Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Testing Babies
0

6 posts in this topic

My daughter (9.5 months old) has a family history of celiac and food allergies. I'm breastfeeding, so we're both currently dairy-free (otherwise she gets eczema) and mostly gluten-free (she doesn't react to traces in my diet, and there aren't any traces in her diet). We started eliminating wheat and oats when she was 5.5 months old (which cleared up the slimy green poop that I think was allergic colitis, and a persistent anal fissure).

She's otherwise healthy - a skinny little monkey (bounces btwn 3rd and 25th percentile weight for height, but she's always been 95th percentile or higher for height), but cheerful and generally well-looking. Her eczema bothered her, but the GI problems didn't seem to make her fussy or otherwise bothered.

Her pediatrician wanted to do bloodwork for celiac at her 6 month well baby visit, but at that point we'd just gotten the green poop and bloody diapers cleared up, and I didn't want to reintroduce gluten at the same time we were introducing solids.

We were going to try barley, then test at 10 months, but 3 days in I discovered that 3 days is about as much barley as one person can eat. (We'd both have to be consuming gluten and both be tested to have any hope of accurate results, and I wanted to make sure she didn't react to barley in my diet before I fed it to her directly.)

Is there any point in testing her sooner, rather than doing dietary challenges at some point and then testing after age 2, to rule out transient gluten intolerance? I'm also playing around with just getting her gene tested, then picking a path based on those results.

Thanks!

Phoebe :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Our pediatrician said that the blood work is not incredibly accurate until after 3. My boys are 2 and he felt fairly confident the results were accruate but said the younger they are the more inaccruate it wil be. They did not do any testing on my children when they were babies and had symptoms of multiple allergies very similar to your story. One of mine had blood in his stools consisitantly. they did a colonoscopy and determined it was allergic collitis. But it still took experimenting to find out what it was.

0

Share this post


Link to post
Share on other sites

Hi, I have an 11 month old who would get diarrhea after eating wheat, barley, oats. I mentioned this to his dr. and she suggested blood tests (but did not mention he had to be eating gluten for blood tests to be diagnostic). The phlebotomists weren't able to draw blood on him. now I'm wondering what's the point? I'm reading about many people trying various and sometimes invasive diagnostics and never getting a definite answer and I can't imagine putting my son through tests which might not tell us anything, especially since he is perfectly healthy when he is gluten free. Anyone else out there debating doing diagnostics when a gluten-free diet seems to be the answer?

-Dorothy

0

Share this post


Link to post
Share on other sites

Dorothy,

The only reason I would want to get some diagnostics done-- is because Celiac is a serious disease, meaning that you must adhere to the diet your ENTIRE life. If your son's problem were just a wheat ALLERGY, and it could be, then it is likely he will outgrow the problem. The problem you would face then is, if he truly has Celiac, when he is older he might question the diagnosis, and he might sneak gluten here and there, and it is common for him to have no reaction-- then he will say, well I guess I don't have Celiac! You might then feel relieved that he has seemed to outgrow his "wheat intolerance" or "wheat allergy"...It could then take years for him to start having intestinal symptoms again, meanwhile damaging himself. I think this is the main reason I am driven to get an accurate diagnosis for my kids. I hate the idea of having to reintroduce gluten into their diet when it makes them sick. That is why I am leaning towards stool testing through enterolab. Apparently the antibodies show up in the stool for a while after removing gluten from the diet. It is a very frustrating process I know!! I am going through it right now and ready to pull all of my hair out!

Sorry, don't know if I helped any. About the testing not being very accurate before age 3-- my 2 yr old just tested positive for both IgG and IgA antibodies. I know lots of other kids have tested positive before age 3.

Phoebe, I'm not sure about gene testing-- it seems like there is argument as to whether or not you should avoid gluten if you have genes. I just don't know enough about it, so I'm not the best person to respond. What if there are more than one Celiac gene, and they don't catch it, and so you just assume that she doesn't have it, when she might?

0

Share this post


Link to post
Share on other sites

Thanks for your thoughts. Maybe I'll let him get poked another time and see if they can get any blood. Is the stool test covered by insurance? I'll have to ask his doc about it. I guess it would be much easier to have a simple test done now than have to feed him gluten later on or do a biopsy.

thanks

-Dorothy

0

Share this post


Link to post
Share on other sites




Hey Dorothy,

I don't know if your insurance will cover Enterolab. I would go look at their website, enterolab.com. Email me if you have any more questions, and I'll see if I can help.

Mel

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,697
    • Total Posts
      921,781
  • Topics

  • Posts

    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined