Can anyone give me some advice about what other tests don't require me to eat wheat first? Are there tests that I can get soon that will still work even if I stop eating gluten? I'm still thinking of getting a wheat allergy test. I have no problem going right for the colonoscopy since colon cancer runs in the family, but I have no idea what insurance will cover without blood tests.

I know that there is a test that they do...um....rectally. The doc will put a gluten containing substance on the lower colol/large intestine/rectal area and wait a little while (20-30 min) and then check for irritation. I have not had this done, but I have read about it. And now, I am having a brain f@rt and can't remember where I heard about it.......maybe someone else will know....

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