Prometheus Came Back Negative!

[Imanistj]

I've been posting occasionally for the past two months as I ate tons of gluten and then waited for the celiac serum test to come back from Prometheus. Prior to that, I wrote mostly to moan because I could never adjust to the difference in gluten-free baked goods from wheat products. I am extremely sensitive to changes in taste and texture and I was totally miserable until I found Udi's bread. God bless everyone who wrote and said how superior Udi's products are. Very shortly after I had 6 loaves of Udi's in my freezer I was told to go back on gluten so the freezer is still full. I had had a bad experience with an arrogant, dictatorial gastroenterologist/hepatologist and because I had lost all confidence in him I had returned to the GE doc who had recently diagnosed my gall bladder problems and sent me to a surgeon.

I had seen the unpleasant GE/hep doc because of a fluke. My fibromyalgia doc had ordered a bunch of tests that might explain inflammation and muscle pain. One of his tests indicated I had autoimmune liver disease. I panicked and asked to consult with a hepatologist and that is how I found Dr. "B" whom I shall always dislike. At the first appointment he asked me a few questions and ordered more lab work. The tests he ordered said my liver was fine but I had a positive transglutaminase. I was given this news over the phone and the nurse told me I had celiac disease, that I should go on a gluten-free diet, and I needed to find a dietitian. There was no explanation for the normal liver values. When I finally had a follow up appointment with Dr. B he insisted I had celiac disease. I asked if he could be certain based only on the lab test. He said he was sure but he was going to get a biopsy anyway. I remarked that I was happy about returning to a gluten diet and he said I didn't need to go back on gluten. He said it took 6 months for the bowel to heal and he could tell even though I was off gluten. I did go back on gluten and 12 days later I had a normal looking endoscopy. Dr. B said my duodenum looked fine but microscopic examination of the biopsies could indicate damage. He took only two biopsies! When they came back negative I asked Dr. B about the positive autoimmune liver disease test and he brushed me off saying the result was only a "marker" for the disease. My genetic studies showed I had both DQ2 and DQ8. I then said I never felt better while off gluten and didn't feel any worse when I returned to a regular diet. I asked if I had a negative biopsy, and I ate gluten, and I really did have celiac disease, what part of me was being damaged by the gluten. Dr. B said nothing was being damaged! I told him I found the gluten-free diet incredibly unpleasant and he just became angry. He said my genetic studiers were sufficient reason to eat gluten free. I was dismissed with the order to remain on the diet and get blood tests specific to celiac and liver disease in 6 months.

I went back to my original GE and told him the whole sad story. I also reminded him that my brother and I both test positive for Lupus and neither of us have the disease. It appears I have three false positive tests for three autoimmune diseases. My old GE, Dr. "N" said he does not think I have celiac disease and then told me that he had biopsied my duodenum just prior to the gall bladder removal and that the tissue was totally normal. He went to school with Dr. B and was reluctant to criticize him, but when I asked Dr. N if he would have put me on a gluten-free diet PRIOR to the biopsy he said no. He told me he could tell I would never feel safe until I was retested and that he was going to order the labs through a special lab (Prometheus) after I had returned to eating gluten. He wanted to follow the blood work with a test in which I swallow a tiny camera that would photograph my entire digestive tract. However, my insurance won't cover that test to rule out celiac. I am comfortable knowing that two biopsies of my duodenum have come back negative. I did ask for a follow up appointment with Dr. N so I can talk to him personally. If he wants to see me every six months that's fine, but my family physician tests my liver every 3-6 months because I am on a statin. My liver has always tested just fine. I think I can just continue seeing my family MD and let her do the tests. However, if Dr. N does want me to come back, I will.

Now, to all you great people on this forum--Thank you for the support and information you have offered while I have been a member. I think of many of you as friends. I wish every one the best possible health and my fingers are crossed hoping that medical science discovers a medication that stops the course of celiac disease damage and allows you to eat as you please. On Sunday afternoon I will drop in at the Central NY Celiac Support Group meeting and donate any unopened gluten-free food I have, along with my Gluten-Free Grocery Shopping Guide book.

Nancy

[ravenwoodglass]

I hope you issues resolve or that they find out what is going on. However with this

"The tests he ordered said my liver was fine but I had a positive transglutaminase." I have a feeling you will eventually be back.

[jerseyangel]

Thanks for the update--best of luck to you

[Imanistj]

I hope you issues resolve or that they find out what is going on. However with this

"The tests he ordered said my liver was fine but I had a positive transglutaminase." I have a feeling you will eventually be back.

Well, all I know is that Prometheus says I'm negative, I had duodenal biopsies taken twice, about six months apart in 2009 that are normal and I don't feel any different either on or off gluten. My false positives for lupus and autoimmune liver disease, and my brother's false positive for lupus have not yet resulted in any disease. I will be 66 in April and he is 70. Something is going to get us fairly soon. I am far more afraid of liver disease than celiac, which can be controlled by diet. If it IS celiac at least I will know how to follow the diet. My brother will never follow any restrictive diet. I don't see my nice gastro doc until March 5. Maybe he will want to retest me or get more biopsies in the future. However, he told me at my last appointment he really doubted I had celiac. Most of the people on this forum don't doubt that they have celiac disease--they know they feel better when they don't eat gluten. It's possible that someday I will rejoin this forum and continue to ask what gluten-free foods taste best. At least I have already learned that Bob's Red Mill chocolate cake mix really tastes good and that Udi's bread means I can have decent sandwiches.

Nancy

[Imanistj]

Thanks for the update--best of luck to you

Hey, Jersyangel--

One good thing came of my six monthe as a celiac. I asked Sally at Nature Tyme to carry Udi's bread and she was working on it whan I went back on a regular diet. I emailed her to say I might not actually need the bread if I tested negative and she said she planned to continue negotiating with Udi's distributor even if I no longer needed any. I assume that by now, the celiacs in the Syracuse are have access to the bread.

Nancy

[ravenwoodglass]

Well, all I know is that Prometheus says I'm negative, I had duodenal biopsies taken twice, about six months apart in 2009 that are normal and I don't feel any different either on or off gluten. My false positives for lupus and autoimmune liver disease, and my brother's false positive for lupus have not yet resulted in any disease. I will be 66 in April and he is 70. Something is going to get us fairly soon. I am far more afraid of liver disease than celiac, which can be controlled by diet. If it IS celiac at least I will know how to follow the diet. My brother will never follow any restrictive diet. I don't see my nice gastro doc until March 5. Maybe he will want to retest me or get more biopsies in the future. However, he told me at my last appointment he really doubted I had celiac. Most of the people on this forum don't doubt that they have celiac disease--they know they feel better when they don't eat gluten. It's possible that someday I will rejoin this forum and continue to ask what gluten-free foods taste best. At least I have already learned that Bob's Red Mill chocolate cake mix really tastes good and that Udi's bread means I can have decent sandwiches.

Nancy

Hopefully it's not liver disease. As you can see from my sig I have experienced that in my own family. If your not jaundiced I would try not to worry about it too much though if possible. It sounds like your doctor is trying to be helpful. You may also have more than one thing going on and I know how frustrating it is to feel sick and not get any answers. I hope they get things figured out for you soon.

[jerseyangel]

Hey, Jersyangel--

One good thing came of my six monthe as a celiac. I asked Sally at Nature Tyme to carry Udi's bread and she was working on it whan I went back on a regular diet. I emailed her to say I might not actually need the bread if I tested negative and she said she planned to continue negotiating with Udi's distributor even if I no longer needed any. I assume that by now, the celiacs in the Syracuse are have access to the bread.

Nancy

You did a great service (good bread is no small thing to a Celiac!) to Central New York Celiacs in the short time you were gluten-free! Pretty amazing

[mommida]

From your post you are unsure about the liver disease being a "marker" of Celiac disease.

There is a connection between the two. If a person has the auto-immune liver cirroshis (spelling?) they often find out they have Celiac. I don't have enough free time to pull up all the articles to pull up the statistics, and they often have conflicted numbers. Just because you don't like that doctor doesn't mean he wasn't telling you the the most up to date information.

If you come back, we'll be here!

[Imanistj]

From your post you are unsure about the liver disease being a "marker" of Celiac disease.

