Want To Cry-So Frustrated!

[ravenwoodglass]

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.

As a sero-negative celiac boy can I second that! If only doctors had thought to have me just do a dietary trial, since I was a classic celiac symptom wise, it would have made an incredible difference in my life and that of my children. It has serious effects on kids when they are watching their mother die a little more every day.

[kwylee]

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.

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

[Ahorsesoul]

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

I just came home from my GI appointment. The results from the small intestine biopsies done 3 weeks ago says in black and white type: NO INDICATION OF CELIAC DISEASE. So if I go by this test, I do not have celiac disease which is incorrect. I have celiac disease but I was gluten free before the test so it does not show up because my intestines have healed back to normal. This does not mean I can eat gluten or that I do not have celiac disease. A gluten free diet is probably the best test.

[kwylee]

I just came home from my GI appointment. The results from the small intestine biopsies done 3 weeks ago says in black and white type: NO INDICATION OF CELIAC DISEASE. So if I go by this test, I do not have celiac disease which is incorrect. I have celiac disease but I was gluten free before the test so it does not show up because my intestines have healed back to normal. This does not mean I can eat gluten or that I do not have celiac disease. A gluten free diet is probably the best test.

But if I did a stool test and it showed that I was genetically intolerant to gluten, does this mean I have celiac disease??? I am not being argumentative, I am asking simply because I want to know.

[Janelee63]

Wow...this is an interesting thread. I am the one who does not believe that I have Celiac...but my doctor insists that I do have it. Long story short...I have been really sick lately...seems like it came on after I made a batch of chocolate cup cakes and ate more than my share! At any rate...I am starting to believe....I have an endoscopy tomorrow to check on my ulcers...and they are going to also do biopsies. A year and 1/2 ago my doctor told me I had a two stomach ulcers and that he also thought I had Celiac...HOWEVER....until this week when I met with his P.A....I never realized I had an inlarged small intestine...and it also showed something on the biopsy...but I can't remember what she called it...He never told me that. After this is done the P.A. is sending me to a nutritionist who specializes in Celiac. At any rate... Mine even told me that they don't really have "specific" markers for the disease. Not all the test are accurate...therefore...you pretty much have to try going gluten-free to see if you are. Iit seems like there are some really bad GI's out there. If you get sick eating it...that should be proof for the GI...especially if he can't come up with anything else.

[kitgordon]

I'm not sure anyone knows where the line really ought to be drawn between "gluten intolerant" and "celiac disease". If it makes you sick, don't eat it. If you have an "official" diagnosis, I guess you use it. If you don't (I don't), use the description that feels right to you, and don't poison yourself. I say I have celiac disease because my mother and numerous other relatives have been diagnosed, and I have the same symptoms, but the important thing is that you treat it and get well, not what you call it. My two cents.

[Janelee63]

But if I did a stool test and it showed that I was genetically intolerant to gluten, does this mean I have celiac disease??? I am not being argumentative, I am asking simply because I want to know.

I am curious too. I am intolerant to a lot of foods....but it's not called anything...I am just intolerant.

Any what is the point in having an endoscopy if you have been off glutens for a while. Of course it's not going to show up?? Why do they do that?

[txplowgirl]

I consider myself to have Celiac. I have not had any tests but get sick as well as have depressive and anxiety issues when I eat it. AND, untreated celiac can lead to cancers.

Seems to me with the family history I have I better stay gluten free.

On my mother's side. She just lost her only sister to esophageal and lung cancer three weeks ago, my mom is/was the baby of 9. Including this sister she also lost 4 brothers from stomach and colon cancer. Her father and 3 of his sisters to stomach and colon cancer. Several cousins ranging from brain, stomach, lung, breast and kidney cancer.

My father's side. My father, 1 of 11. died of colon cancer, 3 of his brothers and 1 sister ranged from having colon, stomach and breast cancer. His mother from ovarian cancer and her sister from lung cancer.

I have a 28 year old cousin who died from brain stem cancer. I have a 35 year old cousin right now who is dealing with liver cancer. He is a nephew to 2 of my cousins who have kidney and colon cancer. I could go on and on but I won't.

No matter what you call it, it still messes with you. DO NOT EAT IT!

[kayo]

I'm not sure anyone knows where the line really ought to be drawn between "gluten intolerant" and "celiac disease".

Exactly. I firmly believe they're the same thing but the right tests haven't been created yet and all of the genetic markers have not been discovered yet. I'm considered non-celiac because I don't have the currently recognized genetic markers yet I have all the symptoms and signs of celiac.

