Want To Cry-So Frustrated!

[lvpriest]

Hi everyone,

So I saw the gastroenterologist for the results of my blood tests, barium followthrough and ultrasound this morning. A 'very satisfactory set of results' in his words. Which meant negative blood tests for celiacs, and the ultrasound and xray were clear.

It took a lot of strength not to cry in his office- I was so hoping for a diagnosis, or a reason why I feel like I do. But nothing. He said he thinks it's a brain-stomach link, and a problem with my nervous system and my gut. He's put me on medication for 5 weeks, motilium and colpermin, and then I have to go back and see him.

Prior to the tests, which were done about a month ago, I didn't cut out gluten. Granted, I barely ate anything with gluten in it, but I guess maybe it's not a gluten intolerance thing? Maybe it is all in my head-I feel such a fraud. I know something's wrong but medically they can't find anythin wrong so maybe I am making it up.

I cut out gluten for the last week or so and definitely feel so much better! My poo has become brown again (albeit still floating and poorly formed) and I have more energy. But now I've been told my blood work is negative for celiacs or malabsorption, I feel like a fraud doing it, cutting gluten out I mean, as there is no rhyme or reason why I should. I guess o probably shouldn't cut it out now he's put me on these meds too?

Any advice or if you've been in a similar situation, please help! I feel such a fraud and really alone.

[ravenwoodglass]

"I cut out gluten for the last week or so and definitely feel so much better! My poo has become brown again (albeit still floating and poorly formed) and I have more energy. But now I've been told my blood work is negative for celiacs or malabsorption, I feel like a fraud doing it, cutting gluten out I mean, as there is no rhyme or reason why I should. I guess o probably shouldn't cut it out now he's put me on these meds too?"

I'm so sorry your doctor is so clueless. Please continue on the diet. Many of us do have issues with depression and anxiety due to celiac's impact on the brain. It is up to you but you may want to hold off on the meds until you can see if the diet helps. False negatives on both blood and biopsy are not uncommon and can make it really hard for some of us to get diagnosed. Since you were feeling so much better on the diet stick with it, your body knows the answer.

[Bettie]

You are not alone, there are lots of us that feel the same way. Try eating normal while you are on your meds and see if they help. If not then you can always go back to your doctor. Dont forget that it is hard to get a diagnosis with celiac and if you have come out negative it still does not mean that you dont have it. If cutting out Gluten is making you feel better then that is all you need to know. Tell your doctor this. Keep a diary of how you feel when eating gluten and then how you feel off gluten. I have done this and I have noticed the difference much more. You could have an intolarence to other foods too.

Good luck and I hope you start feeling better soon

[Kay DH]

Stay off gluten. It takes time for your mind, body, and emotions to adjust to the changes in life from going gluten-free. I am self-diagnosed gluten intolerant because of all of my symptoms and because even CC makes me ill. My primary care doctor just said don't eat gluten, my GI didn't say anything. I have been on a full gluten-free diet since November, even though all of my tests have been normal. I have the HLA-DQ8 genetic marker, but the GI said that only gives me a 10% chance of having Celiac. I had the Celiac Panel blood test two years ago because of rashes I've had for a few decades; it was normal, which is not uncommon with (undiagnosed) DH. My rashes went away after 6 months gluten-free. I had the blood tests again in January and it was a probable false negative because I was on a gluten-free diet (you need to be on a lot of gluten before the tests). My GI symptoms started last September after getting the flu. I had the full endoscopy-colonoscopy in May, and it was normal except for minor asymptomatic GERD. The GI dismissed all of my gluten symptoms and said it was just diverticulitis; he took lots of samples from the colon, which were all negative, and only one from the duodenum, which was also negative. Do I have Celiac? Who knows. I know I can't eat even traces of gluten without my body spitting it out. A hard gluten hit (last on in April from a gluten-free menu item) gives me brain fog, stiff joints, mood swings, depression, muscle aches, D, lethargy, etc., for 3-5 days. Perhaps I am sub-clinical Celiac; any inflammation is gone while on the diet and test results when I was on gluten were too low for a positive reading. As I've read the posts, there are a lot of people that are self diagnosed.

[kaki-clam]

My blood test was negative as well. I had a biopsy, he was looking for irritable bowel or something and that's how he found the Celiac. I insisted on the biopsy and thank god I did or it never would have been found.

[glutenfr3309]

Hi everyone,

So I saw the gastroenterologist for the results of my blood tests, barium followthrough and ultrasound this morning. A 'very satisfactory set of results' in his words. Which meant negative blood tests for celiacs, and the ultrasound and xray were clear.

It took a lot of strength not to cry in his office- I was so hoping for a diagnosis, or a reason why I feel like I do. But nothing. He said he thinks it's a brain-stomach link, and a problem with my nervous system and my gut. He's put me on medication for 5 weeks, motilium and colpermin, and then I have to go back and see him.

Prior to the tests, which were done about a month ago, I didn't cut out gluten. Granted, I barely ate anything with gluten in it, but I guess maybe it's not a gluten intolerance thing? Maybe it is all in my head-I feel such a fraud. I know something's wrong but medically they can't find anythin wrong so maybe I am making it up.

I cut out gluten for the last week or so and definitely feel so much better! My poo has become brown again (albeit still floating and poorly formed) and I have more energy. But now I've been told my blood work is negative for celiacs or malabsorption, I feel like a fraud doing it, cutting gluten out I mean, as there is no rhyme or reason why I should. I guess o probably shouldn't cut it out now he's put me on these meds too?

Any advice or if you've been in a similar situation, please help! I feel such a fraud and really alone.

if you saw a difference without eating gluten then continue with it!! it may just take time...everyone heals at different paces.

i tested negative by both blood and biopsy BUT i know that my body does not like gluten. i will never eat it again! i felt the same way as you, that maybe it was all in my head. luckily, i had a doctor who believed that even though i was negative i could still have an intolerance. he also believed that because i had the beginning stages of inflammation in my small intestines that had i not done anything about it early on most likely 20 years from now i would have been positive for celiac. that's enough for me right there- i will never eat gluten.

[kwylee]

I'm so glad you do not have celiac disease. But neither do I, however gluten and casein make me dizzy and anxious and distress my intestines, as evidenced by the same BM problems you note. All of that cleared up once gluten/casein were eliminated.

I had a blood test seven years ago when I first started with my "mystery symptoms" and it showed I had NO REACTION WHATSOEVER to gluten or casein. But I have since found out THROUGH STOOL SAMPLING that I am genetically sensitive to gluten and definitely reactive to casein, so I had to have been reacting back then, it just wasn't detected by blood. I read over and over here that people test negative in their blood but know in their hearts that something is wrong. That is how I felt seven years ago. I am 55. Today I feel better than I did in my 20's.

[missceliac2010]

Any advice or if you've been in a similar situation, please help! I feel such a fraud and really alone.

First off, you are not a fraud! You know what makes you feel better. I had the same experience! I have negative blood tests for celiac and negative biopsies after an upper GI test. To go through that second test and still have it come out negative for Celiac was frustrating.

However, while waiting for the results, the GI doctor I saw in the hospital told me to start a gluten free diet, because he suspected it. Once I left the hospital (I am very ill, no one could figure out why, I couldn't keep down even liquids, and I had to be hospitalized for 2 days to keep me hydrated and do lots of tests in a hurry.) When I left the hospital I went gluten free.

About a week later, I found out that I could not follow up the GI doctor who did my test in the hospital, because he didn't take my insurance. I so dislike the GI doctor I had seen once before when my problems originally started (that does take my insurance), I asked my regular doctor to get my results. He did. My regular doctor gave me the news that both tests were negative for Celiac. I was devastated.

However...... when I told him how much better I feel being gluten-free, he said "I am diagnosing you with Celiac Disease based on positive results from an elimination diet." My doctor's daughter has Celiac, so he is very familiar with the disease, and how well it can hide. He told me that since I had had nothing to eat in days when the tests were done, I likely had a classic false negative. He explained that the tests we currently do to detect Celiac require the patient to be very sick and very "glutented" to come out positive.

He offered another blood test after intentionally eating gluten for a week. I decided that was dumb to intentionally poison myself just so some dumb blood test came back positive. I know I have Celiac, and my doctor does too. My GI doctor still refuses to "officially" say that I have Celiac, but whatever. I don't need any special diagnosis to eat gluten-free. It's not like cancer where I need treatment or something. The cure is simply to stop eating gluten, so tests really don't matter here in the U.S.

That's my experience. You are not alone. Many, many of us tell similar stories about these extremely un-sensitive tests. Good luck, and enjoy your new gluten-free improved life!!

[Ahorsesoul]

Just because the tests are negative it does not mean you do not have celiac disease or that you would not feel better going gluten free.

