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

Looking For Answers


guitarpicker37

Recommended Posts

guitarpicker37 Newbie

I've been reading everything that everyone has to write and it has been so helpful...My 5 year old son started developing ataxia in February of this year and has gotten much worse...We started seeing a neurologist in March to which, after an MRI of his brain, they found "white matter" in his cerebellum. His neurologist was pretty quick to lean towards ALD (adrenoleukodystrophy) and ordered a whole lot of blood tests, to which all came back negative for the "big" diseases...We were also seeing a GI doctor who ordered the "celiac panel" blood test, yet again another negative result...I pushed for him to give him the endoscopy last week and on Monday he called me to tell me that the biopsies were negative but the was an abnormality in the scope but he was quick to rule out celiac... He said there was no way possible of this being celiac!!! Please tell me what you all think about my little guy's symptoms:

1) had severe colic as a baby

2)projectile vomitted until about 2 years old

3)started throwing up since then from time to time grayish matter

4)complains of tummy aches especially after any kind of pastas

5)been at 36 pounds for the last year and is in the lower 25% for his age group

6)rash on buttocks from time to time (dermititus herpiformitis?)

7)foul smelling hard, large, and light colored stools

8)constipation all his life until last month when his GI doc put him on Glycolax powder (now he poops everyday!!!!YEAH!!!

9)of course, as I've mentioned, white matter in the brain

10) and the severe gait instability

As of Monday I put him on a gluten free diet and I hope he gets better...I've been taking everyone's advice on this website and I'd rather trust experience over education any day...Thanks in advance for any insight that anyone has for me..As you all probably know, this little angel is my world and it kills me to see him struggling walking while the doctors try to look through their manuels to try to come up with something while ignoring the sympthoms that he has....thanks again, Terry


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Terry, a gluten free diet can not hurt him and you may just be surprised at the results. I think you are on the right track. Good luck!

RiceGuy Collaborator

The colic reminds me of candida, and I believe the abnormal gait suggests B12/magnesium deficiency. Still, a gluten-free diet may indeed be just what he needs. Time will tell I'm sure. Do keep us posted!

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,810
    • Most Online (within 30 mins)
      7,748

    rdwells
    Newest Member
    rdwells
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh 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.