Very Discouraging Dr Appointment. - Any Reassurance Please

[Guest LauraLatham]

Hi there All

Just got back from a very discouraging doctor appointment. He is my 3rd dr through this whole over a year ordeal, and I regarded him highly and was finally happy I found someone who I thought was finally going to help me. He gave me so much hope a month ago when he gave me the diagnosis of celiac from the biopsy, he said all my villi were flattened down. As I read, that is the most certain way to be diagnosed.

In just a month's time being gluten-free, there have been some definite improvements intestinally. After my absolutely useless appointment today I am so afraid the improvements I've been feeling aren't real and maybe it's just in my head. I know that sounds silly, but I've been through hell this year, and was finally starting to feel better. But this dr was so discouraging this morning, I feel so set back from all the progress I've made.

My blood tests were all normal except for one of the counts was the tiniest bit elevated. And I am a little anemic as well (I'm sure from a year of not being able to eat properly and being so sick). I know from all I've read - the blood tests don't always mean anything. And as far as I know the biopsy is a definite indicator.

He said that since my blood test was just about negative - he wants to redo the endoscopy and colonoscopy. He was really said while he trusts the normal colonoscopy I had over the summer with another doctor, he wants to do another one in case they have missed something. Regardless he wants me back in a month, which will be 2 months gluten-free, to see how I am feeling. Doesn't it take much more than 2 months to really feel better? This whole appointment was completely useless and all it did was upset me.

Maybe he was just having a bad day, not happy about having to be working on a national holiday, who knows, but he wasn't the usually fantastic doctor I remember him to be, and I am so freaking upset and discouraged.

Have any of you had doctors who took the negative blood test results, while having a positive biopsy, not to be Celiac?

Are the blood tests really the end all? Isn't a biopsy a true determination? Anyone else have a positive biopsy and almost negative blood work and still definitely have celiac disease and recover? I just want to be healthy and feel better.

I know I am just another patient to him, but this is my life. My well being and being able to go back to school in a few weeks and returning to having a life as normal as can be was all I was concentrating on.

-very angry and discouraged in NJ

[Lisa]

Laura:

I too have switched several doctors and each one wanted to do their own testing. I think that this is very unnecessary and very expensive.

The whole point is to feel better and you seem to be headed that way. The biopsy is the "gold standard" to test for Celiac Disease. Nothing is better. If your villi are flattened then you have Celiac Disease nothing more need be done except to be 100% gluten free.

I had a positive biopsy and a month after that I had negative blood test after being gluten free.

In my humble opinion, you should not need to return to the doctor and have any more tests done. Eat gluten free and very gradually you will feel better again. It may take as much as a year or so to feel 100%, but it comes.

Good luck and keep in touch.

Lisa B

[Guest nini]

Oh dear... yet another person who has had negative experience with a medical Dr. Ok, to answer your question, The Biopsy was positive therefore you definitely have Celiac. For years the biopsy was the ONLY accepted diagnostic tool. There are some people who don't show elevated antibodies, ESPECIALLY if they didn't have the FULL CELIAC PANEL done. If someone has negative test results either from blood tests or the biopsy, that does NOT mean that they don't have Celiac... The testing isn't perfect. The BEST indicator In my humble opinion, is Positive Dietary Response, which you've said you have.

Biopsy positive = definite Celiac, blood work inconclusive = doesn't matter, Positive Dietary Response = definite Celiac or at the very least Gluten Intolerance which could lead to Celiac if untreated.

Stick to your guns, stick to your gluten-free diet and start enjoying better health! The only reason for follow ups with this Dr. would be if you were NOT improving. Find a reputable General Practitioner that can monitor your anemia, other than that... start getting healthy!

[MACE]

Hi there All

Just got back from a very discouraging doctor appointment. He is my 3rd dr through this whole over a year ordeal, and I regarded him highly and was finally happy I found someone who I thought was finally going to help me. He gave me so much hope a month ago when he gave me the diagnosis of celiac from the biopsy, he said all my villi were flattened down. As I read, that is the most certain way to be diagnosed.

