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 For My 3 Y/o

wonkabar

Recommended Posts

wonkabar Contributor
wonkabar
Posted

Hi! I got Zachary's results from Enterolab tonight. He was already on a strict gluten-free diet for 2 1/2 months prior to sending in his stool sample!!! He also tested positive for one main gluten sensitivity/celiac gene as well as one non-celiac gluten sensitivity gene. According to Enterolab, having two copies means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity or celiac disease may be more severe. Well, this all certainly makes sense!! BTW-his labs (blood) came back negative while he was still on a regular diet...go figure. :huh: In addition, he showed a sensitivity to casien which was a little surprising considering he doesn't show any overt gi symptoms to cow's milk. But, I do understand that properly digesting dairy is an issue for many people until their tummy heals. He's, unfortunately, allergic to soy so we'll have to try rice milk.

For those of you who are wondering about the quality of the lab report, we were quite pleased with the details and explanation. It was, for the most part, "reader friendly", and the results were available in less than two weeks. Although it was expensive, it was a worthwhile investment...I'm happy I did it. I'm going for my annual exam mid-July and plan on asking the doctor to order a full Celiac Panel along with the routine labs. My husband is going to get an Rx from his pcp as well for a full panel. Zachary's issues with gluten came from somewhere! One of us, or possibly both, passed this along to him. :o Poor little guy! We're just thankful we figured out what was wrong with him sooner than later. We never thought we'd be this happy to see a solid poop! :D

--Kristy

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

Fecal Antigliadin IgA 46.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 23 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 71 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 24 Units (Normal Range <10 Units)

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

It's nice to have some more solid answers isn't it. I had my family tested by enterolab also and was pleased with them.

shai76 Explorer
shai76
Posted

My sons been on rice milk for a year now. He's 2. He's done real well on it. The Westsoy brand does not have gluten in it that I know of. The Rice Dream brand does, so be careful with that.

Guest nini
Guest nini
Posted

Lundberg has a gluten-free rice milk...

my guess would be that both parents have it, esp. if he's got two diff. genes for it... Even if the testing from the standard labs comes up inconclusive, I hope you consider making your entire house gluten-free for simplicity's sake. (I wish my husband would go gluten-free... I think it would help him)

CarlaB Enthusiast
CarlaB
Posted

I, too, was very happy with Enterolab. I'm glad you got answers. I was surprised by my high casein score and ignored it for a while. I didn't get completely better until eliminating dairy. Many celiacs have a problem with lactose while their intestines heal, but casein is the protein in milk and is considered to be a permanent intolerance like gluten. Unfortunately, it's not something that goes away like lactose intolerance does.

wonkabar Contributor
wonkabar
Posted
  • Author
...but casein is the protein in milk and is considered to be a permanent intolerance like gluten. Unfortunately, it's not something that goes away like lactose intolerance does.

I didn't realize casein was a permanent intolerance . Thanks for the info. I'm just glad we're finding all of this stuff out now while he's 3 versus when he's 13; he doesn't know any better at the moment! We hope this will just be so much of his life as he gets older that it'll be second nature. We'll see what happens when he's a teen!

--Kristy

Guest Robbin
Guest Robbin
Posted

Kristy, I am so glad you finally got some answers and the little guy is doing better. I am a big fan of Enterolab and recommend them to anyone who has symptoms but negative blood work. Can your son have nuts? If so, almond milk is excellent. It is better tasting than the rice milk and I use it for myself. My son will only drink rice milk with chocolate in it. (Unfortunately, he can't have soy or almond milk) Then again, he IS a teenager and that proves your point that it is better to get them used to different foods when they are young :)

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

Celiac.com Sponsor (A8-M):


wonkabar Contributor
wonkabar
Posted
  • Author
Can your son have nuts? If so, almond milk is excellent. It is better tasting than the rice milk and I use it for myself. My son will only drink rice milk with chocolate in it. (Unfortunately, he can't have soy or almond milk) Then again, he IS a teenager and that proves your point that it is better to get them used to different foods when they are young :)

Hi! Zachary is allergic to nuts among other things. He loves chocolate milk, though. So I'm sure I can get him to drink the rice milk with chocolate in it. (He used to be a huge fan of Ovaltine.) Is Hershey's Syrup gluten-free??

Speaking of chocolate milk, here's a funny little gluten story to share... As bad as Zachary's poops were, my husband and I would always comment on how much worse they seemed to be when he ate chocolate chip pancakes (bisquick) and drank chocolate milk (ovaltine)! :blink: What we thought was that he had an allergy/sensitivity to chocolate!! :huh: This was, obviously, before our concerns about gluten resurfaced. We never put the reaction with the Bisquick and Ovaltine together with gluten until we found out he WASN'T allergic to chocolate...duh! We were just giving him two of his favorite things, and unbeknownst to us it was wrecking his stomach! Poor little guy!!

penguin Community Regular
penguin
Posted
Hi! Zachary is allergic to nuts among other things. He loves chocolate milk, though. So I'm sure I can get him to drink the rice milk with chocolate in it. (He used to be a huge fan of Ovaltine.) Is Hershey's Syrup gluten-free??

Speaking of chocolate milk, here's a funny little gluten story to share... As bad as Zachary's poops were, my husband and I would always comment on how much worse they seemed to be when he ate chocolate chip pancakes (bisquick) and drank chocolate milk (ovaltine)! :blink: What we thought was that he had an allergy/sensitivity to chocolate!! :huh: This was, obviously, before our concerns about gluten resurfaced. We never put the reaction with the Bisquick and Ovaltine together with gluten until we found out he WASN'T allergic to chocolate...duh! We were just giving him two of his favorite things, and unbeknownst to us it was wrecking his stomach! Poor little guy!!

The milk chocolate flavor of ovaltine is gluten-free, but I think it has casein. I called the company in March and it's a-ok for us. :)

As with all other processed products, beware of cc. I haven't had a problem, though. It's a great way to get some extra nutrients.

wonkabar Contributor
wonkabar
Posted
  • Author

Fortunately Zachary has never had failure to thrive or issues with malabsorption. He's always been way above the 50th % in weight since he was a baby; that's why it was so difficult to convince the jack-ass ped gi that something WAS wrong with him! :angry:

Last year we started having Zachary evaluated to address some sensory issues and developmental delays...he was an 32 week preemie. I'm a self-contained special ed teacher, so I was concerned that we were possibly looking at a mild PDD-NOS Dx for our then 2 y/o. Much to our relief, it was not that at all. It was sensory integration dysfunction with a processing delay being the root of the problems. (He just started pre-school and is doing fine, BTW! :))

Anyway, there IS a point to this...when I was concerned about the PDD-NOS Dx we put him on a strict gluten and casein free diet for a month. WOW did we see a change in Zachary. His vocab increased by 40+ words in one week, he was sleeping through the night, he had a "calmness" about him, wasn't crying/yelling all the time, was able to focus more easily, could follow simple commands and not to mention all of the gi symptoms cleared up just like that! :blink: After he had a neuro-developmental evaluation and we were told that he had a processing delay, not PDD-NOS, we were elated but asked how she rationalized him doing so well on the gluten-free/casein free diet. She didn't know....well now we do! He's obviously got issues with gluten. Better late than never, huh?!?!?!? I have known something was wrong since he was a baby. Maternal instinct is not a force to be reckoned with!! :D

--Kristy

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. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.