Bad Experience W/ Doctor= Please Give Me Some Guidance If You Can!

[jessika393]

I went to an allergy doctor to be tested for additional onset food allergies. First I call my gastro doctor and he says he doesn't know a thing about this blood test to call an allergy doctor b/c he can't even think of one to recommend. So I call around and find one that tests for food allergies. When I actually called before I went I specifically asked if they could do a food allergy blood test called IgG Elisa and the nurse told me yes.

I was prompted to do this for two MAJOR reasons. 1st- I've been gluten free for about 10 months and when I eat, I still get bloated EVERY SINGLE TIME. I feel ill and lathargic after every meal, even when eating the right things. Certain foods seem to bother me more which made me wonder if I have 2ndary onset food allergies. 2nd Reason- After reading the book, Dangerous Grains, they continued to stress being tested for additional food allergies through the IgG Elisa blood test.

So I go to the doctor, First he says that he would like to do the panel of 110 allergies down my back. I inquire at this point to see if that's necessary b/c I really just want this blood test. So next I ask a million questions, specifically expressing my concerns about bothering to prick my back, how the blood test I want is different etc. He gives me the run around, makes me more confused, tells me that the blood test is just one theory and that there are lots of theories and eventually says they will all show the same things. So I believe him, b/c he's the doctor but am still a bit weary that he doesn't really understand what I need/want as it relates to celiac and allergy testing. After waiting an hour to be tested, they do the test and sure enough- nothing comes up- NOT EVEN A WHEAT allergy. So I'm so upset and ASK wouldn't I show an allergy to wheat if I already have celiiac disease confirmed through a biopsy? He doesn't know he said. Then when I pushed about the IgG Elisa blood test, he said he didn't even know what labs evaluate that type of blood test, how to go about it, and that it would be expensive. He ended saying he'd call me and that hasn't happened yet! I'm so sad and upset.

So if anyone can answer just a few questions about this or tell me about this blood test vs. regular food allergy testing on the back I'd really, really appreciate it b/c I'm becoming desperate. And if anyone has a good dr. in Charlotte that understands Celiac, can you make a recommendation?

1. Is IgG Elisa food allergy testing diiferent than testing allergies down the back w/ pricks.

2. Who gives this IgG Elisa Test?

3. Is it possible to test negative for wheat allergies when they prick your back, EVEN if you already have celiac?

Thanks for any help and support, b/c this has made me so sad.

[tarnalberry]

I don't know what that doc was doing, other than trying to take a lot of money for an expensive skin test and assuming you didn't know what you were talking about...

The skin test looks for rapid onset, IgE mediated allergies. Histamine related allergies. (Histamine is what causes the swelling and redness in the area of something you're allergic to.) It will not detect IgG or IgA allergies (delayed reactions). Celiac is an IgG based autoimmune reaction, so will not show up on an IgE test. If you're going to go back to him, I'd encourage you to do a LOT of reading and educate yourself on the various things so you can talk to him more closely as a peer and catch him with these "mistakes" (which may or may not have been actual mistakes, he may have thought he was working with a difficult patient). Or find another doctor - but take some time to research one who is familiar with the procedure you're looking for.

[danikali]

Hi,

I was blood tested for many many many allergies, and nothing at all came up. But, I am also still having problems even though I am not eating gluten. I have read a million times over and over that FOOD INTOLERANCES and ALLERGIES are different and that you cannot detect a FOOD INTOLERANCE through a blood test. That is why they have the elimination diets. An actual allergy will give you symptoms of a rash, or hives, or swelling of parts of your body, or vomiting, sinus infections, etc. D and C, a bloated stomach and feeling tired are more FOOD INTOLERANCES and cannot be tested with IgE blood tests. It's proof because for example, the wheat allergy did not come up positive, but you DO have Celiac disease. So just like gluten and Celiac Disease have nothing to do with allergies, neither does the other things that you are eating. It's from your leaky gut caused by Celiac.

