Newbie-please Help! ;)

[Lindsay GFMom]

We just received tests results from Enterolab for my 4.5yo son. He was found to be both gluten & dairy intolerant. (For the gluten he had: High fecal Antigliadin IgA & autoimmune reaction to human enzyme tissue transglutaminase) He also carries two gluten marker genes--one for gluten intolerance and one for Celiac disease. Does this mean that he HAS Celiac Disease? Or is he only "gluten intolerant?" In a child, is there any way to make that distinction?

Edited to include more information:

He is showing "active gluten sensitivity" per the Enterolab test. He also has the Celiac gene. He has NOT ever had any blood tests done. He also doesn't have any "gut symptoms" of gluten intolerance. We had him tested because from age 6 months to age 4.5 he's gone from 75-90% in height down to 15%. OTOH, according to the Enterolab test, his fecal fat score shows that "digestion and absorption of nutrients is currently normal." I guess I'd question that...

As far as the biopsy and bloodwork go, because of his history, both of these things would be very traumatic to him. (More so than regular 4.5yo kid fears.) I would really rather not do them. (Not to mention the fact that we've now been gluten-free for a couple weeks and I really don't want to "go back" and confuse him more.) If I go to my ped I'm quite sure he will immediately order blood tests.

But I don't really see a reason to do them. If he has 2 genes for gluten intolerance (including the Celiac gene) and is showing autoimmune response in his lab work, then he really shouldn't ever have gluten again, should he?

Thanks for your help. This is all new and I don't want to traumatize him unnecessarily.

[e&j0304]

Hello and welcome!

Enterolab cannot diagnose celiac disease. They diagnose a gluten intolerance. The only way to diagnose "celiac disease" is through positive bloodwork and biopsy. The genes help to identify those people who may be predisposed to developing celiac, but having them doesn't mean a person has the disease.

Were there ever any blood tests run on your son? Specifically the tTG?

I'm sure you know whether or not your child can tolerate gluten so you know that he's gluten intolerant. Unless you have the bloodwork and biopsy done you won't know whether or not he has celiac disease. I hope that cleared a few things up for you.

Good luck!

[Lindsay GFMom]

Enterolab cannot diagnose celiac disease. They diagnose a gluten intolerance. The only way to diagnose "celiac disease" is through positive bloodwork and biopsy. The genes help to identify those people who may be predisposed to developing celiac, but having them doesn't mean a person has the disease.

Were there ever any blood tests run on your son? Specifically the tTG?

I'm sure you know whether or not your child can tolerate gluten so you know that he's gluten intolerant. Unless you have the bloodwork and biopsy done you won't know whether or not he has celiac disease. I hope that cleared a few things up for you.

You have cleared up a few things. I hope you can clear this up...

He is showing "active gluten sensitivity" per the Enterolab test. He also has the Celiac gene. He has NOT ever had any blood tests done. He also doesn't have any "gut symptoms" of gluten intolerance. We had him tested because from age 6 months to age 4.5 he's gone from 75-90% in height down to 15%. OTOH, according to the Enterolab test, his fecal fat score shows that "digestion and absorption of nutrients is currently normal." I guess I'd question that...

As far as the biopsy and bloodwork go, because of his history, both of these things would be very traumatic to him. (More so than regular 4.5yo kid fears.) I would really rather not do them. (Not to mention the fact that we've now been gluten-free for a couple weeks and I really don't want to "go back" and confuse him more.) If I go to my ped I'm quite sure he will immediately order blood tests.

But I don't really see a reason to do them. If he has 2 genes for gluten intolerance (including the Celiac gene) and is showing autoimmune response in his lab work, then he really shouldn't ever have gluten again, should he?

Thanks for your help. This is all new and I don't want to traumatize him unnecessarily.

[Nantzie]

Many, many, many, many people here were "diagnosed" by Enterolab. The mainstream testing (blood, biopsy) isn't very reliable.

My kids were both diagnosed by Enterolab. Their GI doctor took the tests seriously and recommended against the biopsy based on the Enterolab tests and their positive dietary response. She said that even a positive biopsy wouldn't show us anything we didn't already know. Now, they just get blood tests once a year to monitor other associated conditions such as thyroid imbalance and diabetes.

For the most part, the only way to know for sure if gluten is an issue is to try him on the gluten-free diet.

