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

Confused, Scared --in Process Of Testing
0

4 posts in this topic

my daughter has been through so much (haven't we all?)the first year of her life she was severely anemic , vomiting , hives diaherrea , rashes the whole nine yard. After testing it was concluded she was born with food allergies to eggs, wheat, chicken,corn, food perservatives and coloring. so we put her on oatmeal, barley, rice, meat and some veggies. life was ok for few months. then the monthly ear infections began. After a year of wait and see we removed her tonsils and adenoids. life is ok for a few months. then the weight loss begins. This time my doctor say don't worry. But after 2 years she has only gained a pound. Her clothing is getting bigger on her instead of tighteradn smaller.

After 2 years i couldn't bear to see her ribs and pelvic bones stick out. So I have just changed doctors and the new doctor suspects celiac. she has the stomach pains but not diaherrea. (she goes twice a day does that fall into diaherrea?) Also now she has become milk intolerant and has really itchy skin. feels like sandpaper.

I have a GI appt in 2 months but what should i do in the meantime. How many months and tests before the results come in? I feel depressed for not changing doctors sooner and impatient and scared of what will happen in the future. if it is celiac my daughter will have to give up more of her favorites. Life is bad enough without eggs , chicken and wheat-----how can i tell her now more stuff has been added to that list!!!

i just need some advice and a hug!!!!!!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

((((((((((sarahnaser))))))))))))

Hi and welcome to the board, this is a great place for support, advice and to vent!! Do not feel guilty for not changing doctors sooner, we as mothers and fathers do the best we can. :rolleyes:

As far as testing for Celiac it can sometimes take a while for a diagnosis. I hate to tell you this but she needs to remain on gluten until the testing is over. I know you must be feeling a lot of emotions right now and understand you not wanting your daughter to have to give up more of her favorite foods but I speak from experience when I say she will adjust to the diet. My daughter was SO picky before the diet and now she can't have her favs either but she has found new favs!!!

I hope you find encouragement here and know that you are not alone :)

Hang in there :D

0

Share this post


Link to post
Share on other sites

Hi Sarah. Welcome.

Maybe you can take your daughter to the emergency room, go to the GI's office and sit there until they do squeeze you in, or call around to see if you can get your daughter an appointment any sooner.

I would think that the doctor(GI) she is currently scheduled to see, could order her blood tests now (and have the blood drawn at the lab) -- there are 5 tests she needs to have for the complete celiac panel.

If she is celiac, and the villi are pretty flattened - that would explain the lack of tolerance for milk. Once diagnosed, if she goes on a gluten free diet, the villi should heal and she probably will be able to have milk (lactose) again.

Hang in there and be persistent.

Good luck.

Kim.

0

Share this post


Link to post
Share on other sites

After 2 years, you don't need to settle for an appointment in 2 months. Keep calling and bugging your pediatrician, or get a nutritionist to advocate for you. We've spent the past 5 weeks in the hospital with our son, who was also down to skin and bones. He tested positive for celiac (serum tests and biopsy both) but there are OTHER things that can be the problem, not JUST celiac, so if you don't get a competent dx soon, you can't solve the problem. Untreated celiac disease --and any potential "partner" disease---is LIFE THREATENING. As far as the cheese--everyone here will tell you that while the villi are damaged, no dairy products (that will be anywhere from 3 weeks to 3 months, I'd opt for the longer) can be digested. Pediatricians, peds GI, all saw my son and advocated waiting a little longer to see if he responded to a gluten-free diet. It took a nutritionist walking down the hall to our peds and DEMANDING he be hospitalized to get him the care he needed, and a dx that included ALL his unsolved problems. Get loud! :)

Joanna

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
      104,105
    • Total Posts
      920,382
  • Topics

  • Posts

    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that is just as bad!  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,142
    • Most Online
      1,763

    Newest Member
    adoreyou
    Joined