[LDJofDenver]

"So I saw the gastroenterologist for the results of my blood tests, barium followthrough and ultrasound this morning."

?

Good grief! I don't believe you can detect celiac disease via barium and ultrasound. Did you have an endoscopy with a small intestine biopsy?

Perhaps find another GI doc. Try to find a local celiac group/chapter and see if anyone can give you a referral to a GI doc who is familar with celiac disease.

[cassP]

"So I saw the gastroenterologist for the results of my blood tests, barium followthrough and ultrasound this morning."

?

Good grief! I don't believe you can detect celiac disease via barium and ultrasound. Did you have an endoscopy with a small intestine biopsy?

Perhaps find another GI doc. Try to find a local celiac group/chapter and see if anyone can give you a referral to a GI doc who is familar with celiac disease.

u were diagnosed on 8-8-08 ?!?? those are great numbers... do u by any chance have the DQ8 too???? lol... sorry im a nerd

[LDJofDenver]

u were diagnosed on 8-8-08 ?!?? those are great numbers... do u by any chance have the DQ8 too???? lol... sorry im a nerd

Yeah, 8-8-08. Easy to remember! Wow, not even at the 2 year mark yet. Certainly learned a lot since then, some of it the hard way!

Never did the genetic marker testing, since both my blood work and biopsy were positive for it. Plus my son has it as well (guess I'm his genetic marker!). I may do it "just for the record" sometime.

[Skylark]

Any advice or if you've been in a similar situation, please help! I feel such a fraud and really alone.

I spent my entire childhood told my stomachaches were psychosomatic. I took a lot of Bentyl since it was the only thing that would help. After a lifetime of stomach/GI problems I finally got fed up, decided it wasn't in my head, went on an elimination diet, and figured out I was gluten intolerant.

Removing something from your diet that makes you sick does not make you a fraud. It makes you sensible. The celiac tests are looking for a very specific type of autoimmune damage and it has to be severe to show up. They don't find anything in people who don't have a lot of GI damage but still get sick when they eat gluten.

I think doctors have all forgotten some level of kindergarten common sense. "If it makes you sick, don't eat it" should be said by a lot more doctors than it is currently.

[Takala]

I don't "officially" have it either.

I had a neurologist's office tell me over the phone that I had brain lesions, had to raise a stink to get an appointment to explain such, and then had Ms. Expert Dr tell me that had nothing to do with it, even when I told her that my own strict grain free diet (at that time) was slowly eliminating many of the neurological symptoms I had been plagued with and that she had no explanation for- and I was pretty classic as far as every other symptom, if one could be bothered to look it up on the internet or in a book or something.

She also lied to me, to my face, about other test results that she did not know I had already gotten from her uncooperative office. If only I had had a hidden recording of that one. Called me basically a head case.

There's a lot of crooked doctors out there who have figured out they can make money by following whatever the crooked insurance companies tell them to do. Diagnosing celiac disease or GLi would require them to just tell patients to not eaten gluten instead of taking whatever pill to mask the symptoms they haven't bothered to put together.

Nice catch. You don't diagnose this with barium anyway. Blood test, gene test, related diseases, biopsy, and/or symptoms. These idiots even missed the small persistent rash which was likely DH. My symptoms matched, so good bye docs telling me diet has nothing to do with my health.

[lucia]

I love this article by our own celiac hero Dr. Peter Green at the Celiac Center at Columbia University Medical School, because he takes the American medical community to task for being so irresponsible about this disease:

Why are U.S. physicians spotting only 3 percent of cases? Part of the problem is that celiac disease, because it

[tarnalberry]

I feel like a fraud doing it, cutting gluten out I mean, as there is no rhyme or reason why I should. I guess o probably shouldn't cut it out now he's put me on these meds too?

I'd say there's a very good reason to stay gluten free - you feel better that way. Why do something that you know hurts you? I mean, you could just as easily bang your head into the doorjam every time you walk into a bathroom, because there's no good reason not to, aside from it being unnecessary and hurting.

