AAARRRGGGHHH! I just returned from the visit to the food allergist who told me that I was probably getting better--that I was constipated because my gut just didn't know what to do yet, and the fact that I was gluten free and dairy free and not having diarrhea (never mind still having cramping, spasms and joint pain) showed that I had found what the problem was with my diet. He said, "Well, you obviously have a lactose intolerance." I said, "Hmm...not casein?" He told me that it was rarely casein. When I told him that I had tried Lactaid and continued to have diarrhea, he said, "Well, you didn't tell me that! You probably are sensitive to casein, then."
He knew about Enterolabs and said that he could figure out what panels to order (I felt a surge of hope) but wouldn't because it was a waste of money. "People only think that labs do any good. The lab test comes back telling them they are allergic to every thing and they instantly feel better." Elimination diet is much more "fool proof" and I need to restrict my diet more than I already have, and start eating chicken, green beans, salt and water for the next two weeks at every meal and if that works, I could add something like black pepper in for three days and see if I react.
Sooo I called Enterolabs, they gave me a procedure no. and I called my insurance company to find out if they covered that lab test. They don't cover it at all! Sooo... I called my gastroenterologist's office and talked to my favorite nurse (thank God, something worked today!) and told her that the allergist was a complete waste of my time and money. I would really like to go ahead and pay out-of-pocket for the lab tests, but I need an IgA deficiency blood test done and wondering if the doctor could at least do that for me. Waiting for word back.
I will be out of town Friday thru Tuesday, but you can bet that when I return, I will have an IgA deficiency test and get the testing done at Enterolabs if everything checks out. It turns out that you do not have to pay for shipping if you order panels A & C and that the genetic test that I wanted to do (because of my adult kids and granddaughter) is discounted from $150 to $100. The cost for all three panels is $639.
Food Allergist: A Waste of Time and $
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Food Allergist: A Waste of Time and $
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
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Jane,
I had the same Enterolab tests done that you will have done. I also paid out of pocket. Like your food allergist I wondered whether everyone just tested positive (think I may have even asked that here on the forum at one time) but if you take a look at the results of the various members here you will see that it isn't so. There is a wide variability in results. Although it is certainly possible to figure things out using an elimination diet, what I have found is that having the enterolab results confirm my intolerances helps me stay on the straight and narrow. For me the money spent on the tests was money well spent, which certainly isn't true of a lot of other medical expenses I have had over the years. I hope you have an equally positive experience.
Jean
I had the same Enterolab tests done that you will have done. I also paid out of pocket. Like your food allergist I wondered whether everyone just tested positive (think I may have even asked that here on the forum at one time) but if you take a look at the results of the various members here you will see that it isn't so. There is a wide variability in results. Although it is certainly possible to figure things out using an elimination diet, what I have found is that having the enterolab results confirm my intolerances helps me stay on the straight and narrow. For me the money spent on the tests was money well spent, which certainly isn't true of a lot of other medical expenses I have had over the years. I hope you have an equally positive experience.
Jean
Thank you, Jean. When I have to have an encounter like I had this afternoon with a very arrogant doctor, I begin to question what I am doing and why. This is so good to have some encouragement. It is a lot of money to commit to something like this, but I think that it truly will be worth it. I don't think that so many people would endorse it if it was quackery.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Hi Jane and Jean,
You've probably already noticed by now that a member (Tara) has posted statistics on the tests done to date, in a new topic at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17683
Also, to prove that naysayers such as your allergist are wrong, look at the test results for the member whose username is no-more-muffins. Her biopsy results for MC were negative, and sure enough, so were all of her food test results. How about that?
Incidentally, talk about a pot calling the kettle black . . .
Does anyone else see the irony in a doctor who charges a specialist's fees to give worthless advice, and then arrogantly proclaims the lab service that we have found to be the most helpful for determining food sensitivities to be "a waste of money"? 
