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 Please Advise
0

6 posts in this topic

My 3 yr old got a referral to see a pediatric allergist today.

I suspect she has issues with gluten.

I need advice on what I need to ask for when we see the allergist. What do I need to know and what do you wish you knew when your kids were getting tested.

thanks

Shannon

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hmm, there are differences between celiac disease and gluten/wheat allergy. It seems to me that digestive issuses are more common with celiac disease and for that you might consider a gastroenterologist rather than an allergist. Whereas skin issues and other allergy type reactions (hives, breathing difficulty etc.) are more common with wheat allergy, and that would be for the allergist.

What kind of indicators does your daughter have? That might determine what kind of specialist you need to look for?

Also, the only thing our gi specialist did for us was to confirm our peds dx. After that we never really saw him again, and all our checkups go through the ped, so if yours is willing to do the testing for you, you may not need a specialist at all.

0

Share this post


Link to post
Share on other sites

Shannon, When my newborn grandson began having severe reactions to his milk formula, we changed him to soy, and I immediately sent away for Enterolab.com's "full spectrum" home test kit, which tests for whether he carries the Celiac gene (I have Celiac Disease and allergies to milk, dairy, casein, whey, egg whites, and yeast), is gluten sensitive, and is allergic to milk and dairy.

I sent his stool sample and gene swab from the inside of his cheek back to the lab by FedEx, and within 3 weeks they emailed that he carried a copy of the gene for Celiac, was gluten sensitive, and was allergic to milk and dairy.

Since then my husband's and brother's tests have come back negative, but my sister does have Celiac. I am working to get as many people in the family tested as possible. The full spectrum test runs $368 and the gluten sensitive only test runs $118. I trust Dr. Fine to be thorough, since he also has Celiac.

Hope this helps. Always, Welda

0

Share this post


Link to post
Share on other sites

This does help.

Ok here is the story, pull up a chair cause it has been a long three years.

My daughter was born and I exclusively breastfed her. Well she had what the Dr diagnosed as colic. I thought that was bunk and knew there had to be a reason for the gas and crying. My dh has a family history of dairy problems. Lo and behold when I was off of dairy for about two weeks, she was better. So no dairy...fine I can live with that. I went to soy milk.

For a year, it was soy milk for me (still breastfeeding) and no dairy for either of us. Shortly after her first bday, I started noticing signs of food allergy again. Ring around the anus, crying fits and greenish stools. What in the heck could it be??? I was so vigilant. Well after she had a reaction to stir fry one night, I realized it was soy. No more tofu or soy milk. Fine, can live with that.

Well she has always been small. I am a small person (cultural) and my Dh is a small person. No big deal. So she is petite.

But there are other signs that are alarming me... she has diarhea often. She has some pitting at the gumline and chipped a tooth. My Dh and I both have VERY VERY good teeth, we eat a primarily whole foods diet and she does not get candies or typical junk food as I will not let her have artificial colorings in her food. She weighs 26.5 pounds at 3.5 years and is 37.25 inches tall. She is also cranky and says her belly hurts.

I am not sure if the belly thing is true, i think it is sometimes. She has been on this "ooh I am so sick" parade when she has to do something she does not want to. I know part of it is show but I am not convinced that ALL of it is show. She is a very lively and imaginative child.

I am going to ask the allergist for a celiac panel. I need this to come from a Dr. who will gain the respect of my Dh's family. My SIL has a masters in Nutrition, so they all think that my daughter has these problems because she does not get enough calcium from dairy in her diet. I love them very much but they do not believe that she has a problem. Not many of the family members do. My mom let me know that they are freakin laughing at me behind my back. GRRRR!!!!!

Many of them are diabetic, some have died from unexplained kidney failure (with diabetes). UGH!!!!!! anyway, that is the end of my rant.

