• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
  • Celiac.com Sponsor:
    Celiac.com Sponsor:

So Many Questions
0

2 posts in this topic

I will try to keep this post from being very long but I also feel like everything stems off each other so that will be hard. I really need some help though please!

My 15 mos old was diagnosed several months ago as failure to thrive. We spent all summer doing many tests with a GI and did an endoscopy in July....GI was convinced she had Celiac. She is DQ8 positive but everything else including the endoscopy have come back negative. My DD was not gaining weight, has a very distended belly, and was pooping 4-7 times a day. After the endoscopy we decided to try a gluten free diet as the GI threw his hands up and didn't know what the problem was. He laughed at me when I suggested just trying a diet change (yes, we have fired him). He doesn't believe in just intolerances....it's either Celiac or nothing. She's been gluten and wheat free for 5 weeks now and at her 15 mos check up last week she had gained 2 pounds and grown 1 1/2 inches....huge growth for her! She also went from pooping 4-7 times a day to only 1-2 times. Ped was thrilled and said to keep her gluten free.

She had a seizure back in March (no answers why). She has had questionable seizure like behavior since (waiting on EEG results and is scheduled for a MRI). She was hospitalized 3 weeks ago because her blood sugars crashed to 43. Drs finally began to take me seriously after that. She was diagnosed with ketotic hypoglycemia. Endocrinologist doesn't know if it is caused because of an underlying issue of "Failure to Thrive" or something completely separately.

The last 2 weeks she has been giving me such a hard time eating ANYTHING. She used to have a huge appetite and would eat anything and everything (which also didn't make sense because she wasn't growing). I feel like removing gluten is definitely helping but I still feel like there's a problem. Here are my questions.....Is there such thing as just a gluten allergy/intolerance or does it mean she has Celiac? I have removed gluten/wheat but haven't gone strict with worrying about cross contamination or trace amounts in things.....can this be affecting her not wanting food at all? Her belly is still so distended...how long would this take to get better? Even things that used to be her favorites/treats she is fighting me on. I've heard that removing gluten can temporarily make people sensitive to dairy....could this be it? In the last week she has lost over a pound of the 2 pounds we worked so hard to gain :( Per the advice of the nutritionist we saw in the hospital she is also on Pediasure which I don't offer until I've spent a good deal of time trying to get her to eat solid foods.

I'm open to any suggestions or tips! We are in the process of getting a new GI now. I just don't know what to do. Obviously when she doesn't eat it also makes her blood sugars low which can't be happening.

TIA!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.

1

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
      107,068
    • Total Posts
      934,116
  • Member Statistics

    • Total Members
      64,660
    • Most Online
      3,093

    Newest Member
    jsu
    Joined
  • Popular Now

  •  

  • Topics

  • Posts

    • No, I won't swallow it! Right now, the wound is not really open, and cold relieves the pain more than warmth, so I'm not sure how much good salt water will do. I guess I get to anticipate the day when it does open, if it does. O goody. The pain is incredible. And I'm very hungry because I'm not eating enough. This really sucks, I must say. Thanks for your other words. Yeah, it was the citrus, and the stress, and some sugary things probably did not help either. Ugh.
    • If your blood tests do come out as negative, and they might, you can ask for genetic testing to rule out celiac and an endoscopy to check for damage.  I was in a similar situation years ago. I was gradually getting more and more tummy problems, a friend suggested cutting back on gluten and bam, I felt better when I did. So, when I finally was able to find a doctor who was willing to believe I didn't just have IBS, I already knew that if I ate gluten I had major diarrhea problems and pain... so went basically gluten free. I told that to the doc and he didn't believe me... but my blood tests all came back negative. Then he did the genetic tests to rule out celiac... they came back positive. Then he did an endoscopy and found damage and diagnosed me... and sent me to a dietitian who knew less about going gluten free than I did. I've been extremely careful since then. 
    • Weak positive means you should have an endoscopy done (with several biopsies) to see if you definitely have celiac. You have to continue eating gluten until the testing is done. If the biopsies don't confirm celiac you can always try a strict gluten free diet for a couple of months to see if you feel better.
    • They offer gluten free buns at $2 a pop.   I get the grilled chicken sandwich w/gluten-free bun and apple slices.  I only put lettuce, tomato, and onions on it.   Tough keeping the bun from falling apart.   I don't have severe symptoms so can't say for sure if I ate all gluten-free.
    • I've had them a few times and don't think I've been gluten-ed.   Not bad when you can find them.   They are in a sealed bag.
  • Upcoming Events