[kwylee]

Went back through my research notes. Here is a good link from the American Celiac Disease Alliance that explains the difference between Celiac Disease, gluten intolerance and wheat allergy.

Open Original Shared Link

[Janelee63]

Another thing to consider...I personally don't want all these ailments and diagnosis put in my medical records. It effects your ability to get life insurance and might effect your health insurance down the road. So having a gluten intolerance might be better from that stand point.

[kwylee]

Another thing to consider...I personally don't want all these ailments and diagnosis put in my medical records. It effects your ability to get life insurance and might effect your health insurance down the road. So having a gluten intolerance might be better from that stand point.

Whoa, that's an excellent point. I work in life insurance and I can't believe I didn't think of that.

[sandsurfgirl]

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

Yes I am. That is my opinion. I personally do not believe in gluten intolerance. That's my personal belief based on a lifetime of experience and reading the experiences of many many celiacs. I think gluten intolerance is just baby celiac waiting to get ugly.

I was so sick I thought I was dying when I got diagnosed with celiac. I was mostly bedridden for months, just getting up to do the necessities and forcing myself to function for my kids. Yet there was dispute about whether I had celiac because only one of the panel of 5 tests came up positive.

I had been gluten light for years because I was told I had intolerance. Bullspit. I had celiac all that time. My history is long and sordid with all the terrible things untreated celiac did to my body including stunting my growth as a child and two horrific pregnancies resulting in premature birth for my son.

AND MY RECOVERY on the gluten free diet has been nothing short of miraculous. Not only my symptoms, but my whole personality has changed and I have a very long thread with all the people who have had the same thing happen to them. I thought I was high strung and type A. Turns out it was just gluten on my brain. You don't have that amount of evil happen to your body from an intolerance.

I had MAJOR electrolyte imbalance when I was first diagnosed to the point where I was so dizzy I could barely function. Yet my electrolytes showed up "normal" on the tests. Thank God I had a doc who had a clue who said he didn't care what the tests said, I needed electrolytes. Once I started replacing them and super hydrating I could function again. Still to this day I must mind my hydration or I will get sick.

My 6 year old son has severe reactions to gluten, including vomiting, stomache pain, diarrhea, nose bleeds, anxiety, facial tics, irritability, asthma troubles yet his blood tests came up negative.

He has celiac in my opinion. I think it's comforting to think you don't have celiac because maybe that means you can cheat a little. Maybe it means you can feel better that you might not have the higher risk of cancers and death, but the reality is that if you are reacting that strongly to gluten then I think it's celiac disease. I could care less what the inaccurate, poorly designed, weak tests say.

People suffer and are tortured needlessly over those tests and it's unconscienable that the medical community just lets it keep happening.

[mommida]

This is going to add even more confusion to the topic. Eosinophils in the digestive tract. i.e. eosinophils showing up anywhere in the digestive track from the esophagaus to the colon. These disorders are increasing in diagnoses. Perhaps just as difficult to get diagnosed as Celiac.

Specialist in the disorder will tell you it is a mystery. Some things seem to be connected to a majority of the cases.

-There seems to be a "trigger" food or possibly an airborne "allergen" (the word allergen is used for lack of a better term, normal allergic reaction can not be disgnosed in the body)

-Allergy testing is inconclusive. (My daughter who was diagnosed with EE and probable Celiac was negative for ALL allergens.)

-Symptoms really seemed like gluten reactions from her perspective. Except more vomitting and GERD.

- Eosinophils, once activated, stay activated for 12 DAYS. Eosinophils are whited blood cells usually reserved for combatting PARASITES in the body and have a small spearlike to attack. The cells are unable to discriminate and damage HOST tissue.

-The cells are not always visible to the scope as they can be embedded into the tissue. This gives the surface area the appearance of normal healthy tissue.

-The diagnoses relys on the pathology testing/report. The cells absorb the red dye staining. (As with Celiac, you are hoping the biopsy sample was taken from "the correct spot")

- Adults have to reach a magic number amount of Eosinophils for diagnoses.So I would definately ask what amount any testing you have done shows.

If you notice that you feel better avoiding gluten, DON"T eat it. If you are going to pursue a medical diagnoses, make sure you are with the best doctor you can work with.

There can be so many ways gluten is hurting people, and we may be at the tip of an iceberg!

[kwylee]

Yes I am. That is my opinion. I personally do not believe in gluten intolerance. That's my personal belief based on a lifetime of experience and reading the experiences of many many celiacs. I think gluten intolerance is just baby celiac waiting to get ugly.

