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
      104,657
    • Total Posts
      921,628
  • Topics

  • Posts

    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
    • Research Celiac Ataxia for potential diagnosis. Look at Milk and dairy for potential head and sinus related issues.  I stopped dairy and I can breathe now! Saturated fat may also be a problem, but it's mostly dairy!
    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,657
    • Most Online
      3,093

    Newest Member
    pablito
    Joined