What Tests Are Reliable And What Tests Should I Have

[clnewberry1]

I have had IgE skin testing - not allergic to one thing.

I had IgG testing (ELSIA testing) it came back positive for - wheat, rye, mushrooms, milk, brewers and bakers yeast.

The allergist said this IgG testing is not reliable and there is not science to back it up. The lab that I paid $450 to run the test has been doing this for 25 years. I really do not know what to do.

I was tested for Celiac antibodies - negative, I was biopsied in 2004 - negative.

I read about an IgA stool test for gluten, eggs, soy, milk. Is this test reliable?

My son is having some issues that I really think are food related. Exema, a bad case of dermititis on his face, diaper rashes, diareha. He has never had a normal stool his entire life. The pediatrician said that it's Toddlers diahreaha and not to worry. He is underweight for his age although there is a dispute between the peds office and the allergist about whether he is 5% or 25% percentile. Anyway I took him to get IgE testing and everything was negative. I asked the allergist again about IgG vs, IgA, and he was very vauge and said if the scientist at John Hopkins are doing this then its not real science.

I know I don't feel good most of the time and I don't know what to do. I have been wheat/rye free for 20 days. I still don't feel better although no diahreha. I am supposed to get a colonoscopy and and upper endoscopy in a month. I do not want to subject my son to this if the IgG test or IgA tests are reliable.

Any information would be helpful.

Thanks!!

Crystal

[RiceGuy]

A number of members here seem to like Open Original Shared Link. They claim that their tests are more sensitive than the standard tests being used elsewhere. I've not tried them, but I'm sure others who have can tell you their experiences.

[ang1e0251]

You should not be wheat/rye free if you are planning an endoscopy. You can skew the results. You need to be eating plenty of gluten leading up to test for an accurate result. I'm no expert on the blood tests. Others here can give you advice on those. All I do know is that young children are very hard to diagnose from blood tests due to the large number of false negatives. Can your child wait until your test results are in? If you are positive, it would be a good move for the child to have the approprite tests. Maybe you can ask your gastro this in advance and have the appointment set so your child won't have to wait months. The appointment could be canceled if you choose to.

[clnewberry1]

I have had a endoscopy on gluten and tested negative to the biopsy in 2004. I had an IgG test for the wheat/Rye that came back positive. The endoscopy and colonoscopy are looking at other things. So I am not so much concerned for a positive on that test.

I am concerned which test to get my son - an IgG or IgA? He is not on a gluten free diet at all. His doctor does not believe that his problems are food related. The diagnosis, dermatitis, exzema, toddlers diareha. So as far as he is concerned no more testing other than the IgE skin test is necessary. I am willing to pay out of pocked for the IgG or IgA but I am asking which one is more reliable?

Thanks,

Crystal

[Mother of Jibril]

Eczema is definitely a sign of allergies and/or intolerances. If my son has even a tiny bit of casein or corn he gets eczema on his face (his legs too if it's bad enough).

Some people have had success with IgG testing (the kind you did), but the results can change depending on what kinds of foods you're eating on a regular basis as well as the health of your immune system and intestines. IgG allergies are not necessarily life-long (although they can be). The best way to diagnose them is by doing an elimination diet and then challenging with that food to see if the symptoms come back.

This kind of testing is free I wouldn't worry too much about what your pediatrician thinks. Mine was surprised that dietary changes could have any effect.

[clnewberry1]

So are IgA intolerances life long?

I have thought long and hard about an elmination diet which like you said would be free. I tried soy when he was a baby and got a bad reaction and I am very reluctant to do an elimination diet when he is only in the 3rd percentile for weight. He is my tiny kid. He is such a picky eater as it is that most of his favorite foods will be eliminated. I am afraid that he will loose more weight and be worse off and then it wasn't gluten or dairy that caused it.

My doctor told me that I would need to remove all gluten/dairy for 3 months but the allergist said 7-10 days. Since he is so little unless there is an obvious reaction - exzema, diareha I won't really know if he had a reaction.

Anyway I am still on the fence, we have taken him off dairy and we are watching to see what happens. So far he dermatitis is still going strong.

Thanks,

Crystal

[Mother of Jibril]

There's some debate over whether you can outgrow allergies. Severe IgE allergies (the kind that can be fatal) are considered to be life-long. Celiac disease is a life-long intolerance to gluten. In some cases people do improve and are able to tolerate foods again. You just have to wait and see.