I was so sick I thought I was dying when I got diagnosed with celiac. I was mostly bedridden for months, just getting up to do the necessities and forcing myself to function for my kids. Yet there was dispute about whether I had celiac because only one of the panel of 5 tests came up positive.

I had been gluten light for years because I was told I had intolerance. Bullspit. I had celiac all that time. My history is long and sordid with all the terrible things untreated celiac did to my body including stunting my growth as a child and two horrific pregnancies resulting in premature birth for my son.

AND MY RECOVERY on the gluten free diet has been nothing short of miraculous. Not only my symptoms, but my whole personality has changed and I have a very long thread with all the people who have had the same thing happen to them. I thought I was high strung and type A. Turns out it was just gluten on my brain. You don't have that amount of evil happen to your body from an intolerance.

I had MAJOR electrolyte imbalance when I was first diagnosed to the point where I was so dizzy I could barely function. Yet my electrolytes showed up "normal" on the tests. Thank God I had a doc who had a clue who said he didn't care what the tests said, I needed electrolytes. Once I started replacing them and super hydrating I could function again. Still to this day I must mind my hydration or I will get sick.

My 6 year old son has severe reactions to gluten, including vomiting, stomache pain, diarrhea, nose bleeds, anxiety, facial tics, irritability, asthma troubles yet his blood tests came up negative.

He has celiac in my opinion. I think it's comforting to think you don't have celiac because maybe that means you can cheat a little. Maybe it means you can feel better that you might not have the higher risk of cancers and death, but the reality is that if you are reacting that strongly to gluten then I think it's celiac disease. I could care less what the inaccurate, poorly designed, weak tests say.

People suffer and are tortured needlessly over those tests and it's unconscienable that the medical community just lets it keep happening.

Reading your story, I can understand why you are so passionate about this, and I agree with you when you present that you are entitled to voice your opinion or decide what disease YOU personally have. I also agree that had I not taken gluten out of my diet, I could have developed celiac disease, cancer, etc, if my system was pre-disposed. Totally agree with that. I myself went cold turkey and have not purposely ingested it once (or casein, which affects me even worse than gluten). Nor do I intend to. I do not minimalize what gluten intolerance is.

I read the stories here and other forums of people whose lives have been horribly affected by celiac disease, the pain and the effects of malabsorbed nutrients, plus the other off-shoot conditions like arthritis, fibromyalgia, osteoporosis, and others too numerous to mention. For me to intimate to others that my story is the same is unfair to those who suffer as you do. Just as I would not tell people I have osteoporosis if I have borderline osteopenia, or diabetes if I have a glucose level of 98.

I've read that more than half of humans on the planet, and that's a conservative estimate, could possibly be intolerant to gluten. It is MY opinion that they all do not have celiac disease, just as a baby could be born genetically intolerant to gluten, but is not born with existing celiac. But there is 150% agreement that giving up gluten is the treatment.

Lastly, with all the talk lately of gluten intolerance, and the numbers of those realizing they have this are growing, I think it is important for those with celiac disease to be singled out for reasons of research and health care. My gluten intolerance was treated with simple avoidance. Other stories may not be the same.

[Algegra]

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

[kwylee]

Eosinophils in the digestive tract. i.e. eosinophils showing up anywhere in the digestive track from the esophagaus to the colon. These disorders are increasing in diagnoses.

Thanks so much for this info.

[SueQueBlue]

Wow-so many of the things I am reading from you guys sound just like my life!

My stomach issues started much later in life (I'm not that old, only 42). I always felt like I had IBS issues in my life, getting it from my mom. But it didn't really bad until about 2 years ago. I had stomach pain, had a CT and ultrasound for my gall bladder. They were both negative for anything. Then I went to a GI, told him my symptoms, and he still felt it was the gall bladder. Had a HIDA scan, that showed my gall bladder wasn't working very well. Had the surgery in June 09, but instead of feeling better, I felt the same, and then later, worse than before. I was having bowel issues, stomach pain and needed narcotics to get me thru the day. I went back to the GI, he did an upper endoscopy and it was negative for anything but mild inflammation, said it was IBS and gave me a prescription that did nothing. My primary care dx'd me with the IBS getting worse with gall bladder removal and Fibromyalgia. She did test me for Celiac, but I don't know which tests specifically, and they all came back negative. I even went to a Rheumatologist/Immunologist because I had some elevated inflammation markers, but he did a gazillion blood tests and nothing specific came up.