Starting today, I am finally making a food journal and starting my elimination diet. This is what you need to do. This is the only way you will get accurate results of what actually bothers you. You have to pick COMPLETELY SAFE FOODS THAT YOU ARE 100% SURE OF. For me, it's rice, apples, bananas, some veggetables and fish. Then you only eat that for about 5-7 days until you are feeling somewhat normal. After that, one at a time, add a new food in for 3 days straight and record how you feel. After that, you will know if you can keep that food in your diet or you have to get rid of it for now. Then for another 4 days, KEEP THE DIET YOU HAVE CREATED AS YOUR SAFE ZONE, along with the new food if you can keep it. And after 4 days, add in another food.

I know it's tedioius and that's why I have been so lazy about it, but I know for me, I can't take this anymore. I need to do this for myself or I will never get anywhere. Maybe you should try this. Your IgE tests that you just took could actually be accurate.

Good luck and seriously, try the elimination diet!

[Rachel--24]

Jessika,

The ELISA food intolerance test can be purchased from York labs. Many people on this forum have used them for testing. You dont need a doctor for the test. I had the test run from Great Smokies lab (requires a doctor). It is expensive. I paid $350. I'm not sure what York charges. A regular doctor or allergist doesnt test for IgG delayed reaction intolerances. That has been my experience....they only test IgE "true" allergies via a skin test or a blood test. My allergist did not do skin tests for food...only bloodtests....but again...only IgE. I have NO IgE allergies to food, pollens, etc.

I agree with Tarnalberry...read up a bit before seeing the doc. I learned this the hard way....they dont know eveything...and some know nothing.

[Claire]

Why am I not surprised at the initial post in this topic? Because I have been there - many, many times.

Some doctors are absolute fools! You seem to have found the fool of all fools. Of course they are wealthy fools.

I am sure most everything has already been said here. Celiac is not an allergy. Back scratch tests are for allergies. I was told I was the least allergic person that they had ever tested. Yet I have food intolerances to almost everything.

If you have the Food Intolerance test you will probably see some things on your reactive list that you will find doubtful. These tests do produce false positives. I have been told that York Labs has a good reputation for fewer than average false positives.

The doubtsfuls are the ones you want to put to a challenge. Delete for at least two weeks, then add the food back in for a week. If no bad reactions - keep it and go on to another. When you hit a bad reaction to a food, delete it from your diet and wait up to two weeks before trying another.

I think food intolerances are like autoimmune diseases - nobody ever has just one! Claire

[Ursa Major]

Another way to find out about intolerances (and it won't detect all of them either, obviously, because it didn't even say that I am intolerant to wheat, never mind a lot of other things) is with a Vega machine. Naturopathic doctors might have them (not all of them do, but German ones are more likely to have them, since it's a German invention). I got tested when visiting my daughter in Ottawa four years ago.

It showed that I am intolerant to the nightshade family, the combination of fruit and grain (I'd NEVER have figured this out on an elimination diet by myself, how would you?), coffee, chocolate (I finally had to stop ignoring that one), MSG. I immediately knew it was true, because I had the evidence for all of those. That very week (before the test) I had two bad reactions to something, causing me to have hives everywhere, and realized after being tested that every time I had grains with fruit (once an apple sauce cake, and the other time pineapple chicken with rice, which won't matter anymore now, since I had to cut out all grains anyway) I reacted. But I didn't have a clue what it was, until I was told of that combination.

Often there are intolerances of food combinations, which you couldn't possibly figure out by yourself. One of my daughters is intolerant to the combinations of meat and tomatoes, and meat and potatoes. My granddaughter cannot tolerate the combination of egg and grain, and my oldest daughter can't have egg and dairy together.

So, elimination diets are a good idea, but it isn't possible to figure out combinations with them. The Vega machine test will.

[CeliacMe]

It may be possible, they are just looking for a reaction in your skin when they poke you. The blood test can be done by your regular doctor. They are testing for the antibody.

Does anybody know what a normal level is for that test? What's low what's high? Is normal a 0??? Mine was a 20, is that really high?

  jessika393 said:

I went to an allergy doctor to be tested for additional onset food allergies. First I call my gastro doctor and he says he doesn't know a thing about this blood test to call an allergy doctor b/c he can't even think of one to recommend. So I call around and find one that tests for food allergies. When I actually called before I went I specifically asked if they could do a food allergy blood test called IgG Elisa and the nurse told me yes.

