Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Guess I'm In The Club....

vthuskies

Recommended Posts

vthuskies Newbie
vthuskies
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
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.

B) 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 Explorer
mftnchn
Posted

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 Newbie
vthuskies
Posted
  • Author

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 Enthusiast
fedora
Posted

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 Newbie
vthuskies
Posted
  • Author
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 Enthusiast
fedora
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


vthuskies Newbie
vthuskies
Posted
  • Author

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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    3. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    4. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,263
    • Most Online (within 30 mins)
      7,748
    Elyn Joy
    Newest Member
    Elyn Joy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.