I know what tests I want done and the doctor is simply a tool for getting them.

thanks again

0

Share this post


Link to post
Share on other sites

Hi

I have a five year old she weighs 35 lbs. I had the same problem no one would believe me when I said she just wasn't right. I continued to take her to the doctors after many visits to the doctors they did a blood test for her it came back positive for celiac. I wish you all the best it took me a year to finally get her diagnosed (two blood test, both positive and a biopsy later) they discovered her Villi was completely flat. Ronnis's symptoms:no weight gain, white floaty stool, diarehea,vomiting, fevers, muscle and joint pain and black rings under her eyes. I hope this information helps ask your doctor for a blood test.

Hillary

0

Share this post


Link to post
Share on other sites




Thank you Hilary!

I know what I want and wont stop till I get it.

Our consultation appt is in 2 weeks and I cannot help but to cut down on the gluten foods.

I know I am not supposed to.

UGH! I am so confused. We eat a VERY healthy diet. I am the "wholefoods freak" in our family and think that I provide very well for my families diet. But all of this is really making me doubt myself.

I have a hard time getting dd to eat and today we went to a bday party. They had hotdogs. She has not had bread in a very long time. well she snarfed down this HUGE nathan's beef hotdog in NO time. She behaved as if she had not eaten in days. I almost wanted to cry. We do not eat hotdogs here because I cannot bring myself to buy processed meat. But now I am second guessing myself.

My mother in law insists that it could be that we eat too much fiber. I am just so confused about food anymore. For a moment, I wondered if perhaps I made "normal" kid food she would eat it. I mean, am I doing her a disservice by giving her nuts and huumus with veggies as snacks???

I hate this and I feel like I am failing my daughter. I just want some answers.

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
      103,647
    • Total Posts
      918,462
  • Topics

  • Posts

    • Positive Biopsy, Negative Blood Tests
      BTW, all first degree relatives of celiacs are supposed to be tested for celiac every 2 years in the absence of symptoms -- immediately if symptoms present. Your kids, your parents & all siblings should be tested. And that goes for your brothers kids too.
    • Positive Biopsy, Negative Blood Tests
      I agree completely with cyclinglady! Do you even know that there is such a thing called silent celiac? No symptoms at all but the villi are damaged.  I see you joined in 2009. Why? Is that when your brother was diagnosed? IMHO you need to do a lot of research & find out just exactly what you're risking. 
    • Positive Biopsy, Negative Blood Tests
      What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!   Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)? Ugh!   Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?   Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised. Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of mis-informed doctors.  At least it was not stupidity on my part.   So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage -- like a parasite, milk, or something......even more sinister! Good luck!  
    • Really, Really Foul Breath Post-glutening?
      In addition to eating gluten-free, I attribute the following to knocking out my bad breath once and for all: 1. SmartMouth Activated Mouthwash (this is what really did it for me!) 2. Flonase Nasal Spray 3. Dr. Tung's Tongue Scraper 4. The obviously brushing and flossing twice daily (goes without saying).    
    • Positive Biopsy, Negative Blood Tests
      I went in for an endoscopy to find out if something from my stomach/intestine was causing my bad breath.  A biopsy during that procedure revealed that I had Celiac.  I thought it was strange since I ate pizza, pasta, and other bread/gluten items almost every day without issue, so I decided to confirm the biopsy result with a blood test. I took the blood test twice (once on a high- and once on a low-gluten diet) and it came back negative both times.  I just assumed someone at the earlier biopsy lab must have messed up my analysis or accidently mistaken someone else's biopsy for mine, but after reading this thread it seems like my initial biopsy might have been correct all along. My doctor suggested doing another endoscopy, but I didn't want to foot the bill for that.  Also, my older brother has Celiac which was confirmed by both a biopsy and blood test. Eating less gluten did seem to help a little with my bad breath, but SmartMouth Activated Mouthwash along with Flonase nasal spray and a Dr. Tung's tongue scrapper really did the trick to solve the bad breath issue. I'm just assuming I have Celiac and eating "gluten conscious" until my next endoscopy in about 10 years. If that biopsy comes back positive again, then I'll be strictly gluten-free.  I'm just glad I don't have many symptoms.      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online