You didn't mention if he was having celiac-like symptoms, or if you were testing him for other reasons (such as a family member with celiac).

If he's having celiac-like symptoms, definitely try him on the gluten-free diet.

We have a saying that pops up around here sometimes - If it quacks like a celiac, it's a celiac.

Whether it's technically celiac (positive blood and biopsy) or gluten intolerance, people who have serious issues with gluten can get severe reactions.

The difference between celiac and gluten intolerance is really splitting hairs. As an example, take my case -- I had been sick with IBS-type symptoms since I was 17. I had insomnia and nightmares since I was a toddler. I didn't do well in school because I couldn't concentrate or remember anything. I started having pain and neuro symptoms so bad that I could barely walk when I was 32. It was around this time when I got to the point where I was basically incontinent too. I also started getting migraines. About two months before I went gluten-free, my tongue started swelling and I was having a hard time speaking.

When I went gluten free, ALL of those symptoms went away like somebody flipped a switch. I'm talking three years of those symptoms, gettting worse and worse, and within a couple of days, they were gone. I could walk, I didn't have to worry about my bathroom issues and I slept like a baby.

My blood tests? Negative.

Biopsy? Perfectly formed villi.

Genetic testing through Enterolab? Two gluten intolerant genes (couldn't afford the stool tests)

So I'm not celiac. But I'll be darned if I'm going to say that I was any less sick than someone who has a positive biopsy.

Ack!! Sorry, I've gone off on my own little tangent. I don't disagree at all with E&J's answer, by the way, but really the difference between celiac and not celiac is minimal, if anything. I involved my doctors and my kids have a GI doctor who follows them. I am always a proponent of medical testing and all of that, as long as you don't just leave it at that and try the diet anyway, I think you should go through the regular testing as well.

I think that that 20 years from now, when all of this is figured out by the researchers, there will be "types" of celiac just like there are "types" of diabetes. Type 1, type 2 and type 3 celiac.

Anyway...

If you son is having symptoms, definitely try the diet. It's a healthy way to eat and will be the only way to answer the question of whether gluten effects him.

Like E&J said, the gene only tells you if you're predisposed to it. Not necessarily that you have it.

Again, sorry about my tangent.

Nancy

[e&j0304]

Please don't think for a second that I think gluten intolerance isn't something to be taken seriously. I just wanted you to understand the difference between a "celiac diagnosis" that the general medical community will accept and a diagnosis of gluten intolerance through Enterolab. I didn't say that enterolab couldn't diagnose an intolerance. I just said that they can't diagnose celiac. I am not saying that one is better or worse than the other. I have actually known people who have no celiac genes (so would be considered gluten intolerant) that have worse reactions from gluten than proven celiacs. I am of the belief that celiac is just the tip of the iceburg and that there is a broad range of gluten intolerance. Just for the record, I too had my children tested through enterolab and one was positive and the other negative. They both react to gluten however...

I wish you the best of luck with your child. Trust me, I know how traumatic those blood draws can be and both of my kids have been through it multiple times. I completely understand how you wouldn't want to put him through that. Everyone has their reasons for choosing different types of testing methods and I respect you for your choices. I just wanted to make sure that you understood that once you have him on a gluten free diet you can't go back and get a blood test or biopsy without putting him through a gluten challenge that may make him miserable. I am only bringing this up because we are going through this with my 2 year old right now and it's so very hard.

As I see it, there are benefits to knowing for sure if your child has celiac but not everyone agrees with that and that's ok. I just wanted you to have the information to make an informed decision and the rest is up to you. You sound like a great mommy and you obviously want what's best for your child. I'm sure you will figure it all out and get your child well.

Good luck to you and your little guy.