[jackay]

Stay off gluten. It takes time for your mind, body, and emotions to adjust to the changes in life from going gluten-free. I am self-diagnosed gluten intolerant because of all of my symptoms and because even CC makes me ill. My primary care doctor just said don't eat gluten, my GI didn't say anything. I have been on a full gluten-free diet since November, even though all of my tests have been normal. I have the HLA-DQ8 genetic marker, but the GI said that only gives me a 10% chance of having Celiac. I had the Celiac Panel blood test two years ago because of rashes I've had for a few decades; it was normal, which is not uncommon with (undiagnosed) DH. My rashes went away after 6 months gluten-free. I had the blood tests again in January and it was a probable false negative because I was on a gluten-free diet (you need to be on a lot of gluten before the tests). My GI symptoms started last September after getting the flu. I had the full endoscopy-colonoscopy in May, and it was normal except for minor asymptomatic GERD. The GI dismissed all of my gluten symptoms and said it was just diverticulitis; he took lots of samples from the colon, which were all negative, and only one from the duodenum, which was also negative. Do I have Celiac? Who knows. I know I can't eat even traces of gluten without my body spitting it out. A hard gluten hit (last on in April from a gluten-free menu item) gives me brain fog, stiff joints, mood swings, depression, muscle aches, D, lethargy, etc., for 3-5 days. Perhaps I am sub-clinical Celiac; any inflammation is gone while on the diet and test results when I was on gluten were too low for a positive reading. As I've read the posts, there are a lot of people that are self diagnosed.

This sounds very similar to my life. If only my doctor had told me about cross contamination, I could have healed six months sooner. I was off gluten except for cc when my doctor ordered the Celiac panel. I never had the endoscopy as I figured it was useless. I know I cannot consume gluten and have to be careful about cc issues.

[sandsurfgirl]

Unfortunately, your tests were not valid and your results were skewed. If you cut out gluten you can get a negative on blood tests because the offending item isn't in your body anymore. You have to be consuming a lot of gluten to come out positive on blood tests as well as endoscopy.

I totally disagree with the poster who said they were glad you do not have celiac. The tests you took do NOT tell you that.

The ultrasound and barium thingy are NOT tests for celiac disease so your GI is, well... to be blunt... a complete moron.

So you have a choice now. You can torture yourself and cause further damage to your intestine by finding a GI doc with a clue and eating a bunch of gluten to get a positive result (which may still not happen because the tests aren't all that great all the time.) I did come up positive on blood tests but there is no way I would have made myself sicker for a test.

Or, you can go gluten free and don't look back. If gluten makes you sick, then you have celiac in my non-doctor opinion. I believe that "gluten intolerance" is just baby celiac, but that is my personal belief. Not everyone agrees.

Dietary response IS a form of diagnosis and if you are doing well gluten free then go for it.

[kwylee]

I totally disagree with the poster who said they were glad you do not have celiac. The tests you took do NOT tell you that.

Please don't miss my point: that you can NOT have celiac disease, but still have severe symptoms from ingesting gluten.

[Aphreal]

I am so new to this I may be talking out of my butt.. get it? this is a celiac board.. butt? Ok bad joke anyway... I can understand the desire for a definiative diagnosis. It's almost like a closure. You are then able to say *yes I have this* and then not explain why you are gluten free.

The more I read of this board the more I think I don't even want to go to the GI. What is he going to say? Yes you have it... go gluten free. No you don't have it, its in your head.. which I will say, well I am gluten free and feel better so boo on you? Either way, I know I feel better gluten free and therefore, I will stay gluten free. Besides, I have been probed in every orafice repeatedly my entire life and frankly, I dont want to do it again and I don't want to eat gluten and make myself sick (while at the office no less) for them to tell me I have a problem. I already know I have a problem!

We are a number and a dollar figure to doctors. yes they care, bla bla bla but at the end of the day, we are their paycheck and the medical industry is a buisness. I think they become so used to running panels of tests, they do it without stopping to think.

YOU know your gut is telling you something. Let that be your diagnosis.

hang in there.

Tiff

[torimuse]

Just as everyone here has said. You're not a fraud. It's not all in your head. I had very similar feelings myself when I stumbled across this board. I went gluten free too soon, and my doctor wasn't able to test me, even if she wanted to. (which she didn't) I have since decided that my body is a better diagnoser than anyone could even try to be. If stopping gluten makes you better, that's the cure. Just make sure you know about all the side effects so that you're prepared when you go into withdrawl, or those secondary intolerances pop up. We've all been at the point you're at. Scared, not knowing why we feel sick, wondering if it's all a game of make believe. It's not. You're doing the right thing. Now the hard part is to stick with it.

