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

Enterolab Results


Guest barbara3675

Recommended Posts

Guest barbara3675

Enterolab came through for me when my doctor didn't. They did an analysis and sent results via email and I am gluten and lactose sentitive. My doctor did a blood test and told me it was negative via the phone with no offer of anything further. I actaully kind of knew that we were on the right track when my tummy didn't hurt anymore when I wasn't eating food with gluten. When I ate food with lactose it was really bad. I have a 6 year old granddaughter with celiac disease since she was one year old and my dear daughter-in-law was the one who got me started to thinking about this whole thing. My DDIL and my son are so totally vigilant about Ana's eating that she is 99% gluten-free when she is tested and you really have never seen a more healthy little girl---and of course, brilliant!!!!!!!! Now if I am lucky enough to live to be in my 80's like my mom has.....maybe I won't have all the gastro problems that she has had over the years. I hope if there are any of you that are wondering if you should use Enterolab, you won't hesitate. They are the best. I will always be so grateful for this message board because I would never have known about Enterolab and how many people have used it when they just couldn't get answers anywhere else. They send you a complete package in the mail, you do the specimen work, seal it all up and send it back via overnight carrier. I got my results in less than two weeks, but they say it can be 3-4 weeks. If you have any questions, you can email me at sundown@nnex.net. Barbara


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



Celiac.com Sponsor (A8-M):



beelzebubble Contributor

i wholeheartedly agree. i was really sick, couldn't get the doctor to listen to me, and decided to fork over the money for the enterolab tests. it was the best money i ever spent. i believe enterolab saved my life.

carrie

burdee Enthusiast

Barbara: If you did tests through Enterolab and were told you had antibodies or were sensitive to cow's milk, their interpretation probably said CASEIN, not lactose. Obviously I didn't see your test results or their interpretation, but their milk sensitivity tests look for antibodies to CASEIN, the milk protein, NOT lactose, the milk sugar.

I agree with Carrie ... what I paid for the complete package of Enterolab tests was money well spent. ;) Without my E-lab diagnosis I would probably still be struggling to eliminate gluten while not realizing CASEIN caused many of my symptoms (like constipation, sinus mucous drainage, menstrual like cramps, etc.). I had used 'lactaid' for what I THOUGHT was lactose intolerance for years, but STILL had those other symptoms after I went gluten-free. Also knowing I had the main gene for celiac convinced me that my gluten/casein/soy intolerances won't disappear. I will always have to avoid those ingredients. :o (E-lab didn't test for soy, but when I tried to substitute soy for dairy, I had symptoms similar to my 'dairy' symptoms.)

Fortunately my PC doc accepted my history (celiac disease symptoms, using gluten-free diet to relieve symptoms, E-lab results, using dairy/soy free diet to eliminate rest of symptoms) as well as my E-lab results. I recently visited her for a physical and handed her my typed 'history with celiac disease' and E-lab results. Perhaps my confident, nonhostile approach convinced her, because I didn't NEED her diagnosis. I was just informing her about celiac disease, so she wouldn't misdiagnose OTHER patients who present with 'ibs' symptoms. She also admitted that 'ibs' is a catch all label and celiac disease patients almost have to diagnose themselves by elminating gluten, rather than rely on iffy blood tests and biopsies. Maybe I just have a very receptive doc. :D

BURDEE

Happycat Rookie

Dear Barbara,

I e-mailed you the other day but I don't think you got it. I received my son's test from enterolab yesterday and did the mouth swab. I don't think we have anything to send yet in the other department. What I want to know is if you know how long can I freeze his sample for before I send it. Tomorrow is wednesday and they said it should be frozen overnight so now we have to wait.

Anyway, I should have known this would happen. I am sitting here with my chronic urticaria (hives) and now my lips are swelling, how lucky am I? ;) I was so happy when the test arrive monday morning. My son is a college student and has a job so I just hope we can pull this off!! Wish me luck!

I just received an e-mail from Dr. Fine and he said that because my son is IgA deficient that his test might pick up IgA in the stool but not likely. He did say that the test for malabsorbtion and gene test would be unaffected. He also said with an elevated IgG ( His was 115 and above 20 was postive) he is gluten sensitive and should be on a gluten free diet NOW.

