Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

5 Yr Old Was Positive For Celiac Now Negative, Is It Possible. Help

Sandysan2006

Recommended Posts

Sandysan2006 Newbie
Sandysan2006
Posted

I have a 5 yr old girl who was sick in 2011, hospitalized 2012 she had severe muscle weekness extremely high white blood cell. Her stomach funtion test was only at 50%.cpk,ldh, were dangerously high which is damage to her muscles. She was hospitalized for 3 months. Can celac cause this? They could not figure out what was wrong did a muscle biopsy and said that patholigy thought it was juvinile drematomyositis, but since she dd not have all the symptoms, they were unsure. So my 4 yr old at the time slowly stopped eating gluten whie in the hospital and got better. So I asked for a celiac test it came back positive and her genetic testing showed DQ2 and DQ8.

Test. Value. Range

IgG (dgp igg) 25.0.EU/ml. <4.9eu/ml

Iga. ( dgp iga). 8.3eu/ml. <6.1eu/ml

Iga Elsa( ttg iga). 22.0 u/ml. <10.3 u/ml

Iga ifa (ema iga). Positive

Total serum iga by nephelometry (toal iga). 81. 3-13 yrs 41-395 mg/ dl

They did do a endoscopy negative. The hospital said they believed all her problems cam from celiac, she got of gluten and got better and is normal now.

But, we moved to another state had a follow up with new gi, put her back on gluten because new doc said the endoscopy had to be positive. Now 5 yr old ran a low grade fever, stomach ache, and cough the whole 9 weeks on gluten gave her only one slice of bread a day. We get results back endoscopy is back. Negative. All blood work negative! Is this possible. I truly belive my daughter has celiac and will not give her gluten. How can a child be hospitalized, diagnosed and then some one else say no she's fine when I know she's not. Every time she has gluten she starts coughing and then the lw grade fever if on it a few days. I have given her gluten and she always gets sick. New doc says put her back on gluten, you should be happy. I asked how can her blood tests now be negative she said she did not know. I just want an answer. I want one advise. What do you think, does it take longer or more gluten for some people to test positive.

Thank you so much.

Sandra

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


stanleymonkey Explorer
stanleymonkey
Posted

If she was off gluten for a while 1 slice of bread for 9 weeks may not be enough.

I don't understand why they won't accept the diagnosis of the er. Perhaps you could get the, to get in touch with your new doctor. It's like being diagnosed with cancer, having chemo, then the new doc saying I see no tumor after your 6 months of chemo so you never really had cancer to begin with.

Get all the medical records letters etc for your new doc and if he won't accept the diagnosis get a new GI. Some docs can't think out of the text book.

frieze Community Regular
frieze
Posted

if I used the adjective I wanted to, I probably would get a reprimand.....your new doc is the hind most part of a mule.  get a new one, asap.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Positive blood tests, celiac genes, those symptoms and a diagnosis - looks like celiac. The biopsy is losing currency as the main diagnosis, and there is every chance that there was not enough gluten to get the antibodies high enough for the blood tests (there is a lot of debate about how much and how long is enough for testing).

The positive in your story is that if the second round of blood tests were negative then you have been doing well with the gluten-free diet.

You will need to educate your doctor or get a new one by the looks of it.

It sounds like your Mommy instincts that something was wrong are spot on.

Ollie's Mom Apprentice
Ollie's Mom
Posted

I'm with all the PPs.

Get your daughter back on the gluten-free diet that you know she needs, and find a new doc ASAP. Just because this one says she doesn't have celiac doesn't mean it's true, and it doesn't negate her previous diagnosis.

What brought you to see this new doc? New /different symptoms? Or you just wanted your celiac child to be in the care of a GI?

Sandysan2006 Newbie
Sandysan2006
Posted
  • Author

I'm with all the PPs.

Get your daughter back on the gluten-free diet that you know she needs, and find a new doc ASAP. Just because this one says she doesn't have celiac doesn't mean it's true, and it doesn't negate her previous diagnosis.

What brought you to see this new doc? New /different symptoms? Or you just wanted your celiac child to be in the care of a GI?

We moved from California to Vermont, her old G.I. just wanted me to make a appointment with one in vermont incase something were to happen we would have one. we are keeping her off gluten. It's just so frustrating how the doc said " she's fine don't worry , put her back completely on gluten and just keep your eye on her." Ugh, upsetting but we are going to get a second opinion, no matter what the outcome, I know her first diagnoses from childrens hospital in Los Angeles is correct. The doc made me feel like I am the doc, I am right, that's it. No matter how I asked she was right i was wrong.

Thanks everyone.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.