That strikes me as funny, sad, and pathetic. What a jerk!
Tex
You've probably already noticed by now that a member (Tara) has posted statistics on the tests done to date, in a new topic at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17683
Also, to prove that naysayers such as your allergist are wrong, look at the test results for the member whose username is no-more-muffins. Her biopsy results for MC were negative, and sure enough, so were all of her food test results. How about that?
Incidentally, talk about a pot calling the kettle black . . .
Does anyone else see the irony in a doctor who charges a specialist's fees to give worthless advice, and then arrogantly proclaims the lab service that we have found to be the most helpful for determining food sensitivities to be "a waste of money"? That strikes me as funny, sad, and pathetic. What a jerk!Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Go for it Jane! Most of us had to pay out of pocket. I will be anxious to see your results :)
I have a cousin who has been having gut issues and she went ahead and took an ALCAT blood test without asking me which test is best. UrrrrG! Now she has a super long list of "maybes". At least with Enterolab results, they are accurate and specific to foods that can cause inflammation. Her food she tested highest for was CELERY! What?
Leah
I have a cousin who has been having gut issues and she went ahead and took an ALCAT blood test without asking me which test is best. UrrrrG! Now she has a super long list of "maybes". At least with Enterolab results, they are accurate and specific to foods that can cause inflammation. Her food she tested highest for was CELERY! What?
Leah
Tex,
I had another name in mind for the food allergist and it was not as kind as "jerk".
I don't think that I told you that this guy felt it necessary to tell me that butter was a dairy product and that they often served in restaurants and I was going to have to be certain of no butter in my meals at restaurants. Well...duh!
I did not know about the posted stats. I will go there posthaste! Leah, tell your cousin she probably does not want to visit Kalamazoo. It used to be known as the "celery capital of the world".
It seems really bad that people think they are doing the very best that they can and it backfires on them after they have spent the money. I feel like I will definitely be on the right track with Enterolab. Thank you, all!
I had another name in mind for the food allergist and it was not as kind as "jerk".
I don't think that I told you that this guy felt it necessary to tell me that butter was a dairy product and that they often served in restaurants and I was going to have to be certain of no butter in my meals at restaurants. Well...duh!I did not know about the posted stats. I will go there posthaste! Leah, tell your cousin she probably does not want to visit Kalamazoo. It used to be known as the "celery capital of the world".
It seems really bad that people think they are doing the very best that they can and it backfires on them after they have spent the money. I feel like I will definitely be on the right track with Enterolab. Thank you, all!Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I also paid for the Entero Lab tests, including genetic test, out of pocket. I was hoping, praying,crossing fingers that I was not gluten intolerant. Turns out I was not only gluten intolerant but possessed both a celiac gene and a gluten intolerance gene as well as soy, egg and casein intolerance. I remember just staring at the lab results in disbelief and relief. Now I had proof that I am not a hypochondriac and there is a wonderful group of people who have my back. If you have a question or issue, ask this group and you will get both answers and encouragement from people with a lot of experience with MC and a host of other autoimmune disorders. You will undoubtedly get more good information here than will ever get from the vast majority of GI doctors.
Welcome and good luck.
Sheila W
Welcome and good luck.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
I guess he felt obligated to prove that he really knew his stuff.Jane wrote:I don't think that I told you that this guy felt it necessary to tell me that butter was a dairy product and that they often served in restaurants and I was going to have to be certain of no butter in my meals at restaurants. Well...duh!
That sounds like something that someone who has read the book, Allergies for Dummies, would say. 
Guys like him sort of justify the old saying about a little education being a bad thing in some cases. Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jane,
I ordered the Enterolab tests before starting any sort of elimination diet. By the time I got my results, I was in the worst MC flare and out sick with what I thought was food poisoning. I tested low-positive for gluten, dairy and soy (teens), but when I cut them out, I was 80% better within DAYS. It was amazing. I also had the gene test and took the results to one of the country's most prominent celiac doctors (Dr. Fasano). He didn't trust the results were accurate and he repeated the gene test with blood this time. Sure enough...the result was exactly the same.