In just a month's time here have been some definite improvements intestinally. After my absolutely useless appointment today I am so afraid the improvements I've been feeling aren't real and maybe it's just in my head. I know that sounds silly, but I've been through hell this year, and was finally starting to feel better. But this dr was so discouraging this morning, I feel so set back from all the progress I've made.

My blood tests were all normal except for one of the counts was the tiniest bit elevated. And I am a little anemic as well (I'm sure from a year of not being able to eat properly and being so sick). I know from all I've read - the blood tests don't always mean anything. And as far as I know the biopsy is a definite indicator.

He said that since my blood test was just about negative - he wants to redo the endoscopy and colonoscopy. He was really said while he trusts the normal colonoscopy I had over the summer with another doctor, he wants to do another one in case they have missed something. Regardless he wants me back in a month, which will be 2 months gluten-free, to see how I am feeling. Doesn't it take much more than 2 months to really feel better? This whole appointment was completely useless and all it did was upset me.

Maybe he was just having a bad day, not happy about having to be working on a national holiday, who knows, but he wasn't the usually fantastic doctor I remember him to be, and I am so freaking upset and discouraged.

Have any of you had doctors who took the negative blood test results, while having a positive biopsy, not to be Celiac?

Are the blood tests really the end all? Isn't a biopsy a true determination? Anyone else have a positive biopsy and almost negative blood work and still definitely have celiac disease and recover? I just want to be healthy and feel better.

I know I am just another patient to him, but this is my life. My well being and being able to go back to school in a few weeks and returning to having a life as normal as can be was all I was concentrating on.

-very angry and discouraged in NJ

HI I DO NOT IF THIS WILL MAKE YOU FEEL ANY BETTER OR NOT BUT MY DOCTOR TOLD ME THAT ABOUT 70% OF PEOPLE WITH IT WILL HAVE NEGATIVE BLOOD WORK. THAT IS WHAT HAPPENED WITH ME. I AM RESPONDING TO THE DIET AND HE SAID THAT WAS GOOD ENOUGH FOR HIM TO GIVE ME THE DX WITH MY PAST HISTORY.

[tarnalberry]

he may not be looking for major major improvement at the two month mark, but many people *do* have significant improvement (certainly measurable) quickly.

[4getgluten]

From what I've read, the positive biopsy is key. It doesn't make sense that your doctor would now doubt those results, especially since you've had a positive response to a gluten-free diet. Blood tests are an indicator, but you could very easily have a false negative result. Perhaps you can ask your doctor for the test results from your biopsy and blood work, and take them to another doctor for a second opinion. I would not subject myself to more tests if I were you. It sounds like you have diagnoses.

Last year I saw four different doctors and had lots of different tests done - none for Celiac - they all came back normal. During the middle of all these appointments and tests, I read about gluten intolerance and tried the diet for myself. I started feeling better within days, but my GI doctor didn't believe me. When he finally agreed to get me a blood test for Celiac, I had already been on a gluten-free diet for six weeks. My blood work came back normal, and my very satisfied doctor told me to go back to eating gluten. I didn't listen to him, and now I feel better than I've felt in years. My primary doctor is very supportive of the diet, and she believes I am sensitive to gluten.

The improvements you are feeling are not in your head. Trust your gut!!

[Jnkmnky]

Isn't this just the "denial phase"? You likely have celiac disease, but are looking for the possibility that you don't. It's a huge change in your life to eliminate all gluten...forever. Don't expect yourself to embrace the diet even if you feel better doing it. You'll want to "check" that dx once or twice even a year from now if you're a stubborn type. I think that's normal. I also think it's normal to embrace the dx and never look back. Just accept your emotions, work with the facts and you'll get from here to waaay over there where you'll feel good about being gluten-free.

[Guest LauraLatham]

Laura:

I too have switched several doctors and each one wanted to do their own testing. I think that this is very unnecessary and very expensive.

The whole point is to feel better and you seem to be headed that way. The biopsy is the "gold standard" to test for Celiac Disease. Nothing is better. If your villi are flattened then you have Celiac Disease nothing more need be done except to be 100% gluten free.

I had a positive biopsy and a month after that I had negative blood test after being gluten free.

In my humble opinion, you should not need to return to the doctor and have any more tests done. Eat gluten free and very gradually you will feel better again. It may take as much as a year or so to feel 100%, but it comes.