I was prompted to do this for two MAJOR reasons. 1st- I've been gluten free for about 10 months and when I eat, I still get bloated EVERY SINGLE TIME. I feel ill and lathargic after every meal, even when eating the right things. Certain foods seem to bother me more which made me wonder if I have 2ndary onset food allergies. 2nd Reason- After reading the book, Dangerous Grains, they continued to stress being tested for additional food allergies through the IgG Elisa blood test.

So I go to the doctor, First he says that he would like to do the panel of 110 allergies down my back. I inquire at this point to see if that's necessary b/c I really just want this blood test. So next I ask a million questions, specifically expressing my concerns about bothering to prick my back, how the blood test I want is different etc. He gives me the run around, makes me more confused, tells me that the blood test is just one theory and that there are lots of theories and eventually says they will all show the same things. So I believe him, b/c he's the doctor but am still a bit weary that he doesn't really understand what I need/want as it relates to celiac and allergy testing. After waiting an hour to be tested, they do the test and sure enough- nothing comes up- NOT EVEN A WHEAT allergy. So I'm so upset and ASK wouldn't I show an allergy to wheat if I already have celiiac disease confirmed through a biopsy? He doesn't know he said. Then when I pushed about the IgG Elisa blood test, he said he didn't even know what labs evaluate that type of blood test, how to go about it, and that it would be expensive. He ended saying he'd call me and that hasn't happened yet! I'm so sad and upset.

So if anyone can answer just a few questions about this or tell me about this blood test vs. regular food allergy testing on the back I'd really, really appreciate it b/c I'm becoming desperate. And if anyone has a good dr. in Charlotte that understands Celiac, can you make a recommendation?

1. Is IgG Elisa food allergy testing diiferent than testing allergies down the back w/ pricks.

2. Who gives this IgG Elisa Test?

3. Is it possible to test negative for wheat allergies when they prick your back, EVEN if you already have celiac?

Thanks for any help and support, b/c this has made me so sad.

I always have a bad reaction to MSG, is that a gluten too? After awhile I just assumed it is gluten and starting being more vigilant about not eating it.

  Ursula said:

Another way to find out about intolerances (and it won't detect all of them either, obviously, because it didn't even say that I am intolerant to wheat, never mind a lot of other things) is with a Vega machine. Naturopathic doctors might have them (not all of them do, but German ones are more likely to have them, since it's a German invention). I got tested when visiting my daughter in Ottawa four years ago.

It showed that I am intolerant to the nightshade family, the combination of fruit and grain (I'd NEVER have figured this out on an elimination diet by myself, how would you?), coffee, chocolate (I finally had to stop ignoring that one), MSG. I immediately knew it was true, because I had the evidence for all of those. That very week (before the test) I had two bad reactions to something, causing me to have hives everywhere, and realized after being tested that every time I had grains with fruit (once an apple sauce cake, and the other time pineapple chicken with rice, which won't matter anymore now, since I had to cut out all grains anyway) I reacted. But I didn't have a clue what it was, until I was told of that combination.

Often there are intolerances of food combinations, which you couldn't possibly figure out by yourself. One of my daughters is intolerant to the combinations of meat and tomatoes, and meat and potatoes. My granddaughter cannot tolerate the combination of egg and grain, and my oldest daughter can't have egg and dairy together.

So, elimination diets are a good idea, but it isn't possible to figure out combinations with them. The Vega machine test will.

[tiredofdoctors]

I'm concerned that the "allergy" MD didn't explore your condition further. Usually, they specialize in "Allergy and Immunology", and given that Celiac is an autoimmune disease, they should have been right on it. I would find out if this MD specializes in "Allergy & Immunology", and if so, I would report him/her to the medical board in your state. There is no justifiable reason that an immunologist would not know about the bloodwork which can be done. I would also suggest finding either another immunologist, or as the others have stated, a naturopath, because I certainly think you were shortchanged, at best, during this past visit. . . .Lynne