Enterolab Results - Need Help

[misulli]

Hi,

I just got my enterolab results back and need some better interpretation on where to go from here. I know many of you have gone through this yourselves. Here are the results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 18 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow

[JustMe75]

I read this and your other post and I am kinda in the same boat. I didn't do the Entrolab tests but did have negative blood work and double DQ2 also. I decided to try the gluten free diet back in October and it has made such a difference in my life! I can eat and go for a drive after and not be afraid that I won't make it to a bathroom. My husband wasn't (sometimes still isn't) very supportive but he is starting to realize that it must be doing something good since I am not sick all the time. My advice would be to try the diet.

I have tried to convince myself like this. I have 2 copies of the main celiac genes, I have major digestive symptoms, chances are I just haven't done enough damage to my body to test positive for celiac. Or, maybe I am intollerant to gluten, either way the goal is to feel better and if it works who cares if its an official diagnosis or not.

Put it this way.... My son has an allergic reaction to eating shellfish. He has never been tested to see if he is allergic, but it is obvious that he is. It wouldn't make sense for him to eat it just because it isn't officialy a problem.

Good luck and if you need help starting the diet you will find so much information on here! Whenever you feel lonely read some posts and you will see that we have all been there! It gets easier.

[misulli]

Thanks so much. You are right. It does help to know others are in the same boat!

[lizard00]

Sorry to hear you feel so unsupported!! My first question is this: Do you feel bad all the time? My husband thought the gluten thing was "weird" at first... But then I started to feel better. And I am starting to become the person that he married again. So, if you are already not gluten-free/CF and feel bad (and obviously something's up if you felt the need to be tested), start the diet and get better. At first my mom said "Don't be one of those people who blames food for everything..." now when we go to a restaurant, before I sit down she's already asked for a gluten-free menu for me. Perception is reality- and when they "perceive" that you are getting better, their opinions will change. Stick with it!!! It will be worth it!!!

[misulli]

I do feel badly most of the time and live on Imodium so I can function during the day (ie: go to work, take care of my children, etc). I am happy to have found the cause, although my gastro doc will surely dismiss the Enterolab results. He has done every test except for a endoscopy. All with normal resuts (including the blood tests for Celiac). He has now determined I have IBS and not much can be done. Based on all I have read regarding other peoples Enterolab results and thier success on the Gluten free diet, I am most certaily going to try it. However, the results also state I have a reaction to Casien as well. When I told my husband last night, he just said "whatever". I was heartbroken... The worse part is that according to the results, I carry the genes on both Alleles and will most certainly pass on one to my children. Celiac also runs in my husbands family (although when one of his sisters stated she had been diagnoses, no one cared...) So basically, if my kids start getting sick and I want to have them tested, it will probably be a battle. UGH. I am very overwhelmed right now and not sure where to begin...

[lizard00]

First, do some research to give to him. That way, he can understand the consequences of untreated Celiac/gluten sensitivity. And not to down "smaller" websites, but give him some info from well known source; ie The NIH, or The Mayo Clinic, etc. This way, it's not just from some random website. And don't try to push your dietary decisions on him. Maybe he feels threatened that he's going to have to give things up too. Do the gluten-free diet, and try to continue to make things for your family that are familiar (if possible). Many foods are naturally gluten-free, or can become gluten-free with simple adjustments. I made lasagna for my husband's family with rice noodles, and the only reason they knew the noodles were rice was because we told them.

And I understand with your children. Just cross that bridge when you must. My son shows no signs of gluten intolerance what so ever, if he does, we'll deal with it then. But for now, I monitor him and hope he never does. So right now, focus on getting yourself better. IF they get sick, you'll be much better prepared to handle it. And perhaps you will have made a believer out of your husband.

I'm so sorry that you have to deal with this seemingly alone, but you are not. We are here to answer any question, listen to any vent, give any information, etc. Celiac is so misunderstood by many. Take this opportunity to educate at least one person. And I wouldn't give the GI any more thought... mine told me that I have to be carrying the gene to have Celiac. I haven't had any genetic testing. But apparently, he knows my genetics, maybe he has x-ray vision!

