Using Enzymes To Distinguish celiac disease From Gs?

[Cinnamon]

Hello!

This is my first post here, though I've been reading and trying to learn. I have two children who are reacting in different ways to gluten. My son, age 11, was having some really scary neurological symptoms such as staggering at times, seizure-like episodes, and terrible brain fog. At times he would break out in a rash that looked like raised red bumps with tiny blisters. We've been to a million doctors, but every test comes back fine. Almost by accident I discovered that the rashes were caused by wheat, and when I took wheat out of his diet, every symptom disappeared and he was like a new kid!

But staying strictly on this diet is tough, especially for a kid. Someone is always bringing donuts to school (his favorite thing in the world), or having a birthday party with pizza and cake. His dad also is not being very supportive of the diet and is ordering pizza, getting subs for everyone, etc. Ironically, I think he inherited this from his dad, who also has some symptoms, but refuses to even think about it.

I decide to try Enterolab, and I had both my son and 12-year-old daughter tested. My daughter isn't having any neurological symptoms, but often has red blotchy patches and hives, and often complains of feeling sick to her stomach. Surprisingly, my son, whom I was sure had celiac, had negative enterolab results, and my daughter, whom I thought probably didn't have anything more than sensitive skin and a nervous stomach, had positive results. They both have the DQ2 celiac gene and the DQ1 gluten sensitivity gene.

I found some enzyme pills on the Internet that are supposed to break down both gluten and casein, so I thought I would try them with my son at those times when gluten is hard to avoid. They seem to work, and he can eat gluten and have no symptoms. As for my daughter, my plan is to be very strictly gluten free with her, and then try a gluten challenge with the enzymes as a way of seeing whether it's actual celiac or just a sensitivity. It's my understanding that GS is just a problem with sufficiently breaking down gluten, and enzymes can help with that, but if it's celiac, enzymes will give a worse reaction since even a tiny bit of gluten brings on an immune attack, where the immune system isn't involved in GS. Has anyone tried this? Sorry this is so long! Any advice appreciated!

[Lisa]

Welcome,

You will find no better experts on celiac than here. Please read as much as you can from this site.

There is no enzyme pill that will "cure" celiac or break down the offending gluten. Only a true gluten free diet will work for celiac and it's symptoms. Please don't fall for a gimick.

The real facts are right here on celiac.com.

It is clear that gluten effects your children. Learn here how to remove it totally from their diet.

[GlutenWrangler]

If your daughter is truly a celiac or gluten-sensitive, you need to keep her on a strict gluten-free diet. Pills that claim to break down gluten are not designed for celiacs. Your daughter will continue to suffer damage if you allow her to eat gluten while giving her enzymes. There is no cure except the gluten-free diet.

I'm surprised that your son's results came back negative. And it sounds like his rashes caused by wheat could be Dermatitis Herpetiformis (DH), which is the skin manifestation of celiac disease. You might want to get a biopsy the next time he breaks out. It is very obvious that gluten is adversly affecting your children, and you need to keep it away from them. And on top of that, you need to put your foot down with your husband, because if you don't, your children will suffer. If I were you I would do some serious reading on this site in order to get educated. There is no better resource. Good luck,

-Brian

[ravenwoodglass]

"It's my understanding that GS is just a problem with sufficiently breaking down gluten and enzymes can help with that, but if it's celiac, enzymes will give a worse reaction since even a tiny bit of gluten brings on an immune attack, where the immune system isn't involved in GS."

This statement is one of the most serious misunderstandings about gluten intolerance and celiac and unfortunately it is one of the most common.

GS will and does cause autoimmune issues, it is also seems to effect the brain to a larger degree than strictly GI defined celiac with the 2 'recognized' celiac genes. To get some idea of the damage that just 'gluten sensitivity' can cause just look at my signature.

You need to get both of the children off of gluten, period. You have come to a great place for info and support, welcome. Ask any question you need to and read, read, read.

[Fiddle-Faddle]

Did you test your son when he was already off gluten? That might be why he tested negative for celiac.

However, I would like to know exactly why this enzyme seems to be working! I know MommaGoose wrote what we have all been told--that there is no cure for celiac, and that is certainly true. However, this sounds like something promising in helping people avoid serious reactions from cross contamination. Perhaps its worth learning about for all of us.