There is a connection between the two. If a person has the auto-immune liver cirroshis (spelling?) they often find out they have Celiac. I don't have enough free time to pull up all the articles to pull up the statistics, and they often have conflicted numbers. Just because you don't like that doctor doesn't mean he wasn't telling you the the most up to date information.

If you come back, we'll be here!

Form August until a few weeks ago I spent hours researching celiac disease. I am a retired Registered Nurse and I utilized professional journals in my search. I traveled to the Boston area and attended an excellent seminar put on by the New England Celiac Conference. I read anything I could find by Dr. Peter Green of Columbia and Dr. Kelly of Deaconess Beth Israel. I joined two forums and read what celiac patients experienced. I eventually learned of the connection between celiac disease and liver disease and I realized that is why Dr. B ordered the test for autoimmune liver disease. My brother and I both have asthma and type II diabetes and he also has terrible arthritis. We both test positive for lupus but neither of us has developed it. I already have at least two autoimmune diseases and when I realized I tested positive for two more, but haven't developed those diseases, I took the diagnosis of celiac disease seriously. Unfortunately, I began to lose confidence in Dr. B during my second appointment with him. At my last visit with him he lied to me twice. I was told very clearly by the nurse who assisted Dr. B with my gastroscopy and biopsies that he had taken six biopsies; two from the duodenum, two from an inflamed pyloric area and two more from the junction of the esophagus and the upper stomach. The nurse told me I was being tested for Barrett's esophagus. When a doctor obtains specimens he delegates the job of labeling the specimens and ordering the correct pathology tests to that nurse. I found the nurse believable. When I called the office a week later and asked for the report of the pathologist I was told everything was negative. It didn't surprise me that the duodenal biopsies were normal because I had none of the GI symptoms associated with celiac disease. My original complaint that sent me on this medical roller coaster was, and is severe and lasting pain and fatigue in any muscles involved in any type of exercise or stress--even when the effort is only moderate. More importantly, I didn't feel any different whether on or off gluten. At the last appointment I asked Dr.B if I really have celiac disease in view of the fact that the gluten-free diet didn't help, that I a negative gliadin and the positive findings were a positive transglutaminase and genetic tests. I had already learned through my extensive research that gliadin is no longer considered a very specific test. I mentioned it only because it was one of many tests the doctor had ordered. (Jihad obtained copies of some of my bloodwork, so I knew gliadin had been one of the tests.) Dr. B snapped at me that he didn't use gliadin as a test because it wasn't very accurate. I chose no to challenge him because I didn't want to antagonize him. I then apologized for asking but told him I felt I did have to know, when everything I had read, and been told buy other celiacs stressed that many biopsies should be taken from the duodenum, did he obtain only two. He hesitated a little and then consulted his path reports. He told me very tersely that he had obtained four. I told him his nurse had said he sent six specimens from three locations and that there were two from the duodenum. I don't recall exactly what Dr. B said but he just became very irritated. I changed the subject and asked why I had tested positive for autoimmune liver disease but every liver test that was taken and then repeated came back within normal ranges. He was quiet for a moment and then said the test was a marker. I interpreted his answer to mean I had a positive test for autoimmune liver disease just as I have a positive test for lupus. Perhaps he did mean the marker indicated celiac disease. I next asked him that because of the positive tests for transglutaminase and genetic studies, no GI celiac symptoms or response to a gluten-free diet, and two negative biopsies, what was I injuring when I ate gluten. He muttered, "Nothing." Then he spit out at me that my genetic test results were reason enough to stay on the gluten-free diet. I was very upset and I knew I wanted to fire this doctor. Still, I almost always succeed in walking away from such an emotional upheaval before I make a fool of myself, and I simply asked him what he wanted me to do. He said eat gluten-free, get a lot of blood work every six months, and to return to see him in six months.

I left and spent a couple days considering my options. Fortunately, I had a gall bladder surgery follow up with Dr.N the next week and I told him how I felt. This man is an excellent listener and he let me tell him everything I though was pertinent. Then, he talked and I listened. He told me to go back to eating gluten and after a while to get more blood work. Those tests went to Prometheus and all came back negative. I am staying on a regular diet and will see Dr. N in early March.