Good luck and keep in touch.

Lisa B

I can't thank you enough for your positive words. I've delt with so many doctors like this, where I coudn't trust them with everything, I had to do what's best for me, and here's another one of them.

Thanks again, your words made me feel much better.

Isn't this just the "denial phase"? You likely have celiac disease, but are looking for the possibility that you don't. It's a huge change in your life to eliminate all gluten...forever. Don't expect yourself to embrace the diet even if you feel better doing it. You'll want to "check" that dx once or twice even a year from now if you're a stubborn type. I think that's normal. I also think it's normal to embrace the dx and never look back. Just accept your emotions, work with the facts and you'll get from here to waaay over there where you'll feel good about being gluten-free.

Hi I think you read my post wrong. My GI is the one who thinks that because of a mostly negative blood test, that I might not really have celiac disease and wants to do more unnecessary testing. Not that I want to have celiac disease, but I've already tested positive by biopsy and are already a month into it and noticing improvements, and extremely glad about it and feeling better. I was asking if you guys had ever heard of a GI feeling this way, taking the blood work results over a biopsy result.

[Canadian Karen]

Laura, I also agree with the other posters. If your villi are flattened, it's celiac, no two ways about it.

Maybe your doctor just wants to schedule some procedures to pay for his Christmas bills that are going to be coming in....... Ya never know!

I would not put myself though all that crap again. Go gluten-free, and once you have the positive dietary response along with the biopsy, you will have your answer definitively..... Bloodwork is really quite unreliable.....

Hugs.

Karen

[Guest LauraLatham]

Oh dear... yet another person who has had negative experience with a medical Dr. Ok, to answer your question, The Biopsy was positive therefore you definitely have Celiac. For years the biopsy was the ONLY accepted diagnostic tool. There are some people who don't show elevated antibodies, ESPECIALLY if they didn't have the FULL CELIAC PANEL done. If someone has negative test results either from blood tests or the biopsy, that does NOT mean that they don't have Celiac... The testing isn't perfect. The BEST indicator In my humble opinion, is Positive Dietary Response, which you've said you have.

Biopsy positive = definite Celiac, blood work inconclusive = doesn't matter, Positive Dietary Response = definite Celiac or at the very least Gluten Intolerance which could lead to Celiac if untreated.

Stick to your guns, stick to your gluten-free diet and start enjoying better health! The only reason for follow ups with this Dr. would be if you were NOT improving. Find a reputable General Practitioner that can monitor your anemia, other than that... start getting healthy!

Thank you so much for your knowledge and support! While as helpful as this doctor had been, it is extremely apparent that we know much more than he does about this disease. I think I will be looking into a Celiac specialist very soon. Thanks again.

[shayesmom]

My blood tests were all normal except for one of the counts was the tiniest bit elevated. And I am a little anemic as well (I'm sure from a year of not being able to eat properly and being so sick). I know from all I've read - the blood tests don't always mean anything. And as far as I know the biopsy is a definite indicator.

He said that since my blood test was just about negative - he wants to redo the endoscopy and colonoscopy. He was really said while he trusts the normal colonoscopy I had over the summer with another doctor, he wants to do another one in case they have missed something. Regardless he wants me back in a month, which will be 2 months gluten-free, to see how I am feeling. Doesn't it take much more than 2 months to really feel better? This whole appointment was completely useless and all it did was upset me.

Maybe he was just having a bad day, not happy about having to be working on a national holiday, who knows, but he wasn't the usually fantastic doctor I remember him to be, and I am so freaking upset and discouraged.

I know I am just another patient to him, but this is my life. My well being and being able to go back to school in a few weeks and returning to having a life as normal as can be was all I was concentrating on.

-very angry and discouraged in NJ

The "scientific" rationale behind this is that they do the biopsy to prove there is Celiac's and then do another one to confirm that there is healing (thereby confirming a diagnosis you've already been given). Personally, I think that this is unnecessary. You don't have to undergo another biopsy to prove you are better when you KNOW that you are already feeling better. You have a choice as to whether or not you undergo another biopsy. You don't have to put yourself through another round of tests to satisfy his scientific curiosity.