I'm sure it is scary, thinking about taking your son's favorite foods out of his diet. However, this is a common situation... gluten is very addictive! In a few days he'll start to be more interested in other foods. The best thing you could do is get him eating nutrious, high-calorie foods like coconut milk, nut butter, avocado, seeds, meat, dried fruits, almond milk, etc... The diarrhea and malabsorption are preventing his body from digesting the calories you're currently giving him It's very possible that you will start to see improvements within a week, although if gluten really is a problem it will take a little longer for him to heal completely. Some kids with celiac disease get really hungry and start growing quickly (making up for lost time!) in the first few months on a gluten-free diet.

A gluten-free, dairy-free diet would be the best thing... dairy proteins are difficult to digest. Dairy is also one of the most common allergens. Plus... if you know that soy is a problem, I would keep that out of his diet too. Don't substitute soy products for dairy products. After a few months you could try those foods again (one food at a time) to see if he tolerates them.

This is really a great place to learn about food intolerances and get ideas I'm so glad that you listened to your instincts instead of the pediatrician!

[ang1e0251]

An elimination diet is a good indicator. My friend's grandson is a mess of rashes and has been for some time. After traveling from dr to dr, they finally got to a gatrso with a brain. First his child has eczema. Dr told them eggs were the #1 allergen for eczema. They have a family history, anecdotal not dx's, of celiac. He has the mother trying an elimination diet for various foods one at a time starting with eggs. It's two weeks elimination then reintroduce and note reaction. She has to keep a complete diary of foods and reactions. When they do get some of his skin problems reduced, then he will undergo further testing. Dr said when child is so inflamed it can interfere with the test results.

I don't know about your child. My friend's grandson has various different breakouts so elimination will tell them a lot. You can easily do this with your child. I would start with dairy and gluten and keep that diary. A diary gives you more credibility with a dr. They respect the written word and the trouble you are going to to help your child. The tests may not reveal much on a young child. That's of course up to you as the parent. You should follow your parental instincts and ask for what you need; test, new tests, refferrals, second opinions, whatever.

[clnewberry1]

I talked to the pediatrician again today about IgG testing and IgA testing for food intolerances. (I a mainly concerned about soy, dairy, wheat, the big ones - if he has an reaction to tomatoes I feel that I would catch that because it's not in practically everything we eat)

Anyway what he told was that testing is often difficult because you can have an IgG or IgA reaction on the lab, but in real life not have any reaction to those foods. You could also come back negative on those tests and have a reaction to the the suspected foods. This is why an elimination is the best. So ok I am going to do an elimination first of dairy.

So let me ask this - how long does the dairy need to be out of his system before I will see a change or no change before I go to the next food? If I take out milk then his eczema and diareha dosen't clear up then I add it back in and take out something else how much time needs to pass? I have been told two different things 7-10 days by the allergist and 3 months by another doctor.

Thanks for all of the replies - this has been so helpful.

Crystal

[RiceGuy]

If it were me, I'd remove both dairy and gluten from the diet at the same time. One good reason is that many have similar reactions to both, so if either one remains in the diet, there might not be enough change in symptoms to really know. If that happens, you might think neither is the problem, when it could easily be both.

As for how long to keep the suspect food(s) out to see a change, you know your own child best. I know for myself, it takes a few weeks to be sure. Sometimes I reintroduce once, twice, or more, especially when symptoms are subtle, or when other things might have interfered with the challenge.

One sign you may be able to catch, is nail health. If the nails grow better/worse for a short time, it can often be seen in the way the nail appears in that spot. As the nails grow, the differentiated spot gets closer to the end. Some aspects of nail health include thickness, smoothness, color, rigidity, and of course the half-moons (though this tends to take more time to change noticeably).

I think I'd also watch for changes in sleep patterns, wakefulness (especially after meals), mood, disposition, appetite, thirst, alertness, etc. I'm sure you get the idea.

Other subtle things I've noticed are the skin on my knees and elbows, the appearance of my tongue, and how long it takes for my eyes to adjust to light.

[Worriedtodeath]

HEre's what we had to do.

Background - my 12 month old stopped growing and had continually worsening diaherra. I had a ped with a clue about Celiac but surrounded by specialists without a clue. Since we used an allergist with the oldest, I went that route first.