Leah,
I know someone who just had ALCAT testing through their Naturopath. She showed me the report and it was just bizarre. They test for lots of medicinal herbs in addition to foods and chemicals. Her results were all over the map, and she tested very low for gluten. I don't know how she's supposed to eat based on her results. Is the ALCAT similar to MRT? I found many resemblances.
I ordered the Enterolab tests before starting any sort of elimination diet. By the time I got my results, I was in the worst MC flare and out sick with what I thought was food poisoning. I tested low-positive for gluten, dairy and soy (teens), but when I cut them out, I was 80% better within DAYS. It was amazing. I also had the gene test and took the results to one of the country's most prominent celiac doctors (Dr. Fasano). He didn't trust the results were accurate and he repeated the gene test with blood this time. Sure enough...the result was exactly the same.
Leah,
I know someone who just had ALCAT testing through their Naturopath. She showed me the report and it was just bizarre. They test for lots of medicinal herbs in addition to foods and chemicals. Her results were all over the map, and she tested very low for gluten. I don't know how she's supposed to eat based on her results. Is the ALCAT similar to MRT? I found many resemblances.
-
Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Jane
I did the Enterolab testing before asking for the IgA deficiency test. I paid out of pocket and my results only showed two foods I have sensitivity to - oats and gluten - but I know I react to other foods. I have asked my doctor for the IgA deficiency test and she said the only one she knew of was a stool test! I told her no, it is a simple blood test. She is "researching it" and will get back to me. Very frustrating. So I am basically doing the elimination diet and trying one new food per week. Happily I have been able to add in a few veggies without issue, but I had a cream based soup on Saturday and I've been paying for it ever since. Obviously I have issues with dairy/casein. I hope you can finally get this testing done so you know exactly what you can't eat. It will give you a lot of peace of mind. As for your allergist ..... arrogant jerk is an apt description!
I did the Enterolab testing before asking for the IgA deficiency test. I paid out of pocket and my results only showed two foods I have sensitivity to - oats and gluten - but I know I react to other foods. I have asked my doctor for the IgA deficiency test and she said the only one she knew of was a stool test! I told her no, it is a simple blood test. She is "researching it" and will get back to me. Very frustrating. So I am basically doing the elimination diet and trying one new food per week. Happily I have been able to add in a few veggies without issue, but I had a cream based soup on Saturday and I've been paying for it ever since. Obviously I have issues with dairy/casein. I hope you can finally get this testing done so you know exactly what you can't eat. It will give you a lot of peace of mind. As for your allergist ..... arrogant jerk is an apt description!
Leslie
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Diagnosed with Lymphocytic Colitis on December 5, 2012
True friendship is like sound health ... the value is seldom appreciated until it is lost ~ Charles Caleb Colton
~~~~
Diagnosed with Lymphocytic Colitis on December 5, 2012
True friendship is like sound health ... the value is seldom appreciated until it is lost ~ Charles Caleb Colton
Leslie--I don't think it is expecting too much for your doctor to know what IgA is--it is pretty basic to checking for allergic reactions. I would have thought that my internist--at least-- would know about it. Since I had the experience of my gastroenterologist saying that he wanted to read up on Enterolab and then, obviously NOT doing it, I don't really trust a doctor who says s/he "to research it". What is to research? You either understand it or you don't and if you don't, then you have to admit you don't know something to a colleague. Fate worse than death I guess to be a doctor and have to admit that you don't know something!
Zizzle--Good to know your experience with the gene testing. It is so funny that these doctors are only comfortable with what they know. I hope that the duplicate test results taught your doctor something, but I wouldn't hold my breath. I have been vacillating about the gene testing, but I think that it is pretty important.