I am worried about the effect of a non-supportive husband, though. Is your doctor on your side? Since you were able to completely STOP all symptoms by diet alone, wouldn't it be worthwhile to have the doctor tell your husband that it would be dangerous to introduce gluten on purpose?

Most of us have treats at the ready for those times when somebody swoops in with gluteny goodies. There are tons of really good pizza crust recipes here (much better than frozen gluten-free pizza crust)--make some gluten-free pizzas, and freeze them in individual slices, ready to throw in a toaster oven at any moment.

[Cinnamon]

Thank you so much for your replies! You are so right, the best thing is to just be gluten-free all the time, no matter what. I think the enzymes helped my son because he is probably gluten intolerant and not a true celiac. I was reading a site called Enzymestuff, and on there they say that a true celiac would have a worse reaction to gulten with enzymes, but a gluten intolerant person would be helped with them, so that's why I thought I would use them to try to distinguish between the two, not so that we wouldn't be gluten free, but so I'd know just how strict to be with it. A true celiac can never have any gluten ever, but a gluten intolerant person might be able to have a small bit once in a while. The best thing would be to stay 100 % gluten-free all the time, though. Why chance it. I don't know if silent damage is being done, and it's really scary to read your stories! A piece of pizza or donut is just not worth it!

What's really frustrating is feeling like I have to figure this all out myself. The doctors just kind of shrug and say, if they are doing better without wheat, then don't give them wheat. But I'd like to know exactly what's going on. The allergist said they don't have allergies. The neurologist says everything's fine. The regular doctor just says, well don't give them wheat, and there's your diagnosis. I guess he knows there are a lot of false negatives.

Thanks and have a healthy new year!

[Cinnamon]

I just suddenly had the thought that maybe my son tested negative because maybe he doesn't make much IgA. We used Enterolab, and even though he was off gluten for the most part, they say it will still show up. I don't know, it's very confusing.

[nora-n]

Many parents with autistic kids use a gluten-free cf diet and see huge improvements. I f you google K L reichelt or Karyn Seroussy or Gluten-free Casein-free , you will find tons of links about that. There is a urine peptide test for them, too. They are not celiac (villi damage) , but the caeins and gliadins are acting like opioids in thier brain. They have certain enzymes available that can prevent the otherwise unavoidable behavioral regressions (tantrums, crying, autistic symptoms) if they accidentally are glutened.

I have not tried these enzymes myself and have no idea if they would work with me. I have more neuro symptoms. Would be worth a try. I think a company called neurozym has them close by here. www.neurozym.com

All og them (gluten and dasein sensitive autists) have a leaky gut, too, so the new zonulin blocker they are working at for celiacs would be something for the autists, too , I think.

nora

[Fiddle-Faddle]

he is probably gluten intolerant and not a true celiac. I

Even the so-called celiac experts disagree on whether there is always a difference between gluten intolerance and celiac. Since at this point, celiac is only officially diagnosed by either confirming damaged villi of the small intestine, or by a diagnosis of dermatitis herpetiformis (a related rash that you can only get if you have celiac, but most celiacs don't have it), that means that someone who may have celiac but whose villi aren't YET visibly damaged enough for an "official" diagnosis will be told that they don't have celiac. But, obviously, they MAY have celiac, it just might be in the early stages.

My personal opinion is that the current diagnostic criteria for celiac vs. gluten intolerance are ridiculous. It's like waiting til someone has an anaphylactic reaction to eating peanuts before saying that they are truly allergic to them. (I'm using the term allergy loosely, as we know that neither gluten intolerance nor celiac are allergies.) Villi damage can certainly be caused in a gluten-intolerant person by continuing to eat gluten--and that would result in a diagnosis of celiac. But why wait that long?

Genetic testing is not a clear answer either, as there are people on this board with biopsy-confirmed celiac, who possess neither of the so-called celiac genes.

Also, there seem to be many false negative diagnoses, for a variety of reasons (inaccurate blood work, doctors who order the wrong tests, or who read the tests incorrectly, and even the fact that villi damage is often patchy and only visible under a microscope, which means that the chances of the doctor missing an affected area and biopsying an unaffected area are pretty high).