First thing the allergist wanted after initial IGE testing was to get back to a normal stool. Took almost 1 month of only fruit ( apple/ banana), veggies( potato, green bean, green peas, corn) , and plain meat to do this. I kept a food diary that listed the day, the amount eaten ( and time), how prepared ( cut food labels and pasted those in there if I had any), any bms and how they looked - brown, light brown, scattered, liquid, together, etc and at what time she had any. I also recorded mood, temp, colds, sneezes, anything I noticed as different or not there the day before. Also kept comments on how she looked - condition of her hair, skin, nails, length of activity/sleep etc.. I got really anal and color coded the whole thing as the months went by and the stupidity of all the specialists got deeper. Then we went another month of regular solid stool before starting the food trials. HE said the typical culprits were dairy, eggs, wheat. So that is where we started. And he said a month was necessary. His opinion was allergy would be within an hour or so of eating, intolerance within 3 or 4 days max, and the realm of "other problems like Celiac" after that time period.

We went eggs first. I was told for an accurate trial I had to fix and eat the same thing every day for the month. No switching products, styles, seasonings or else the results might be skewed. We went scrambled eggs lightly salted with a dash of pepper every day for a month. No reaction. Then brought in dairy in the form of ice cream. Ice cream everyday for a month (YEA We all rejoiced over that) Then, we introduced sandwich bread The same type of bread either eaten as sandwich or as toast. The 2nd almost 3 week she began to have loose stools. The allergist said go to the ped gi. The ped had all ready arranged that appointment because she was convinced it was Celiac, so we didn't have to go to long before seeing him. I continued the wheat trial with the food diary until the biopsy and then kept up with the food diary for another 4 or 5 months.

So that's how we did it. Despite negative blood and biopsy, I had proven that wheat caused a severe issue and that it had to be removed along with oats, rye, barley. The food diary can really reveal some things. It showed the day she developed her lactase deficiency - Dec 14,2007. It showed the improvement off of wheat and the fast downhill slide on wheat. The more detailed the more you can track.

Food testing unless it is IGE can be really useless unless you are dealing with a ton of things. And then once the gut is healed, much can be brought back into the diet -just avoiding the things that caused the damage. A detailed food diary and very careful intro of food can tell you a lot more. Like the fact that the only growth she did in a year was during the months she only ate fruit, veggies, meat,eggs, and dairy. And is pretty hard evidence in face of very negative tests. I still keep the diary whenever we reintro a food like cheese or ice cream or anything I suspect might be a trouble food.

HTH

Stacie

[clydeshannon5]

Get the book "The Gluten Connection" it will explain all of the IgA etc, etc. connection and why so many testing is negative. It will tell you exactly what test to do and where to send it. It has been a life saveer for me. You really have to be your own diagnostic doctor to a certain extent. The general medical world is really under educated about gluten. we spent thousands of dollars and way too much time trying to find out what was wrong. Not one doctor even mentioned gluten. the GI doc said it was impossible to have celiac because only old people get that, and he didn't see anything in the scope, and the biopsy came back negative. Biopsies (which they say are the only 100% way to diagnose) are not that accurate. they routinely come back with false negatives. your son and you completely sound like it is celiac. Get the book, it is the best place to start that i have found.

shannon

I have had IgE skin testing - not allergic to one thing.

I had IgG testing (ELSIA testing) it came back positive for - wheat, rye, mushrooms, milk, brewers and bakers yeast.

The allergist said this IgG testing is not reliable and there is not science to back it up. The lab that I paid $450 to run the test has been doing this for 25 years. I really do not know what to do.

I was tested for Celiac antibodies - negative, I was biopsied in 2004 - negative.

I read about an IgA stool test for gluten, eggs, soy, milk. Is this test reliable?

My son is having some issues that I really think are food related. Exema, a bad case of dermititis on his face, diaper rashes, diareha. He has never had a normal stool his entire life. The pediatrician said that it's Toddlers diahreaha and not to worry. He is underweight for his age although there is a dispute between the peds office and the allergist about whether he is 5% or 25% percentile. Anyway I took him to get IgE testing and everything was negative. I asked the allergist again about IgG vs, IgA, and he was very vauge and said if the scientist at John Hopkins are doing this then its not real science.