As for the anemia, have you given up dairy as well as glutens? Dairy is a MAJOR cause behind most cases of iron-deficiency anemia as dairy blocks the uptake of iron in the body. The elimination of dairy may be one of the key factors that will further push you down the road to better health.

"Sensitivity to milk can cause blood to slowly and steadily seep into the intestines. This lowers the blood protein level, which can lead to anemia, even though the amount of blood lost each day is too small to see. Dr. Oski points out that “it is estimated that half the iron deficiency in the United States is primarily a result of this form of cow’s milk induced gastrointestinal bleeding.” In addition, milk provides very little iron (about one-tenth of a milligram per eight-ounce serving) and it blocks the absorption of iron. Children that are filling up on a lot of milk and dairy products may not be getting enough iron-rich foods to begin with, but when they do get iron, the excess milk may be hindering the absorption of the iron."

I think that this holds true for most adults as well. If it were me, I would try this before agreeing to more "tests" that are just repeats of what has already been established. This is YOUR life and you have a right to decide how you want to proceed. It is okay to tell the doctor that you aren't interested in another biopsy as long as you maintain diet and continue to improve.

[jerseyangel]

Shaysmom--You're so right about dairy. It's truly sad to think of the dairy industry hoodwinking so many into thinking that without it your bones would break apart and you would find it much harder to lose weight. Growing up, I didn't like milk and luckily my parents didn't make me drink it. As an adult, I used to eat yogurt, cheese and ice cream. I never pushed milk on my sons, but never told them to avoid it either. I have been off dairy for almost 2 years now--even before I was Dx. I can't believe the change in how I look. My face lost that puffy, bloated look that I thought was normal for me. I've been looking for any research that might show how much calcium is needed when a person does not consume dairy products. I have read that the need is lower when the source is other than dairy (dark green leafy veggies, other foods and supplements) for the reasons you talked about in your post.

[Guest nini]

Thank you so much for your knowledge and support! While as helpful as this doctor had been, it is extremely apparent that we know much more than he does about this disease. I think I will be looking into a Celiac specialist very soon. Thanks again.

you are welcome... I have only been back to see the Dr. that dx'ed me twice, once to go over the test results and to see how I was progressing on the diet, and the second time for the 1 year follow up. He told me that unless I didn't keep improving, HE DIDN'T need to see me. He said that my general practitioner was sufficient to monitor my general health improvements, and that only if I developed other gastrointestinal complications, would I need to see him again. He felt that the improvement that I was showing on the diet as well as my positive blood test results, were sufficient to dx me with Celiac and that any further testing is unnecessary. I tend to share his belief, that if one or both of the tests were positive AND you show improvement on the diet, you do not need to continue with a "specialist"... find a general practitioner that accepts the dx of Celiac and is knowledgeable, or at least willing to listen and learn, and can monitor your general health. Other than that, you really don't need any medical intervention with this. The diet is something that even nutritionists in specialists offices don't know enough about. The people who know about the diet are those of us who have been LIVING it for a year or more.

I think the first year is a steep learning curve, and we all make mistakes that first year, but after the first year, MOST get a handle on it and can steer you in the right direction. Keep in mind that some people are sensitive to other foods besides just gluten. Some celiacs are lactose intolerant during the healing process and after healing, can safely enjoy dairy again. Others can't ever enjoy dairy. Some are reactive to soy, some to antibiotics, nitrites and nitrates and hormones in meats and dairy, some to certain plants like nightshades. If you don't get 100% better on the gluten free diet, you may want to keep a food diary to look for other food intolerances, I'm starting to notice a pattern with Soy for me. . I also can't have meat with hormones or antibiotics... lunchmeats with nitrites or nitrates... Gluten is a big piece of the puzzle, but it may not be the only piece. In my opinion though, you don't need to pay more medical specialists to figure this part out. Your best resource is other Celiacs (like this board!) or a local support group.

A general practitioner is your best bet for montioring your health needs. Until you get the anemia under control, and any other issues that crop up. But don't spend money on specialists that you don't need to. Unless you have an insurance policy that covers 100% and you don't even have a co pay! (J/K) I really don't think you need to see a specialist... I think you can get a handle on this sufficiently enough by following up with your GP and using this board as a resource.

I'm not quite awake yet, so forgive me if I rambled...