[rez]

I too have had my child tested through Enterolab. What the previous poster said was ABSOLUTELY 100% correct. Enterolab cannont diagnosis Celiac and they will tell you that themselves. They look for antibodies to gluten, but cannot prove it's Celiac. Also, I think some of us who have used Enterolab question their validity. Dr. Fine has not published any of his data and has not had his methods reviewed by any of his peers. If that is a good enough diagnosis for you, that's great! :) Just so you know, Enterolab is not accepted as "valid" by the majority of MD's. I think Enterolab is definitely on to something, but I'm frustrated with the data not being published. My son came back from Enterolab showing a sensitivity to gluten and casein. His tTG/ autoimmune reaction from Enterolab was negative. I later had him tested by blood and it was positive. Also, I know many people who's Enterolab tTG was positive and negative by blood. I also know someone who's son came back negative through Enterolab, but has a HUGE intolerance to gluten. Basically, no test is 100%. Celiac is a life long condition that your child will have to live with for the next 90 years, give or take a few. Personally, I'm trying to attain a diagnosis for my son, but if that doesn't work out, I'm going to go off dietary response and let him decide for himself as he gets older. Again, this is just my opinion, but I think it's wise to go the medical route first. Remember, there are several conditions that improve on a gluten free diet, not just Celiac. Also, there are issues w/ anemia, thyroid, and bone density that require intervention from doctors. I would just tell your doctor your plan and maybe he'll be supportive. My family practice doctor was very supportive off dietary response alone, but it's me that needs the finality. I also want to be a pioneer for awareness and education in the Celiac field. I believe everything happens for a reason and my passion right now is to help others so they don't have to go through the same struggles we did. We're in the process of a gluten challenge now and it's not fun and it may have messed up our diagnosis. That's why if there's any little part of you that thinks you might ever want to know for sure, I would have the bloodwork done. I know it's not fun, but if it gives you concrete answers, it would be worth it. The biopsy in the beginning sounded "so invasive" to us, and now we've been fooling around with all this for a year. I look back and think if I just would have let them do what they initially wanted to, we could be moving forward. This has consumed me and I'm so ready to move on. Again, that's totally my opinion and I know others feel very strongly the other way. Good luck!

[rez]

Ps. Everyone diagnosed by Enterolab has gluten sensitivity genes. There is a thread about that somewhere on the board.

[Lindsay GFMom]

Ps. Everyone diagnosed by Enterolab has gluten sensitivity genes. There is a thread about that somewhere on the board.

Really? The Celiac gene too?

If you could tell me where the post is, I'd love to read it.

Thanks everyone who has posted so far!

[rez]

Really? The Celiac gene too?

If you could tell me where the post is, I'd love to read it.

Thanks everyone who has posted so far!

DQ2 and DQ8 are the Celiac genes, and no not everyone is diagnosed with those, BUT everyone comes back even if they don't have these with a report saying "they have gluten sensitivity genes". They name all the other DQ genes as "gluten sensitivity genes". The only one they say isn't is DQ4 and I think that this gene is predominantly found in Asians. I thought Enterolab would be enough too, but then my son would have symptoms and I would think "did he get gluten, or is this diet not working." It's so hard as a parent to have all the weight on your shoulders. At least it was for me. I was driving myself bonkers over it. They're kids and they'll be around others at school and at play dates. It was so nerve racking. My son has multiple food intolerances. Celiac has a lot of stuff that goes along w/ it. My son also has low iron and we found out my daughter is Hypothyroid. The number one thing is to find a good, well-educated doctor with a great bed side manner. We went through several, but now have two FANTASTIC doctors. It's the hugest sigh of relief to know all the pressure isn't on me alone anymore. I know there's still a lot to figure out, but I have so much more concrete info now. They also found out my son is lactose intolerant. All these medical things are great to know. They think it's a secondary condition caused by the Celiac proper. Again, if you ever think you will want to know, do it now. Turning the clock back is hard. Good luck. I've been through it all so let me know if you need anything. Dr. Guandalini is in Chicago. Don't know if you're near but he's great. You could have your doc do a tTG and total IgA. My son's tTG was still postiive after being gluten free for 3 months. Our doctor said the tTG halves itself every two months. Good luck and hang in there!

[rez]

I just looked in your profile and noticed that your son has DQ1 and DQ3 I think. Those technically are not Celiac genes. Celiac genes are DQ2 and DQ8. They are still researching and I think that there may be more, but I thought you'd like to know that according to current data, your son does not have a celiac gene. I think that honestly classic celiac is only the tip of the iceberg and they will know so much more in the future. I did the gluten free diet with my son and honestly felt tons better. Our whole family felt better. We all are waiting for the biopsy and then we will all be screened. Regardless of the "official" results, we'll do what's best for us as a family, official diagnosis or not.