[precious831]

All I can say is if you feel a world of difference being gluten-free then I think you should stay gluten-free,regardless of what the doctor tells you. I had both the blood and stomach biopsy, both negative but now I'm not so sure. The doc never met to discuss the results w/ me. He told my DH while I was out(after the procedure) that everything was fine. Then 3 months later I went to my regular physician and he told me I have IBS, what the GI said to him by letter. There was a lot of info that were never relayed to me, treatments, etc that the letter said the GI said...absolute lies! He never called, met with me or anything. So I was livid after that and I'm thinking of writing a letter and leaving that GI practice.

Later on I found out that I needed to ingest more gluten prior to the biopsy. Well I was gluten-free before I scheduled it. So for 1 month I tried desperately to eat toast twice a day. I was so sick, I could barely function. I am not going thru that biopsy test again! Once was enough for me.

I seriously had better luck talking to my toddler's pediatrician, who insists also that DD remains gluten-free because she too was symptomatic. He reviewed my entire history and listened more than any other doc did. I wish he was my GI doctor! He told me the same thing, stay off gluten for good.

Now I'm worried that he(my GI) didn't even do a good job. I have the symptoms, I am violently ill when I ingest gluten. I just wish we had more sensitive tests for this, I know how much some of us want to hear the proper diagnosis.

Goodluck with everything.

[T.H.]

Another word of encouragement! If you feel better, drop that gluten like a hot potato.

My GI, when we were looking for issues, told me he was sending a list of my test results to my dietician, and then he said something that made a huge impact on me: you send her a list of everything that seems to make you feel bad, too, because tests don't tell us everything.

His philosophy is that if it's making me feel bad, he doesn't care what the tests say, because something about it is obviously bad for me. Maybe it's a preservative, maybe it's a contamination, but just because HE doesn't know why it's bad doesn't mean the symptoms are in my head. All it means is that medical science hasn't figured out my problem.

I had the perfect example of exactly this situation. After I went gluten free, I noticed something weird: eating citrus gave me an ear ache, vertigo, and eventually a headache. I test negative for an allergy to this. However, for 2 YEARS before this, I had been to see an Ear, nose, and throat doctor and a neurologist for these symptoms. They both found nothing. They both told me it was stress, anxiety, etc...

It was all in my head, essentially. Being so dizzy I would fall over wasn't a REAL problem. I was, as you put it, a fraud. After that, I just kind of gave up, lived with the recurrent vertigo and pain.

I went gluten free and still had the vertigo. Discovered this weird citrus connection from keeping a food log, and stopped eating citrus. I haven't had any vertigo in the year since dropping citrus, and it comes back the few times I've accidentally ingested it.

My doc's view on this is: don't eat citrus. It's obviously bad for you, even if we're not sure why.

So it doesn't make you a fraud to avoid what is bothering you. Medicine is still learning, still figuring things out, and there's an awful lot about our bodies that they don't know. Choosing to listen to your body makes you smart, and aware, and everyone who has a problem with it can go get stuffed.

[sandsurfgirl]

If you are self diagnosed based on dietary response nobody else needs to know that. Tell people you have celiac disease. They don't know your medical history or what tests your doc took. And most people don't care either. Their eyes glaze over when anybody starts talking details about their health problems.

I would go so far as to say that if later down the line you switch docs and you say "I have celiac disease" they aren't going to question it. I got a new doc recently, told her I have hypothyroidism and she didn't ask me the ins and outs of how I was diagnosed. Granted there is medication for that and I had a script for it, but my point is, say you are celiac and save yourself a ton of hassle explaining to people.

[sandsurfgirl]

Please don't miss my point: that you can NOT have celiac disease, but still have severe symptoms from ingesting gluten.

I got your point. I happen to disagree with you. It's nothing personal, but when you are around here longer you'll see what that diagnosis means to people and how not having it affects them.

False negatives are common on the blood tests. If you have severe reactions to gluten you have celiac disease in my opinion. It's a flaw in the testing methods that causes years of undue suffering and much psychological suffering from those who feel like a "fraud" because they don't have a "real" diagnosis.

When you say "I am glad you don't have celiac disease" well, it's not something to be glad about when someone knows they have celiac, has symptoms of celiac and are being told by doctors it's in their head. That lack of definitive diagnosis affects people's ability to comply with the diet, their ability to convince others of the seriousness of their condition, and their ability to have mental peace with the lifestyle. NOT being diagnosed celiac because of false negatives on blood tests has far reaching complex affects on people's well being. Hence the original post.

I do not believe for a second you don't have celiac disease with the reactions you have and the dietary response you've gotten. The tests are flawed.