I know I don't feel good most of the time and I don't know what to do. I have been wheat/rye free for 20 days. I still don't feel better although no diahreha. I am supposed to get a colonoscopy and and upper endoscopy in a month. I do not want to subject my son to this if the IgG test or IgA tests are reliable.

Any information would be helpful.

Thanks!!

Crystal

[clydeshannon5]

I agree with RICEGUY, eliminate both dairy and gluten. In fact do the SCD eating , it is really easy, eat fruits, veggies and meat. It explains this in the book, THE GLUTEN CONNECTION.

hope you find some good answers to your questions. We found the allergists not to be much help.

[nora-n]

Crystal , how old is your son?

Usually , for celiac , we get the tissue transglutaminase test, IgA version, plus a total IgA at least.

It is designed (=cutoff values are set) to go positive with severe damage to the villi in the small intestine. It will not pick up all celiacs, maybe 50-90% at best.

There is also the older antigliadin test, which may be positive before the villi damage is severe. IgA version as well.

There is also the Endomysial antibody test, which came after the antigliadin test but before the tissue transglutaminase test. IgA only.

Both the ttg and antigliadin tests have IgG versions, but here in europe they only run them if the total IgA is low, and about 10% of the population have that. even if total IgA is within range, but low, it looks like the IgA versions of those tests do not work.

Now some labs have panels of IgG and maybe combined IgG and IgM antibody tests for lots of foods. Usually people pay for them private. One has to do some searches on the forums for wether it helped or not to avoid those foods. I had one of the IgG food panels done, and I have high yeast antibodies, so I bake bread without yeast and gluten.

If your child is under the age of about 3, blood tests for celiac are not accurate since small children do not make enough antibodies to show up in those celiac tests. maybe, maybe not. maybe the cutoffs should be lower.

One thing is certain:

going gluten-free to see how the child reacts before doing any testing is not advisable, as it often makes diagnosis impossible.

Happended to me too. (I knew about this, and had the celiac blood tests done before going low-carb. But it became apparent that gluten was the culprit after all. Now I have this DH blister behind my ear from glutening. No diagnosis.)

nora

[GFLady]

I did an elmination diet as well, and it did really work. However I think 7-10 days are not enough for the things to clear up. I started to feel better after a week, and then it took me at least 3 months to see my eczema completely go away. I didn`t eat sugar, (not even fruits for the first two weeks, then slowly ate some), no legumes, no gluten and no dairy and nothing moldy or fermented, like vinegar. I did eat soy however, that doesn`t bother me. This diet was very helpful. It is also VERY important that you feed your child supplement. They need (so do we) the so called good bacteria, for the GI tracks to be healthy and for the digestion be better. He need vitamins, and probably other supplements (like minerals and healthy oils, fiber,ect). I have found a nurse who has spent her whole life researching causes and solutions for problems people have, but doctors have no answers.She has helped me HUGE and that is the path I would encourage people to go down. Not a doctor necessarily. I respect the doctors, but I experienced that most of them just won`t dig deeper, maybe doesn`t even believe in all that stuff that "health nuts" say. I decided one thing. I don`t care if I am a health nut. It has helped me and I need it.

An other thing is, that the sooner you start the less problem it will be for your child to actually like the "weird, healthy tasting" foods. Everything has to do with what is it that you got accustomed to. If I were you I would research some more about food sensitivities and decide what are the common allergens and totally eliminate them. (I would do sugar, processed foods, legumes, dairy, corn, vinegar, gluten, eggs) Do it for 3 weeks. Feed him lots of vegetables and nuts, some meats and also good grains. and supplements. (also I would ask a doctor about the exact supplements though) There`s TONS of ideas online too for recipes and new foods,even kid friendly. You can cut different shapes for the veggies and playfully feed the child. Dare to experiment, it`ll worth it. Also, do a diary every day. What you fed him, and what was the result. That way you`ll be able to track it.

Be aware, that some foods cause reaction right away, but some can take up to few hours or even day later. Only add back one thing at a time and watch for signs. Wait for at least two days before you try an other suspected bad guy. sometimes a person can handle a certain food once a month, but not every day. You`ll have to experience with it. But you`ll see!

I know it is hard work. I wish you the best and success and healing for your little one!! Think about it, that you are the only one that can help him with the diet and you do it because you love him. Wheather it means to take away his favorite food. Be strong and you will win!!