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

My 16 Month Old Daughter Got A Borderline Positive
0

9 posts in this topic

Symptoms started in June. My daughter had a diaper rash for two months, we tried everything to make it go away and then for 10 days things got crazy with pooh. At the end of ten days it was wheatgrass green and smelled of dead fish. Her doctors office told me I wasn't changing her diapers enough and then that she probably just had an intestinal infection and to feed her toast. Anyhow, long story short, my daughter and I went gluten free (gut instinct that wheat was the issue for her and I was still nursing). her rash disappeared and everything else returned to normal. I was amazed at how fast things cleared up and how much more happy she was as well!

After 2 months of being wheat free they did blood work. Wheat allergy came back negative so her Doctor told me that she could eat wheat (did NOT trust this) and got celiac back yesterday (i guess they forgot?) and it was borderline positive. I was told again, that it was probably fine to feed her wheat. I'm changing doctors after yesterdays visit but my question is: How accurate would the blood work be after being gluten free for 2 months when the blood was taken and what does borderline positive mean?

I'm still planning on having a gluten free household but should I follow up on this blood work for better knowledge of whats going on?

The other issue is that we live in a rural area with only one pediatric office and to find another would be almost 2 hours away. Resources are limited

Edited by ChristinaPro
0

Share this post


Link to post
Share on other sites


Ads by Google:

If she's borderline positive AFTER 2 months gluten free, I would suspect her to be FULLY positive if you were't gluten-free at the time of the test. I would not get any more testing, you have enough. A positive is a positive especially if there was major improvement with changing her/your diet!

I would be sure your next Dr. is willing to write a formal dx based on the past blood work and the improvement when gluten was removed from her diet. This will make it possible to get a 504 plan or other accommodations when they may be needed in school in years to come!

Great job on finding it so early! Many kids suffer for years before they are dx. You rock Mom!!! Keep up the great work!

1

Share this post


Link to post
Share on other sites

Absolutely - if she got a positive after being gluten free for so long, I wouldn't want to know what her scores were before that. New doc is DEFINITELY in order, as your current one, AGAINST TEST RESULTS, is telling you to make her sick.

1

Share this post


Link to post
Share on other sites

I agree with pp's. Positive after 2 months gluten-free plus resolution of symptoms on gluten-free diet would be enough for me.

If you need a diagnosis, perhaps you could see about getting a referral to a celiac specialist, even if it is a few hour drive away, so that you get that official celiac diagnosis. Then you can march in toa doc office closer to you for more regular care wwith a diagnosis in-hand.

Good luck, and you must have awesome mommy instincts!! :-)

1

Share this post


Link to post
Share on other sites

Everyone is giving you good advice and you are right to follow your instincts. A positive is a positive . . . the ranges are there for a reason and if she is out of range, the test is positive. The fact that she was already gluten free for two months makes it much less "borderline" - her numbers must have been very high to still be getting a positive test. Your doctor clearly does not know enough about gluten intolerance and celiac disease.

Please try and find a doctor who will diagnose her based on her blood test and improvement on the diet. She has years and years of school, summer camp, college dorms, etc. that she will need help navigating safely. Some schools won't comply without a doctor's diagnosis.

Cara

1

Share this post


Link to post
Share on other sites




Thanks everyone! It's been so frustrating dealing with her doctor. I mean, who wants to argue that your child has celiac but that's what I like right now. Instead of support and advice, I feel like they think I'm nuts.

Anyhow, thanks for te responses!

1

Share this post


Link to post
Share on other sites

I am so glad you found out so early for your daughter. Now you can really make a difference for her life! I hope you both continue to see improvements.

Diana

0

Share this post


Link to post
Share on other sites

Oh my! We are at children's hospital because my daughter has RSV that turned into pneumonia They have not listened about her celiac at all whicj i Have brought crackers and such to the room. Anyhow, I have been told by three doctors that she doesn't har celiac because her wheat allergy blood work came back negative Sorry just had to vent. I don't know where to go for answers sometimes..... They look at me like I'm crazy to even bring it up

0

Share this post


Link to post
Share on other sites

I would look at them like they are crazy and say, "What does wheat allergy have to do with celiac disease?" They are two independent things. If they don't know that then you can't trust what they say.

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
      104,142
    • Total Posts
      919,559
  • Topics

  • Posts

    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,175
    • Most Online
      1,763

    Newest Member
    GMO Poisoned
    Joined