Okay,my gastroenterologist's nurse just called me back and the Dr. will order the IgA test but it comes with the sprue panel. Now, we all know how a blood test for that will come out. Just $ that my insurance is only too happy to pay out because they KNOW this one. Our health system is soooo goofy. Fortunately, it goes to a lab in Detroit when done, so at least I probably won't have to wait too long for the results as it is in the same state.
Zizzle--Good to know your experience with the gene testing. It is so funny that these doctors are only comfortable with what they know. I hope that the duplicate test results taught your doctor something, but I wouldn't hold my breath. I have been vacillating about the gene testing, but I think that it is pretty important.
Okay,my gastroenterologist's nurse just called me back and the Dr. will order the IgA test but it comes with the sprue panel. Now, we all know how a blood test for that will come out. Just $ that my insurance is only too happy to pay out because they KNOW this one. Our health system is soooo goofy. Fortunately, it goes to a lab in Detroit when done, so at least I probably won't have to wait too long for the results as it is in the same state.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Jane wrote:It is so funny that these doctors are only comfortable with what they know. I hope that the duplicate test results taught your doctor something, but I wouldn't hold my breath.
Yep, when someone has limited knowledge, it severely restricts their abilities and their options. The old saying scientia potentia est (knowledge is power) seems to be widely misunderstood and/or under-appreciated among many of the top medical researchers, apparently due to their closed-minded philosophy.Jane wrote:Just $ that my insurance is only too happy to pay out because they KNOW this one. Our health system is soooo goofy.
I'm glad that your GI doc has finally decided to do what he should have done originally (of course, that would have been too convenient and too economical, and it would have saved too much time.
)Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My husband said when I told him that I was finally allowed to get the IgA test, "Well, everything about this has been soooo slow! It is a good thing that the disease is not a quickly progressing thing or you'd be dead right now!" I said, "Yes, this way I am only half-dead by the time they get around to doing the right thing." At least I am not so dead that I can't see the humor in all of this folly. Maybe I'll be like Zizzle and be over the worst of it by the time I ever get results back from Enterolabs.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Jane- my heart goes out to you and I know EXCACTLY how frustrated you are. Your half-dead comment made me chuckle because in my case too- that was exactly it. I've had thousands of dollars of worthless tests. I was fortunate to have my GI approve the Panel A test which my insurance then covered 100%. He would not do the Panel C which I had to save for and had done a year later. They are both valuable tests. My Panel C tests came back with no reactions which at first I was disappointed and angry but as Tex pointed out, that is some pretty darn good news. I am still disappointed that it didn't reveal that one food (if it were only 1- haha) that I missed and I would be on my way Norman. But it was money well spent because I have peace of mind.
Before I found this forum, I told my doctors that EVERYTHING I ate made me sick. They were quick to dismiss me as a nut since my blood tests always came back within the normal ranges and my numerous celiac blood tests came back negative. Well then, it must certainly be in my head. There may by hypochondriacs out there but when someone is paying for expert help and makes it very clear that they don't enjoy the doctor visits and want their life back, you'd think they would continue to explore different possibilities. Although now, sadly, I realize that I am asking them to help me with something they are not trained to do and they find it frustrating. It's scary to feel like your on your own with figuring it out- that's why the comments offered here are gold.
Good luck and I hope you can get your tests done sooner than later.
Before I found this forum, I told my doctors that EVERYTHING I ate made me sick. They were quick to dismiss me as a nut since my blood tests always came back within the normal ranges and my numerous celiac blood tests came back negative. Well then, it must certainly be in my head.
There may by hypochondriacs out there but when someone is paying for expert help and makes it very clear that they don't enjoy the doctor visits and want their life back, you'd think they would continue to explore different possibilities. Although now, sadly, I realize that I am asking them to help me with something they are not trained to do and they find it frustrating. It's scary to feel like your on your own with figuring it out- that's why the comments offered here are gold.Good luck and I hope you can get your tests done sooner than later.