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Enterolab

JerryK

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barbara3675 Rookie
barbara3675
Posted

Had the full panel and it was the best money I could have spent as I was one of the ones that came up negative in testing at the doctor's office. I also found out I carry a gene which can explain where my granddaughter came up with full-blown celiac disease. I am gluten-intolerant. There have been some symptoms that have plagued me all my life that have gotten worse in later life/now they are gone due to eating gluten-free. It is my feeling that this disease can manifest itself in many ways other than the typical ones. I have had times when I have been so sick that I could not stand up, and I will call them gluten incidents.....I just had to go to bed and sleep it off or wear it off. I can relate it to being very tired and having some major gluten food, like a sub sandwich and an ice cream cone or lot of pizza or something like that. I am 61 now, but looking back, it is very clear. I was diagnosed when I was 59. It can come anytime. Do not hesitate to use Enterolab. Barbara

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celiacgirls Apprentice
celiacgirls
Posted
I have to say that I'm still a bit skeptical of enterolab. I've taken a printout of the website to 3 drs. - pediatrician, ped. GI and an allergist - and all said it wasn't a good test. I'm NOT saying Drs. are always right, but it concerns me that I can't find anyone in the med. community that thinks enterolab really works. Anyone else come up against this?

I was concerned about this so I e-mailed Enterolab to see if they could recommend a doctor in my area. There is a doctor here in Austin who uses their lab so I made an appointment with him. Interestingly, I hear from someone who knows this doctor that his wife has celiac.

I also asked them about a pedi GI and there is a doctor who has used them in the past so I may make an appointment with him for one of my daughters and see what he has to say about Enterolab.

In my extended family, 10 people have been tested by Enterolab and 10 have been positive. Except for my sister, I am not at all surprised by any of them being positive. 4 of them are very short and skinny and 1 has stomach problems. So my family is understandably somewhat skeptical. But for me, the results speak for themselves.

CarlaB Enthusiast
CarlaB
Posted
I was concerned about this so I e-mailed Enterolab to see if they could recommend a doctor in my area. There is a doctor here in Austin who uses their lab so I made an appointment with him. Interestingly, I hear from someone who knows this doctor that his wife has celiac.

I also asked them about a pedi GI and there is a doctor who has used them in the past so I may make an appointment with him for one of my daughters and see what he has to say about Enterolab.

In my extended family, 10 people have been tested by Enterolab and 10 have been positive. Except for my sister, I am not at all surprised by any of them being positive. 4 of them are very short and skinny and 1 has stomach problems. So my family is understandably somewhat skeptical. But for me, the results speak for themselves.

One of my daughters and I tested positive, but another one of my daughters tested negative. So, not everyone tests positive!! I think the reason so many do is that most of us are pretty sure gluten is what's making us sick before we shell out the money for the tests!

AndreaB Contributor
AndreaB
Posted

My husband has 2 celiac genes but he is not gluten intolerant.

Myself, my oldest son and my daughter are all intolerant and either have 2 celiac genes or 1 celiac and 1 gluten sensitivitly gene. My baby hasn't been tested yet.

We got all our results from enterolab. So that is 3 positive and 1 negative for us.

My husband and I are also soy intolerant.

carrielynn Apprentice
carrielynn
Posted
I have to say that I'm still a bit skeptical of enterolab. I've taken a printout of the website to 3 drs. - pediatrician, ped. GI and an allergist - and all said it wasn't a good test. I'm NOT saying Drs. are always right, but it concerns me that I can't find anyone in the med. community that thinks enterolab really works. Anyone else come up against this?

We see very good doctors who we trust who could not figure out what our (now) 6 year old was allergic to that was causing his severe eczema. We took our child to 4 doctors in our city and to one doctor in another city that has several medical hospitals with top doctors in the state. No-one could figure anything out.

Then we went to see a PhD nutritionist in our city who ordered a celiac workup. This guy seems to have a dual-reputation, depending on who you talk to. If you talk to the doctors who we respect, they think he's a quack, especially our allergist, who we really like a lot. If you talk to people who have seen him for their problems, they think he's a godsend.

Anyway, this guy told us that our son had celiac disease based on the test results and had us take him off of gluten and dairy. Within 3 weeks our child's personality had changed dramatically. He went from being a moody tired little guy to being a happy energetic little boy. We'd been so focused on the state of his skin that we hadn't noticed the personality problems until they went away. (Life was unhappy all the way around in our household because of his problem.)

His skin did get better, but he still itches and scratches constantly, so he's still tearing his skin up. We've since added dairy back and in and we don't notice any difference with the itching... if he's on it or off of it.

We decided to do some more research on the celiac situation, since the only person who told us he had it was the Phd nutritionist. We did the Enterolab genetic test for him and it came back positive for a celiac gene and positive for a gluten sensitive gene. So my husband and I are getting tested to see who has these genes. Based on those results we'll do further testing. Either one of us (or both) could have the celiac gene. It could be me because I have all these little health quirks and he doesn't. However, he has relatives who have similar skin problems that my son has, as well as depression issues and migraines and other things.

Anyway, back to the point of your message. I feel like I'm in the middle here. I really do respect all these doctors and I think they are smart. But the reality is, the only thing they ever offered my son was steroids, both oral and topical. The steroids definitely treated the symptoms and made his skin look better, but they didn't treat the cause. These doctors are not trained to find the cause. It doesn't mean they aren't smart or they don't care. But their training is oriented towards treating symptoms.

mart Contributor
mart
Posted

My son had the complete Enterolab celiac panel done. We did because I was still worried about malabsorption issues after almost one year gluten free. The results showed no sensitivity whatsoever to gluten (but then again, he's been gluten-free for almost a year). Also, no problems with malabsorption. However, the swab dna test was positive with 2 celiac genes. I don't know, but this tells me the test is accurate.

Anyway, I freaked out about putting poop in the freezer too. We wrapped it in many layers of plastic bags overnight and then put the container in the DHL package in the freezer in the morning of the day it was to be picked up. When the DHL guy came to get it, the package was in the freezer and even now I have to smile when I remember what he asked me. He took the cold package and said, "wow, what's in here, flowers?" I told him there were in fact flowers in there...lovely and fragrant.

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    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

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