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

Can Someone Tell Me If This Sounds Like Celiac...

HeatherG

Recommended Posts

HeatherG Rookie
HeatherG
Posted

My daughter will be 7 years old in July. She has had stomach problems nearly her whole life. She had terrible constipation (10 -14 days between BMs) often not able to go at all without an enema even when she was a 100% breastfed child. We started treating it with month after month of laxatives that really didn't work. 2 to 3 times the adult dose and it just barely kept us from having to give her enemas. She had constant respiratory issues and sinus infections. When she was 18 months old my ped decided to go ahead and run a celiac panel - basicaly he was running out of ideas and GI guys told me I just needed to punish her when she wouldn't poop (nice). Here are the results from 18 months of age:

IgG was 89 which is hugely high

IgA was 10 which is normal

tTG IgA was 1 - again very normal

From this they told me she didn't have celiac and that the IgG didn't mean anything. They did do a suction biopsy which was negative but they said it wasn't very accurate for babies.

Fast forward 5 years - the symptoms have gotten no better. She is in constant pain. She's being diagnosed with reflux and a slow gut. Nothing seems to help. No one has any solution but constant laxatives which just makes her sick and unless I give her lots of exlax it doesn't help anyway. If I give her enough laxatives to help the cramping is so bad she can't get off the couch. Her reflux is bad too. I know it's all connected but I'm just at my wits end. She can't eat without pain so she often doesn't eat at all.

I don't know if it's related but in October she had horrible joint pain that they couldnt' diagnose and could barely walk for 2 weeks. Usually she's a very active girl so that was wierd.

Do you think I should pursue the celiac angle again or does it sound like something else. I can't get anyone to do anything but say 'Give her more laxatives'.

Help!!

Thanks

Heather

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

Is she still consuming gluten? If so, then insist on the full Celiac panel which is 5 tests.

mommida Enthusiast
mommida
Posted

Yes. Those symptoms can be Celiac or gluten intolerance. Get the blood test panel done as soon as possible, while she is still eating gluten! Have the endoscopy with biopsy. If all those tests are completed and are negative, start the gluten free diet anyway.

L.

Matilda Enthusiast
Matilda
Posted

..

tarnalberry Community Regular
tarnalberry
Posted
...

Here are the results from 18 months of age:

IgG was 89 which is hugely high

IgA was 10 which is normal

tTG IgA was 1 - again very normal

From this they told me she didn't have celiac and that the IgG didn't mean anything. They did do a suction biopsy which was negative but they said it wasn't very accurate for babies.

...

I don't know if it's related but in October she had horrible joint pain that they couldnt' diagnose and could barely walk for 2 weeks. Usually she's a very active girl so that was wierd.

Do you think I should pursue the celiac angle again or does it sound like something else. I can't get anyone to do anything but say 'Give her more laxatives'.

Unfortunately, the testing that was done was incomplete in such a fashion that you cannot say that she doesn't have celiac. A number of celiacs are IgA deficient, which means that *all* of the IgA antibodies are low, and can't be compared to standard numbers. Essentially, those with IgA deficiencies are playing with a short deck at all times.

Assuming that she is still consuming gluten, I would encourage you to get her retested with the FULL celiac panel, including a total IgA test, so that you can determine if she is IgA deficient. (Quite frankly, I would suggest that the fact her doctor didn't test that, even as a follow up, borders on negligence... It doesn't take much research into celiac disease testing to find out that many celiacs are IgA deficient.) It is true that blood tests and biopsies aren't terribly accurate in those under 2.

After pursuing blood tests, and any followup biopsies that are suggested from that, regardless of the test results, I would encourage following up with one of the most important tests - two months on a strictly gluten free diet. It is a valid diagnostic test, and an important one.

Your daughter may have celiac disease, or she may have something else wrong. But please don't give up on finding out what the problem is.

Canadian Karen Community Regular
Canadian Karen
Posted

Even if tests show inconclusive, there is a very strong possibility she is "gluten intolerant", which could be just as damaging as celiac itself. Another thing to consider is with a biopsy, depending on how many specimens they take, it basically is a crap shoot. Damage to the villi quite often is "spotty" and "patchy", and it is hit or miss as to whether they actually take a sample from the damaged area......

Karen

Guinevere Newbie
Guinevere
Posted

she sounds totally celiac from my perspective!! if it were me, i would not wait for the Dr's diagnosis, i would give her relief and start her on a gluten-free diet immediately!!! you will know better very soon, she'll even know better.

someone shared this website with us not too long ago and i am now a regular there. the information available there is priceless!!

Open Original Shared Link

do what you can to look around and look into the "Sticky - the Gluten Free File"

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,536
    • Most Online (within 30 mins)
      7,748
    Flibertygibbet
    Newest Member
    Flibertygibbet
    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

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • 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.