Since my GI locally didn't do anything for me and my primary care didn't know what else to do, she referred me to UC Davis in Sacramento. She felt they would know more, and might have some other ideas. Sure enough, when I got there, the dr said it was probably IBS due to my history, but she did a colonoscopy (negative) and a barium follow thru for the small bowel (also negative). The last thing she wanted me to do before settling on the IBS dx, she did an inflammatory bowel disease blood panel. Apparently, Celiac is one of the tests for that panel, and the EMA IgA came back positive. Just to be sure, they scheduled me for another upper endoscopy. Now remember, I just had one of these 7 months ago that was essentially normal. Well, not this time. My stomach had mild/moderate inflammation, and had villous blunting, and numerous "intraepithelial lymphocytes" (whatever that is).

My point is (sorry if this is too long), is that I had symptoms for 18 months and probably longer, and never tested positive until I was sick, sick, sick. Yeah, saying "I have Celiac Disease" makes people listen and realize it is an actual disease, and that makes you feel like you have some greater impact. But honestly, I wish I would have known more about how going gluten-free can heal you before I got to this point. So I say, if going gluten free makes you feel better, but you haven't been diagnosed, so what. The proof is in the results, and whatever you want to call it, do it anyway, and don't wait for an official 'diagnosis'.

I'm a newbie to all this-just diagnosed this month, so I don't have all the answers. I just know how miserable I have been and how hard it has been for my family to see me so sick. I am looking forward to feeling better, and I hope everyone who is suffering from this gets what they need to feel better.

[Skylark]

I actually don't think all gluten intolerance is the same. There are documented effects of gluten peptides on innate immunity, as well as celiac humoral immunity, and documented effects of wheat germ agglutinuin on some sensitive people. Basically, gluten is somewhat indigestible and causes all sorts of problems. Wheat is also rich in fructans, which makes it a problem for people with fructose malabsorption or digestive tract bacteria that thrive on the fructans. There are also true allergies. I think we're going to eventually find out that wheat/gluten intolerance breaks down into a lot of different mixtures of celiac and non-celiac problems.

[GFinDC]

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

Welcome to the forum Algegra! If you get your test results from the doctor and post them here, there are some smart people around who can help interpret them for you. The tests are not perfect by any means, and sometimes the docs don't even do all the tests they should. Guess the docs aren't perfect either!

Anyway, hang around and ask questions. There is also a pre-diagnosis/testing section here with lots of threads on testing etc..

It sure sounds like you could be one of us. The other test they do besides the antibodies tests is an endocscopy of the small intestine. You have to keep eating gluten for these tests to work though. IF you stop before testing the results are even more suspect.

[rdunbar]

I recently got Dr. Peter Greens' book "celiac disease; the hidden epidemic",

it's very informative, but was wondering why he recommends that people NOT self-diagnose for celiac disease. He says something about avoiding unnessisarily going on an inconvienent lifelong diet. With biopsies and blood tests being so inaccurate and unreliable, and doctors being so notoriously clueless what other option do you have other that to self-diagnose? I mean, what is so convienient about having chronic diarrea, horrible anxiety, torturous DH, tingling fingers and arm, achy joints, lose of balance,and the list goes on and on????

after going to the doctor and having him ask ME what is wrong with my scalp, I have no problem self-diagnosing when most of my health problems have almost completly resolved on a gluten-free diet, and the DH is getting better slowly, it's not nearly as painful.

Dr. Green states that DH is always celiac disease, so I really see no reason to get any testing(for myself). He says even skin biopsies for DH can be false negatives if you are not currently ingesting gluten.

He says biopsies are the golden standard for diagnosing celiac, but if the surface area of the small intestine is the size of a tennis court, how can you really know whats going on when you take a sample smaller than a postage stamp from it??

[ravenwoodglass]

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

Welcome to the board. After you are done with testing do be sure to give the diet a good strict try. Your body knows the answer.

[sickchick]

Always trust your intuition (and your body). You will figure it all out- you are in the right place- and don't let your DR get you down.

I had to beg my ND to have the blood test done- she was pushing a Thyroid diagnosis- but ALL my tests over the years were perfect.

My blood test was positive for celiac disease.

Breathe and hang in there! I know how stressful it is.

[Algegra]

Thanks everyone. I called the office and asked that they mail the actual results to me - will post when I get them. Really appreciate the advice.

[ravenwoodglass]

Thanks everyone. I called the office and asked that they mail the actual results to me - will post when I get them. Really appreciate the advice.

Just keep in mind that false negatives are not uncommon. When your done testing give the diet a shot no matter what the results are.