In no way am I not taking the possibility of developing celiac disease lightly. I will ask Dr.N if he wants to follow me and periodically test for liver disease and celiac disease. I will remind him that I see my family physician every three months and give him the opportunity to delegate the testing to her if he feels I don

[mommida]

Hey Nancy,

Could you stay with us on the forum?

You happen to have the same genes as my daughter (DQ2 and DQ8) and we are having some problems. All was fine for about 5 years on the gluten free diet for Celiac. Then came the Eosinophilic Esophagitis. She was put on the elimination diet, was doing great. Then the bottome has dropped out again. She is 7 years old, 48 inches tall and just made it to 50 pounds. (Let's hope she doesn't start losing more weight again.) She just had a follow up scope and the tissue looks normal. Still waiting on the pathology report.

So now we have to go on the zebra hunt to find out why she is losing weight, stomach pain, head aches, tired all the time, I believe she is craving salt, and seems to have yeast issues. (could be adrenal function) She has to go for more tests and I wish there was a clear cut path to start on in stead of having the poor kid poked more. She has been hospitalized on avarage of once a year for dehydration. Every time one of the bad bugs comes around she just can't stop vommitting. One time when she 4, she was on the spot before having to go in the neck. Everone was missed or blown, and I could even count the poke holes in her.

With your medical experience you could help some people if you choose to stick around.

I don't blame you one bit for not getting along with a doctor.

Here's a joke for you...

What do you call the guy who graduated at the bottom of the class at med. school? Doctor.

[Imanistj]

Hi Momminda,

I am a retired nurse, almost 66, and every day my nursing knowledge grows older. Pediatric medicine is often quite different from the treatment of adults. I hope you have found a really top notch pediatric department in a fantastic medical center. You didn't mention where you live or where you go for medical care. You said your daughter is DQ2 and DQ8 positive. Is she positive or negative for transglutaminase and biopsies? Have you seen a genetic counselor? I'm sure the accounts are not plentiful, but occasionally the story of a child who has had years of baffling symptoms and is finally diagnosed with a rare genetic condition appears in the news. Does your insurance fight against her tests and treatments? Has her illness affected her intellectual and physical development other than physical size and weight? Has she had extensive allergy testing recently? How old was she when she first became ill? I was a pediatric nurse (in a small community hospital, nothing like a big medical center) from 1977 to 1990 and I assisted with many blood draws on children with small or poor veins. My heart goes out to your daughter.

I haven't tried to withdraw from this list and I believe it is possible for members to email me. I will check to make certain I selected the option to receive personal email. I no longer read all the new posts on this list but I am notified each time someone posts to this specific topic.

Nancy

[mommida]

My daughter's Celiac testing was more than five years ago. She was too ill for the endo. w/ biopsy at the time. Celiac blood panel had only one positive and one borderline result. We had to rely more on the genetic test and gluten free diet. EE is diagnosed through the endoscopy and biopsy route ~not a single blood test. She will have to go in for more tests for something up to date.

She had problems with bilirubin levels and was hospitalized when she was a few days old. Only breastmilk stayed down. (Not even the most hypoallerginic formula.) Celiac issues showed up at the first introduction of rice cereal w/breastmilk at 7 months. Hospitalized for dehydration with a UTI/bladder infection from the gluten trial for teting. Genetic test results came in at 17 months. Hospitalized for dehydration for rotovirus and strep. No other issues until she August of 2008 when she caught the bug that was going around. She vomitted blood and was hospitalized for 4 days. She developed into daily vomitting and stomach pains.

All allergy testing was negative, that was last winter.

Education level, she is ahead. When she is ill, there is a dramatic drop in all concentration.

We drive to St. John's on the borderline of Detroit. We are lucky to be close enough to fantastic hospitals. The auto-industry created a very strong medical community. It is not uncommon to have children flown in from other countries for pediatric specialty care here.

My family participated in genetic research back in 1975 at Detroit's children's hospital. My sister was the fourth child to have open heart surgery for patent ductus (please forgive my spelling). Surgery is rarely done for that now as medication usually solves the problem.