[CMCM]

I just got done reading the newest gluten book..."The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your health & What you can do to take control now", published in November 06, $12 at Amazon. This is a good book, has a lot which many of us already know, but also some newer information. I learned a lot of new stuff from it.

This book mentions a lot about Enterolab's testing (among other things), and it really emphasizes how many doctors wish to change how all this is viewed, mainly, that it should be recognized that there is this huge widespread, far reaching condition of gluten sensitivity that affects perhaps 80% of Americans (who don't realize it). Within this group of affected gluten sensitive people, perhaps 3% or so have a celiac gene AND triggered condition of celiac disease, which they wish to consider as an extreme subset of the overall gluten sensitivity syndrome.

Gluten sensitivity is not a trivial thing. Its symptoms can be a serious and far reaching as those of celiac disease. The only progression that does not occur is the extreme auto immune reactions and possible path of additional auto immune diseases. But gluten sensitivity CAN cause damage. They mentioned how when you put gluten into a petri dish with human tissue, the gluten attacks and destroys the tissue. Gluten sensitivity can and does attack organs and tissue inside our bodies. This is why whether you are "merely" gluten senstive, or have the additional danger of celiac disease, the answer is the same: YOU SHOULD NOT EAT GLUTEN. PERIOD.

[Nantzie]

Ps. Everyone diagnosed by Enterolab has gluten sensitivity genes. There is a thread about that somewhere on the board.

I would really LOVE to find someone who doesn't have any symptoms, and doesn't have any family members who are possibly celiac or gluten intolerant, and have them tested by Enterolab. Personally, I can't think of one single person who doesn't have tummy issues of some degree in my group of friends/family. Even the few who don't I know have family members who at least have some mild level of celiac-type issues.

I think that there's a chance that Dr. Fine and other doctors who are leaning toward the 80% of the population being predisposed to gluten sensitivity may be on the cutting edge. If there is any truth to it, this is the type of thing that people win the Nobel Prize in Medicine for. Which may be why he hasn't published yet for peer review. There is a huge difference between saying, "Hey, I designed a cool new test for gluten issues", to "Hey, I think 80% of the human race may be predisposed to having serious gluten issues". Maybe he is doing some additional research to support his theories.

Has anyone written and asked about any of this. I always remember Phyllis (the lady who answers the emails) is always so nice and helpful. Maybe there is more going on behind the scenes.

Nancy

PS - Sorry about my earlier post. Lots of stress here. No harm meant at all.

[Nantzie]

Lindsey, I just saw that you added some new information to your original posts.

If I were you, I would keep him gluten-free (since you already started). The next time you go to the doctor just let him know that you've put your son on a gluten-free diet to see if his growth improves. The doctor will probably just make a note of it and will probably be interested in whether his growth improves.

I would keep him gluten-free for six months. If there is no improvement and no significant growth in that timeframe, I would say that even though he has one of the main celiac genes, it may not be active.

BTW, before going gluten-free, my daughter used to get really upset and freak out over every little thing. She was afraid of ev-er-y-thing. Very clingy and needing comfort all the time. She was even afraid of Playdough, and wouldn't even touch it. She would actually run out of the room, and scream and cry if I tried of hold her and show her how fun it was to squish (I used to LOVE playdough..). Kind of ironic now that I know that Playdough is a wheat-based dough.

The father of a friend of mine was actually diagnosed as having celiac over 50 years ago as a toddler. I think that his main symptom was not growing at the rate they expected him to.

Since your son has one of the main celiac genes, the likelihood of him having true celiac is higher, but isn't definite.

Nancy

[Lindsay GFMom]

I just looked in your profile and noticed that your son has DQ1 and DQ3 I think. Those technically are not Celiac genes. Celiac genes are DQ2 and DQ8.

Just to clarify, yes, he does have Celiac genes, although it doesn't specify whether he has #2 or #8.

[rez]

Just to clarify, yes, he does have Celiac genes, although it doesn't specify whether he has #2 or #8.

checked it out and I was reading the Enterolab results wrong. Those are confusing. Sorry,

[babygirl1234]

they can be hard to read since you arnt a doctor and they talk in med terms lol

[rez]

My intent on this board is to HELP people and try to support and empathize with them. It's a shame that some people have to ruin things. To the original poster, I wish you all the support and luck with your journey.