Guess I'm In The Club....

[vthuskies]

I just got my Enterolab results back. Geez, those were the longest 2 weeks of my life! I'm not surprised by the first 2 results, but I'm kinda suprised my fat score was in the normal range. At least I know what's going on with my body and I can see the light at the end of the tunnel.

Gluten sensitivity Stool Panel Complete

Fecal Antigliadin IgA 174 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 112 Units (Normal Range <10 Units)

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

I'm going to take these results when I meet with my new GI on Oct. 9th. My regular physician has basically said he did all he could do for me and now I have to deal with the GI's. Should I push for an endoscopy (would this even show anything since my fat score was normal?) to confirm the diagnosis or should I have them run the complete celiac panel(my gp ran part of the celiac panel in April and it came back negative)? I feel like I need an official diagnosis to convince the rest of my family to get tested (even then, I'm not sure that they would).

Also, what do I need to do to get my daughter tested? I would like to try to go thru her pediatrician. Does she need gene testing or the celiac panel? BTW, she's 5 years old, very small, and often complains of stomach aches (although that could be because she hears me complaining about my stomach hurting all the time, but I don't want to dismiss her complaints).

Thanks for your help and suggestions!

Amy

[ravenwoodglass]

  vthuskies said:

I just got my Enterolab results back. Geez, those were the longest 2 weeks of my life! I'm not surprised by the first 2 results, but I'm kinda suprised my fat score was in the normal range. At least I know what's going on with my body and I can see the light at the end of the tunnel.

Gluten sensitivity Stool Panel Complete

Fecal Antigliadin IgA 174 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 112 Units (Normal Range <10 Units)

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

I'm going to take these results when I meet with my new GI on Oct. 9th. My regular physician has basically said he did all he could do for me and now I have to deal with the GI's. Should I push for an endoscopy to confirm the diagnosis (my gp ran part of the celiac panel in April and it came back negative)? I feel like I need an official diagnosis to convince the rest of my family to get tested (even then, I'm not sure that they would).

Also, what do I need to do to get my daughter tested? I would like to try to go thru her pediatrician. Does she need gene testing or the celiac panel? BTW, she's 5 years old, very small, and often complains of stomach aches (although that could be because she hears me complaining about my stomach hurting all the time, but I don't want to dismiss her complaints).

Thanks for your help and suggestions!

Amy

Please don't think she is complaining just because you do. Chances are really good that she is uncomfortable not parrotting you. Do ask her ped to run a complete celiac panel. You may be able to call the office and say something along the lines of "I am being tested for celiac and it looks like there is a really strong chance that I have it. Can we get the doctor to order a celiac panel for my DD since she also has long standing tummy issues" They should be able to just call in the order. There is a high chance of a false negative in children her age though. If you want to have a biopsy done then don't pull her off gluten until that is done. Make sure you don't go gluten-free until your visit either if you plan on letting the GI biopsy. Biopsies do have false negatives though, you need to be aware of that. I would ask the GI to run a full celiac panel on you and also talk to him about the concerns for your daughter. I understand your wanting a firm doctor derived diagnosis but even if the GI tests come out negative you should give the diet a good strict try for a while.

[mftnchn]

Those are clear results. If your GP did not run a total IgA, that might explain your negative blood test results. I think if I were you, I would push for a biopsy for yourself. If that is positive and you are diagnosed celiac, it may make your daughter's diagnosis easier.

I'd stay on gluten and hang in there until you finish your testing.

If finances are a concern, I'd hold off on the gene testing which isn't diagnostic. Start with the gold standard testing for your daughter as well.

[vthuskies]

Thank you both for your quick and informative responses! I have such mixed emotions right now and this helps to clarify what I need to do next.

I haven't been dismissing dd's stomach complaints and I'll definitely call her ped to have her run the celiac panel. Hopefully the doc (and my daughter) will be cooperative!

At my GI appt I am going to request that they run the complete celiac panel. I had edited my original post to add that I wouldn't think the endoscopy would show anything since my malabsorption score was normal, which according to enterolab, means that there isn't severe intestinal damage yet.

My plan is to see the GI, see what tests he'll run, and then go gluten-free after testing. Regardless of what dd's pediatrician does, she'll probably go gluten-free too. Hubby refuses to do it, says it's too hard to be gluten-free and vegetarian

Amy

[fedora]

hi,

remember no test is perfect....... Just because your enterolab showed no fat malabsorption problems does not mean that you do not have any. They test one stool, not a bunch over time. Also you have evidence of malabsorption problems and digestive system damage.....B12 deficiency and lactose intolerance. So if you are up for it an endoscopy may show damage.

my 7 year old daughter has been on a gluten free vegetarian diet for over 3 months now. It is doable if you have to

[vthuskies]

  fedora said:

hi,

remember no test is perfect....... Just because your enterolab showed no fat malabsorption problems does not mean that you do not have any. They test one stool, not a bunch over time. Also you have evidence of malabsorption problems and digestive system damage.....B12 deficiency and lactose intolerance. So if you are up for it an endoscopy may show damage.

my 7 year old daughter has been on a gluten free vegetarian diet for over 3 months now. It is doable if you have to

Fedora,

You are right, who knows what an endoscopy will show. I'm willing to do it and I'm going to ask for it at my GI appt. It is weird that that score came out low since I'm obviously having intestinal damage with the lactose intolerance and b12 deficiency.

I know gluten-free and a vegetarian diet are possible, he's just not willing to do it. Veggie burgers are too convenient for him to pass up. I did warn him that I'm going to need a separate cabinet, cutting board, toaster, etc. so he's prepared for the changes!

[fedora]

I eat Amy's Bistro Burgers. They are vegan and gluten free. I think they are yummy.

My hubby has been a vegetarian his whole life. He does still eat his own bread, tofurky(fake turkey), and Gimme Lean fake sausages. He has his own area to make his food, keep his food, and his own cast iron. I keep most of the kitchen safe with the exception of the danger zone and his drawer in the frig. I dislike the crumby parts of the bread, but at least the fake turkey and sausages aren't crumby. Otherwise he eats gluten free canned foods and pastas, etc.

[vthuskies]

I'll let him know about those veggie burgers, thanks for the suggestion! Sounds like we'll end up having a similar kitchen arrangement as you. Too bad our cabinet space is severely lacking. I'm going to have to get creative! The fridge is going to need a good scrubbing and we'll rearrange it so my stuff is up top and he can have the rest. There's a lot of work to be done!

I also called and left a message for the pediatrician. Hopefully I hear back from her tomorrow since she's off today. Will keep you posted...