There are also other conditions that can actually cause severe gluten intolerance, with symptoms so similar to celiac, that there might be some grey area there: mercury toxicity, lyme disease, and others that I don't even know about. Both mercury toxicity and lyme disease often cause major neuro symptoms, so you might want to look into them. There is a Lyme Disease thread on this board, and another humongous thread ("OMG--I think I'm on to something") that discusses Lyme, mercury toxicity, bacterial infections, parasites, and systemic yeast infections, among other things.

Obviously, there is much more to learn.

[confusedks]

I just wanted to say a couple of things, 1. Enterolab does NOT diagnose Celiac disease...they can only tell you that you are reacting to gluten! (I didn't know that and ordered it only to find out that they couldn't diagnose me!) 2. I have come to believe that the difference between a Celiac and GS person is that the Celiac should eventually get better on the gluten-free diet, whereas a GS person may not.

For example, my grandma was diagnosed with Celiac last year, and mentioned it to me, so I researched it like crazy and asked my Dr. to order the test, he did and it was negative. He didn't order the right tests, so we will never really know. I was REALLY sick at the time and I decided to go gluten-free, cf anyways...not really caring what tests said.

Now, it has been many months since I have stuck to this diet religiously, but it still didn't improve my symptoms. I actually have Lyme Disease, and possibly Celiac since a family member was diagnosed, and I have the "Celiac genes."

I guess the point in all of that is if your kids don't get 100% better on the gluten-free diet, you should explore other things. I was really frustrated when I finally went to a GI dr. because she wants me to go on a gluten challenge and scope me to prove whether I have Celiac or not...well, my Lyme Dr. said no way! I may do it one day, but for now...heck no!

The reason the GI wants to do this is because she wants to know for sure if I need to be gluten free. Her whole thing was "why stick to a crazy diet if you're not getting better?" I agree with her, but I also think a gluten-free diet is way better for people than a diet of gluten. She also said if I do have Celiac, then I need to be monitored for other Auto-Immune disorders because they can be dangerous, especially since they run in my family.

But, listen to your gut...and I think take your son off of gluten 100%!

[Fiddle-Faddle]

I just wanted to say a couple of things, 1. Enterolab does NOT diagnose Celiac disease...they can only tell you that you are reacting to gluten! (I didn't know that and ordered it only to find out that they couldn't diagnose me!) 2. I have come to believe that the difference between a Celiac and GS person is that the Celiac should eventually get better on the gluten-free diet, whereas a GS person may not.

Thanks for clarifying about Enterolab--I didn't realize they didn't diagnose celiac, as I never went through them.

A GS person, like a Celiac person, SHOULD get better on a gluten-free diet unless there is something else going on causing the gluten sensitivity (like Lyme Disease, mercury toxicity, bacterial infections, systemic yeast infections, all mentioned above). If you are gluten sensitive, you may have to remain gluten-free forever, depending on what is causing your sensitivity to gluten, and whether your immune system will continue to recognize gluten as an invader. As far as I can understand, once your IgG is "activated" against gluten, it will always react to gluten. Feel free to correct me if you understand differently!

[confusedks]

Fiddle Faddle,

I believe you are right about the healing/results part of the diet. One of the members on this board had a GS because of Lyme disease, and since she has healed her gut (with treatment), she can now eat anything she wants. I have no idea if I will experience the same thing, since Celiac was dx'd in my family.

I know there are some Celiacs who don't get 100% better on the diet, but it's usually because they need to take one/two more offending food out of their diet. I took eggs, nuts, dairy, soy, out and I felt that I would end up eating nothing if I continued to take foods out that bothered me.

I think a lot of people think Enterolab diagnoses Celiac and it does NOT!!! Also, some people write in their signatures "diagnosed by Enterolab." It's not a diagnosis of Celiac, just GS and I think a lot of people (particularly newbies) think that they mean diagnosed as a Celiac by Enterolab.

[Fiddle-Faddle]

I don't know, Kassandra, I do think that for the most part, GS and Celiac are, at least for all practical purposes, one and the same unless there are other things (like Lyme) going on.

If your life can be destroyed by gluten, it doesn't really matter what you call it, especially when there are no other destructive factors going on.