Thanks for listening, :P

Lisa

taneil Apprentice

Happycat,

You can freeze the speciman for awhile. I did the same test and froze my speciman from Thursday until Monday. No problems, they just want it frozen at least overnight so it gets to them still cool. So having it frozen longer shoudn't be any problem.

Guest barbara3675

HappyCat--I am so sorry, I sent you an email giving you all the information that you requested. It must not have gone through. I sent my specimen in the day I did it, and it must have been o.k.

Burdee--You are so right, it did say casein sensitive, not lactose. I have consulted with my expert at the health food store and she is advising me. Do you have any advice regarding avoiding casein, like trigger words in the ingredient list etc? I would really appreciate it. I was very interested in what you had to say about how you felt trying gluten-free diet and then realizing that the casein was the missing piece of the puzzle. I am still so constipated and bloaty at times. I am still learning about all the things you have to do to REALLY be gluten-free and casein......I thought I was doing pretty good with the gluten-free eating, but I was misisng some things big time. I am still learning. Have to buy my own toaster for one thing. It is so good to have other people to talk to on this message board. It is just a Godsend.

I certainly would encourage anyone to go with Enterolab, they seem to be very thorough, professional and know more that most doctos where I live. It will be interesting for me when I go to my doctor.

Just as an aside, how do you make those little things at the bottom of your messages that say things like "gluten-free since 8/04" and they are in different colors and sometimes people put pictures and stuff like that. I just don't see where there are choices to do that

Barbara

burdee Enthusiast

Hi Barbara:

The website which really helped me when I learned I ALSO had to avoid casein was www.gfcfdiet.com for parents of austistic children. They use a gluten-free/CF diet to help their children control their autistic symptoms. The site lists all the safe and unsafe gluten-free/CF foods. They also sell a little mainstream gluten-free/CF product guidebook. That book also lists other sources of calcium, since eliminating dairy does eliminate a big source of calcium. Once I eliminated ALL the dairy products, my constipation, steatorrhea, sinus drainage and cramps disappeared. Those symptoms only returned when I got dairy contamination. Feel free to write me at penguinea@hotmail.com with any questions about avoiding casein AFTER you check out the gfcfdiet website. :) That will answer MOST of your questions.

About altering your 'signature' ... click on your login name. Then you will see a page with stats about you. Click on 'edit my profile' on the far right. Then you will see a page with a list of choices on the left under 'Personal Profile'. Click on 'Edit Signature'. You will see a blank rectangle in which you can insert anything you would like to add to your signature. Good luck! ;)

BURDEE


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



Celiac.com Sponsor (A8-M):



Happycat Rookie

Thanks Everyone,

After reading what you wrote about dairy and your symptoms Burdee, looks like I should eliminate it also!

Lisa :D P.S. THANK GOD FOR THIS BOARD!

Guest barbara3675

I have to say thank you also to all of you that have helped me on this particular thread. My fibromyalgia which was dogging me badly at the beginning of the summer is now confined to the area from my shoulders to my fingers and only when I am in the bed, for the most part. When I have had a hot shower and get into my day, it is totally workable.....some people have it so badly that they have to do on disability so I feel fortunate to have contolled it to this point. I have to work VERY hard as I have a small restaurant/bar and we are open six days a week. We do a lot of the work ourselves/I am 59 years old. Sure would like to do something a little less stressful!!!!!! Going to WalMart today to buy my own toaster and a few food things that can't be gotten at our local grocery store. I live in a remote part of northern Wisconsin in a resort area so having the internet to connect with the outer world is my lifeline. Thanks again....Barbara

deb Apprentice

Hi all,

Just thought I would let you know I ordered my test from Enterolabs yesterday. I emailed Dr Fine prior to ordering asking about how long a speciman would be good since I live in a rural area that does not have pick up or delivery everyday by Airborne. He emailed me back that the stool can be frozen and can stay that way indefinitely. He said they get specimens from all over the world. I'm really looking forward to some closure on this. I can't get an answer anywhere else. I started gluten-free diet over a week ago and feel considerable better until yesterday when I ate a green chili burrito. It only took 1 hour after to make me feel like crap. :(

Archived

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

  • 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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.