I am currently hunting down relatives for more medical background. I am finding a "rare" blood disease that was never diagnosed in my aunt. At lest I am getting a descrption of the symptoms of the disorder.

I don't think EE should just be a gastro specialty. It is gastro symptamatic, but it really starts in the bone marrow.

[Imanistj]

Boy, I keep doing something stupid when I try to reply. Sorry!

It is extremely fortunate that you were able to breast feed. Have you ever had an endoscopy with biopsy? I have had quite a few over the years. The procedure does require conscious sedation or light anesthesia and an IV has to be in place prior to the procedure. Other than that, there is very little stress. Following my most recent biopsy I did have a slight sore throat. I am writing this because I wonder if you fear obtaining a biopsy would be too stressful for your daughter. Have the doctors urged you to have the test? Getting actual tissue to examine microscopically is probably something the doctor would find very informative. My 39 year old son had very odd episodes of vomiting from infancy into his teens. Of course, I was told he and or I had emotional issues causing his vomiting. It took more than 10 years and several doctors in Syracuse and Rochester before the cause was found. He has some malformations of his esophagus and abnormal nerve supply to his esophagus and stomach. He needs to take precautions that patients with severe reflux observe along with a strong oral medication. He no longer has any crazy vomiting episodes. The proof of the abnormal nerve function was discovered by biopsy, the second time he had an endoscopy.

I sincerely hope the doctors soon find an answer to you daughter's problems. It is very hard for a child to be sick often and to feel they are somehow different. At least you have access to high quality medical care.

Nancy

[mommida]

I had an endoscopy with biopsy. Unfortunately I was with a terrible doctor. He was so ignorant he told me it would be fine if I was already on a gluten free diet. Right after the procedure he pronounced me non-celiac, because he knew I was "too young to have Celiac". I don't think he even took any biopsies either, because he knew I didn't have Celiac.

She has had her second scope and we will find out the pathology results soon.

[Imanistj]

I had an endoscopy with biopsy. Unfortunately I was with a terrible doctor. He was so ignorant he told me it would be fine if I was already on a gluten free diet. Right after the procedure he pronounced me non-celiac, because he knew I was "too young to have Celiac". I don't think he even took any biopsies either, because he knew I didn't have Celiac.

She has had her second scope and we will find out the pathology results soon.

Interesting that both you and I had bumbling doctors who got the gluten-free diet and the scoping out of sequence. I really wish I could sue my doctor for the stress and expense he caused me. I am not permanently damaged, except for my anger, and I think my suit would be considered frivolous. I can't afford to lose and have to pay a lawyer. Still I have told my best friend that I wish I had a Voodoo doll representing the doctor so I cold stick pins in it and cast an evil spell.

I hope your daughter's biopsy provides an explanation for all her problems.

Nancy

[mommida]

As much I have daydreamed about eating gluten in front of the doc and having the projectile vomit shower on him. It just makes it harder on you to hold on to the baggage of anger. Lucky that you have the brain cells to stop dealing with this yutz of a doctor.

I had a friend who told me, "you went to bed, you woke up the next morning, you got over it." Wanted to slap him at the time, but it was true. What I was complaining about (and therefore reliving the agony) was over, and I survived.

If everything that happened yesterday (s) were so easy to get over. I wouldn't have anything to complain about!!?

The appointment with her specialist is tomorrow. The pathology findings should be there and if it isn't the answer, at least the door is open to get to the right specialists.

[Imanistj]

As much I have daydreamed about eating gluten in front of the doc and having the projectile vomit shower on him. It just makes it harder on you to hold on to the baggage of anger. Lucky that you have the brain cells to stop dealing with this yutz of a doctor.

I had a friend who told me, "you went to bed, you woke up the next morning, you got over it." Wanted to slap him at the time, but it was true. What I was complaining about (and therefore reliving the agony) was over, and I survived.

If everything that happened yesterday (s) were so easy to get over. I wouldn't have anything to complain about!!?

The appointment with her specialist is tomorrow. The pathology findings should be there and if it isn't the answer, at least the door is open to get to the right specialists.

Good luck! I wish her all the best.

Nancy