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

Now There Saying Acid Reflux


Guest flowermom6117

Recommended Posts

Guest flowermom6117

Ok, so now I'm scared and upset again. We seen the G.I. today, drove 2 hours in a blizzard there and back. I had high hopes that we were finally going to get the answers we have been waiting for, for 3 years, but nope doc says all test came back negitive for celiac. Instead he diagnosed my 4 yr old who only complains of gas with acid reflux. How can this be, she never spit up as a baby, never complains of more than cramps and farting too much (her words not mine).

Now what, I really thought testing would be possitve, she has a really strong wheat allergy, along with a lot of other foods. I was so hopeful. Celiac explained so many of the symptoms she was having. Now I just don't know. I know I go gluten free anyway, but do I have more testing done since I have no explaination for a lot of really scary symptoms? The main one being high fever for days with no other symptom, or the joint pain mainly her knees.

Part of me thinks I just wait and see if six months of gluten free cures everything or not. Then there is the part of me that is scared to risk another trip to the E.R. to get a temp of 105 degrees brought back down. We have been lucky that there are no lingering problems from the times she has done this in the past.

My poor child is so scared to even drive by a doctors office or hosipital because of all the time she has been stuck with a needle. I wish she was old enough to tell me exactly how she feels and what she wants.

Please someone give me advise.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

she has a really strong wheat allergy, along with a lot of other foods.

If she has a wheat allergy, she probably wasn't eating much gluten before the blood tests. I know you weren't feeding her wheat if she is allergic to it. If she wasn't eating a "full gluten diet", she likely wouldn't have enough antibodies to test positive.

I would just get rid of any little bit of Barley that might be slipping in as malt & then she will be gluten-free.

ravenwoodglass Mentor

I agree with Karen. Do get her strictly gluten free for a bit and see if stuff resolves. Being gluten free will not have any impact on any other testing. Do be sure to eliminate rye and oats also. Also be careful about CC and stuff she may play with like play-doh.

beachbirdie Contributor

Ok, so now I'm scared and upset again. We seen the G.I. today, drove 2 hours in a blizzard there and back. I had high hopes that we were finally going to get the answers we have been waiting for, for 3 years, but nope doc says all test came back negitive for celiac. Instead he diagnosed my 4 yr old who only complains of gas with acid reflux. How can this be, she never spit up as a baby, never complains of more than cramps and farting too much (her words not mine).

Now what, I really thought testing would be possitve, she has a really strong wheat allergy, along with a lot of other foods. I was so hopeful. Celiac explained so many of the symptoms she was having. Now I just don't know. I know I go gluten free anyway, but do I have more testing done since I have no explaination for a lot of really scary symptoms? The main one being high fever for days with no other symptom, or the joint pain mainly her knees.

Part of me thinks I just wait and see if six months of gluten free cures everything or not. Then there is the part of me that is scared to risk another trip to the E.R. to get a temp of 105 degrees brought back down. We have been lucky that there are no lingering problems from the times she has done this in the past.

My poor child is so scared to even drive by a doctors office or hosipital because of all the time she has been stuck with a needle. I wish she was old enough to tell me exactly how she feels and what she wants.

Please someone give me advise.

You might ask them to test her for Juvenile Rheumatoid Arthritis if they have not already done so. That would include ANA (anti-nuclear antibodies), ESR (erythrocyte sedimentation rate), and Rheumatoid Factors. Cedars-Sinai had a nice list of symptoms, you can find them other places on the web too:

Open Original Shared Link

* High fevers that tend to spike in the evening and then suddenly disappear

* Limping or a sore wrist, finger or knee

* Rashes that suddenly appear and disappear in one or more areas

* Stiffness in the neck, hips or other joints

* Joint stiffness that is worse after rest

* Sudden swelling of the joints, which stay enlarged. These joints may appear reddened and feel warm.

Hope you get it sorted out soon.

Archived

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

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.