[GlutenWrangler]

I don't buy into the fact that enzymes would cause a Celiac to have a worse reaction, but help someone who is "gluten intolerant". It makes no sense. I am a Celiac and have used enzymes, and my reaction to cross contamination was no worse than when I didn't take enzymes. There really is no difference between Celiac Disease and Gluten Intolerance. A crumb of wheat affects Celiacs and people with Gluten Intolerance the same way. The ONLY difference between the diagnoses is that Celiac Disease is characterized by flattened or blunted villi, while Gluten Intolerance shows normal histology. But it is very likely that Gluten Intolerance is just an early form of Celiac Disease. I have two "Gluten Sensitivity" genes, DQ1 and DQ3, which means many doctors would say that I cannot have Celiac Disease because I don't have DQ2 or DQ8. But I DO have Celiac Disease, which proves that Gluten Intolerance can evolve into Celiac Disease. If genetics can't distinguish Celiac Disease form Gluten Intolerance, then how can doctors definitively distinguish between the two? Don't believe the hype,

-Brian

[Cinnamon]

Wow, it's all so very confusing. But the bottom line I guess is, if it's bad for you, don't eat it!

They did test my son for Lyme, and it was negative, but my daughter should be tested as well. I wonder if she might have an ulcer too, but when i talked to the doctor about all this, he said to just take the wheat out of the diet and see how it goes, so that's what we'll do. She wasn't having much, but time to go 100%, get new pots, colander, etc.

And you're right, I read much of this on autism websites and ordered the enzymes from an autism website even though the kids are not autistic, but I think they may have a leaky gut thing going on.

Thanks for all your help!

[kbtoyssni]

I've always felt that GS and celiac are part of a spectrum of how sick you've become. You start off gluten sensitive, keeping eating gluten and get more and more damage until you end up celiac. GS is a good thing in my opinion - it means you caught it before it got really bad.

Unfortunately your experience with the doctor not giving you much info is very typical. Most doctors don't know much about celiac and can't give out a lot of information. It's up to you to learn about it to keep your kids healthy.

Just wanted to make sure you are also eliminating barley, rye and oats (you may already know that, but you did say just wheat and I'd hate for you to go through the effort and not be 100% gluten-free).

As for your son having a hard time with donuts at school, you've got to teach him how to deal. Letting him eat gluten is not going to help him and his health. You can get gluten-free donuts. Check out the parents forum - there's lots of great tips on how to deal with children having to eat "differently" than everyone else.

[Cinnamon]

Oh no, I was giving them oats! I have got a lot to learn! I just found out that Rice Krispies and Corn Flakes aren't gluten free either! We have to come up with a whole new way of eating!

[ravenwoodglass]

Oh no, I was giving them oats! I have got a lot to learn! I just found out that Rice Krispies and Corn Flakes aren't gluten free either! We have to come up with a whole new way of eating!

Do you by any chance have a Wegmans store near you? They have gluten-free corn flakes and they also label all the food they produce that is gluten-free. Shopping there helped my family a lot at first, you just look for the circle G and you know you have no gluten and no CC risk. I don't know if you live in a state they are in but just in case I thought I should mention it.

[Cinnamon]

I live in NJ and never heard of Wegman's but I will look for it. It would be so helpful to have things labeled. I think for now I will have to shop at the health food store if I can't find it, until I get everything straight. Thanks for all your help! I don't know what people did without the internet.

[chlobo]

I'm just curious, since everyone keeps mentioning Lyme disease. What other symptoms might point to Lyme disease? Or is it just that the gluten intolerance is secondary to the lyme disease, which at the time is presenting no symptoms?

[ravenwoodglass]

I live in NJ and never heard of Wegman's but I will look for it. It would be so helpful to have things labeled. I think for now I will have to shop at the health food store if I can't find it, until I get everything straight. Thanks for all your help! I don't know what people did without the internet.

I do think they have at least a few stores in NJ, they are based out of Rochester NY. You can call 1-800-WEGMANS a real human will answer the phone and let you know if there is one near you.

[ravenwoodglass]

I'm just curious, since everyone keeps mentioning Lyme disease. What other symptoms might point to Lyme disease? Or is it just that the gluten intolerance is secondary to the lyme disease, which at the time is presenting no symptoms?

You may want to post this as a seperate topic, there are many Lyme knowledgable folks here. There are times when gluten and other intolerances can be a subset of Lyme symptoms and there are times when Lyme, or another stress on the body, will trigger celiac or gluten intolerance that is genetically driven. Others will be able to answer much better than I though.