[misulli]

Thanks, that is great advice. I am hopeful I will begin to feel better and that alone will help him understand. He comes from the type of family that unless you are truly dying (ie: blood pouring out form somewhere), you don't need any medical help. I think if he lived just one day in my shoes, he'd be at the doctor office by the afternoon! Thanks again! :-)

[ravenwoodglass]

Thanks, that is great advice. I am hopeful I will begin to feel better and that alone will help him understand. He comes from the type of family that unless you are truly dying (ie: blood pouring out form somewhere), you don't need any medical help. I think if he lived just one day in my shoes, he'd be at the doctor office by the afternoon! Thanks again! :-)

Boy would he!!!!!! What really made a believer out of my family was my recovery. I have gotten the same 'ugh, okay' reaction after testing 5 years later for soy and casien. Since I am not obviously on my death bed like I was before gluten these intolerances don't get much 'respect'. My recovery from gluten did lead the rest of my family to be tested. They all were lucky and showed up on blood work. My doctors were like yours and even though they tested for celiac over and over and I was clearly at the end stages of the disease, they never even told me what 'sprue' was just that my tests were negative. Boy do I wish I had known to try the diet, or about Enterolab. My and my childrens life would have been so different.

As mentioned there are many foods that are naturally gluten free, stews can be thickened with potatoes grated or cut real small and cooked till they dissolve. Baked chicken, potatoes, fish, rice, you could cook gluten free a lot and not even have anyone know.

There are even gluten free mixes for things like pizza crusts, cakes, cookies that even gluten eaters will enjoy. The Gluten Free Pantry makes a great french bread mix that makes a wonderful gluten-free pizza crust , to name just one.

You have found a great place for info and support. Welcome. It will get easier.

[misulli]

In terms of my gene test results, it looks like I have a copy each of the 0201. Is this, combined with my other test results fairly indicative of Celiac or gluten sensativity? I do not see too many on this board with the same gene types.

Thank.

M

[ravenwoodglass]

In terms of my gene test results, it looks like I have a copy each of the 0201. Is this, combined with my other test results fairly indicative of Celiac or gluten sensativity? I do not see too many on this board with the same gene types.

Thank.

M

It is a strong indicator and it also means that each of your parents carries at least one copy of the gene. The genes are considered to be recognized main celiac genes, as Enterolab says. Whether you are a full blown celiac or still in the stage where you are considered gluten intolerant is really not important. You need to be just as strict no matter which you are. If you enter just your gene type in a good search engine you may be able to find a lot of information. Keep in mind also that genetic research is in it's infancy and that we are learning more and more every day.

[misulli]

Thank you all so much. This can all be so confusing and frustrating. The next big question is do I bring these results to the Gastro doc who has all but given up on me and diagnosed me with IBS. My bloodwork for Celiac done 6 months ago had come back normal as did a colonscopy. He doesn't feel the need to do an endoscopy. My main issues were D (all the time but abated by daily doses of Imodium), bloating, and gas.

Michelle

[lizard00]

If you already have an appt, I would take the results. But be prepared for him to not accept them. Many doctors do not consider Enterolab to be credible.

Many people on this forum, myself included, feel that IBS is but a symptom. Something is causing the irritation, and once that factor has been identified and treated, then the irritation goes away. If he is truly at a loss, why wouldn't he do an endoscopy? Seems as though that would be one more thing to help get a look at what's going on inside of you. I'm sure he also know the chances of those blood tests being inaccurate. You could do a few different things:

You could ask him to give you 6 weeks gluten-free- you'll follow up with your findings. If your symptoms begin to resolve, then you have an answer. The flaw with this, though, is that at this point you have really made your chances of an accurate DX by blood or even endo slim. He might want to do a challenge, in which you eat gluten for a certain amount of time.

You could also have him order a genetic test. But work with him on this so that's it's not a lab that doesn't specialize in genetic testing... or again, you may have inaccurate results.

OR, if it's really not so important to you to have an official Dx, then take your Enterolab results and go on your merry way being gluten-free and feeling better. Because that's really what the goal is anyway.

[misulli]

My appointment is not until the end of March. I started eliminating Gluten yesterday. I am hoping I will show some improvement prior to my appointment and then I would also have to share with him. By the way, I stopped off at Whole Foods earlier this morning and was amazed and very pleased to see the amount of gluten free stuff they had there.

[lizard00]

Whole Foods is one of my favorite places!!! If you go online, (or even at the cust svc desk) there is a list of EVERY food in their store. It's great!!!

Good for you taking the first step! I hope you start to feel better ASAP!