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

Very Confused
0

5 posts in this topic

Hi,

First off, my name is Jessie and I just found the website tonight. I am very confused! I have a 21 month old son who has had serious health issues for about the last year. Starting with Upper Respitory infections, horrible diahhrea, 2 bouts of pneumonia, Benign Transient Hyperphosphatasemia, IgA deficient, IgG too active, etc etc etc. About a month ago he developed an AMAZING appetite. He eats more than his daddy! He looked like he was getting skinnier to me so on Friday we went and had him weighed. His growth had started to slow down when he started getting sick but he hasn't grown any longer or gained any weight since October. We are running stool cultures and have a followup appointment with his Ped to discuss those results and what might be going on.

I work at a medical clinic and one of my nurse practitioners suggested Celiac to me. After reading a little bit about it, it just sounds like Joshwa. EVERYTHING sounds like him. My BIL has Chrone's disease so is that a first degree relative?

My poor baby has had so much testing done in his life that he cries when someone comes at him with a stethoscope. I don't think that we're willing to do a biopsy at this point. Does anyone have any suggestions for non-invasive testing?

If you've read this far, thank you. I appreciate any help that you could throw my way. I promise that I won't be this long winded all the time! :rolleyes:

0

Share this post


Link to post
Share on other sites


Ads by Google:

There are stool tests avaiable. They are through enterolab and you can get information on them at their website. www.enterolab.com

There is always a celiac blood panel.

My son just had an endoscopy and biopsy done but not the blood test. The problem is that the biopsy can miss a spot of damage as it can be spotty..

The tests from enterolab are not generally accepted by most doctors out there as they are relatively new. But Dr. Fine is celiac and has pretty much dedicated his professional energies to helping those with celiac, and those who think that they have it..

0

Share this post


Link to post
Share on other sites

I've used Enterolab, and think very highly of them. We took my now nine month old grandson off milk after he had diarrhea, stomach cramps, severe diaper rash, and lots of distress. I am gluten sensitive and allergic to milk and dairy, and I sent for the full spectrum stool test from Dr. Fine ($368) and learned that our grandson is also gluten sensitive and allergic to milk and dairy. He has only eaten grains and milk by accident, and the consequences were so awful--crying, fussiness, inability to sleep, stomach distress, etc. for three days. He is now growing normally and is such a wonderfully happy little boy. I highly recommend the Enterolab test kit. At Christmas I gave the simple gluten sensitivity test kit to my husband, brother, sister, and three grown children ($118 each with 10% off each kit after the first) and we have since learned that my husband and brother are NOT gluten sensitive--yay! Theirs didn't test milk or dairy or if they carry the gene, as did my grandson's. We are daily becoming more aware of how to live with Celiac. I hope that you, too, find relief soon. My heart goes out to your little boy and you all. Welda

0

Share this post


Link to post
Share on other sites

Hi Welda in reading your post you talk about the enterolab and testing that they do. My Lily's GI doctor told me that there isn't a test to test for dairy protein defifiencies is this not true? I'm just curious? We eliminated her dairy and Lily has maintained a low iron level but it hasn't dropped to transfusion level so he said going by the process of elimination he was pretty sure that was the cause. Then she was sent for the celiac blood panel which came out positive GI doctor told me that it also can come out possitive if there is a dairy issue. I found this to be inconsistent and thought perhaps you had some knowledge of this?

Heather

0

Share this post


Link to post
Share on other sites

Heather, Try reading the article on Dr. Fines testing on Celiac.com. Many doctors seem to be resistent to his testing. But it seems Italian researchers are taking his testing very seriously. The article is "Italian Researchers Develop Ultra-Sensitive Intestinal Anti-Tissue Transglutaminase Celiac Disease Screening Technique. Many-many Celiacs do develop a problem with dairy products. But many of us also heal and can eventually use dair products. I did have to eliminate them for about 6 months. Now, after several years, I can use most dairy products, except to drink cow's milk. I use goat milk without a problem. But if you have a problem with caseine, then you should eliminate dairy altogether. That seems to be what Dr. Fine tests for.

Welda, Try reading the above article. Sounds like a really good start to early diagnosis. Shirley

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
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,417
    • Most Online
      1,763

    Newest Member
    Suzette Porter
    Joined