Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Is This Celiac Or Ibd?

Momto2girls

Recommended Posts

Momto2girls Rookie
Momto2girls
Posted

My DD is 4 and has had GI issues for a long time -- everything from constipation to impaction with diarrhea and tummy aches, reflux and overactive bladder due to constipation. In April the did bloodwork for Celiac which came back normal. But at that point she was getting constipated to the point of impaction within 2 weeks -- we'd do a cleanout -- and boom, need to do a cleanout again in two weeks. And this was with her going everyday (on miralax AND senna laxatives) -- so she wasn't holding it.

So we did an endoscopy & colonoscopy -- our GI was sure they'd find celiac. But when the biopsies came back she said she was "thrown sideways." Not only did we not find Celiac, but they found inflammation in her ileum and large colon. So, more imflammation indicative of IBD, yet they still will not diagnose IBD b/c there was no damage, yet.

But they went ahead and put her on sulfasalazine -- an IBD med, and she was SO SO SO much better! Perfect, in fact! But the doc wanted her to go off of it so she did and now she's having problems again...grrr.

I keep having this sinking feeling that maybe it really is still celiac? She has other severe food allergies, and maybe this isn't so far fetched?

Does anyone know? Has anyone had a celiac child improve on sulfasalazine? Thanks for any insights you might have!

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

Has she had the genetic testing? If the genetics are negative, maybe she does had a non-Celiac gluten issue. (Yes, I know someone will say you can have it without being genetically + but such cases are few and far between).

Why did the Dr. what her off the meds? Are they damaging?

If you really think it is Celiac, have you gone to another Dr. for a second opinion?

Is she possibly being exposed to one of her allergens?

I would start with a second opinion and the genetics. If that is all clear maybe try going gluten-free and see if there is any improvement.

Sorry you don't have more answers. It's so hard when we want to get our little one's well :(

Momto2girls Rookie
Momto2girls
Posted
  • Author

Thanks, it is discouraging. I am thinking they only keep kids on the meds if absolutely necessary and hat would only be with a definitive diagnosis of Crohn's. (I say Crohn's b/c apparently inflammation in the ileum is Crohn's rather than Colitis). So I think he'd rather see she's having difficulty without the meds and re-scope than to just go back on the meds! Which seems crazy to me. And believe it or not, this is our second GI doc.

Her allergies are epi-pen allergies (nuts and eggs) so she's not had those -- they are lips swelling, hives, throwing up allergies that lead to anaphylaxis.

I honestly don't know if it is celiac. Some days I think it is some days I think it isn't. We haven't had the genetic test. So maybe that's next in line? I just wish this weren't so complicated!

Has she had the genetic testing? If the genetics are negative, maybe she does had a non-Celiac gluten issue. (Yes, I know someone will say you can have it without being genetically + but such cases are few and far between).

Why did the Dr. what her off the meds? Are they damaging?

If you really think it is Celiac, have you gone to another Dr. for a second opinion?

Is she possibly being exposed to one of her allergens?

I would start with a second opinion and the genetics. If that is all clear maybe try going gluten-free and see if there is any improvement.

Sorry you don't have more answers. It's so hard when we want to get our little one's well :(

GottaSki Mentor
GottaSki
Posted

Just my opinion - sounds like the sulfasalazine was successful in reducing inflammation which improved your daughter's symptoms - whatever is causing the inflammation remains. Since testing has been inconclusive I would remove all gluten for at least 3 months without the use of any inflammation meds. Often living gluten-free is the best test - especially in children because their systems heal much more quickly than those of us diagnosed after decades of damage.

One other thought - have her vitamins/minerals been checked - Bs, D, K, Iron, Ferritin, Copper and Zinc? If these are low it can indicate she is not absorbing nutrients properly - another strong indicator of Celiac Disease.

I know Celiac testing can be very frustrating - it would be wonderful if there was one test that could rule it out.

Good luck to your family :)

P.S. If you chose to pursue genetic testing, it can be done anytime - going gluten-free will not effect the results like it does with blood and/or endo.

GFinDC Veteran
GFinDC
Posted

HI,

I can't say which she has, celiac or IBD, but I do know that some people with Crohn's follow the gluten-free diet. It seems to help some of them but not all of them. Some people don't follow the gluten-free diet until they have a flare and then they do gluten-free until the flare passes. I don't think that makes sense but it's what they do. It is possible to have both Crohn's and celiac.

pricklypear1971 Community Regular
pricklypear1971
Posted

HI,

I can't say which she has, celiac or IBD, but I do know that some people with Crohn's follow the gluten-free diet. It seems to help some of them but not all of them. Some people don't follow the gluten-free diet until they have a flare and then they do gluten-free until the flare passes. I don't think that makes sense but it's what they do. It is possible to have both Crohn's and celiac.

If memory serves correctly, 30% of Crohn's patients are dx'ed Celiac as well - they have both.

Mom2J112903 Newbie
Mom2J112903
Posted

She can have BOTH or just an IBD, which honestly it sounds like she has and that is the proper dx. My son's entire GI system is messed up and he has dx for every section of it actually. There is a GREAT IBD support group for parents, I can send you the link if you would like.

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
Momto2girls Rookie
Momto2girls
Posted
  • Author

Hi everyone! Well, back to GI doc today and he still seems to think that the Celiac diagnoses is the most likely, and he wants to re-do the Celiac panel. It has only been 4 months since we last did the bloodwork -- but he said that's long enough for something to change. He said 4 years old seems to be the borderline age for most kids -- where they've been eating gluten for long enough that it would show up in their system. She had just turned 4 when we tested her last. So, I am thinking we'll test again before we take her off gluten and then we'll try gluten free after that either way. He doesn't think it is IBD at this time...and I don't think it is nothing at all. Ack!

Archived

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

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


  • Member Statistics

    • Total Members
      127,223
    • Most Online (within 30 mins)
      7,748
    Noddy989
    Newest Member
    Noddy989
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Enegy level extremely low

      By Scott Adams · Posted

      @EricaFilpi, please tell us more about your recovery...did you need to take iron infusions or supplements? What other supplements are you taking? I'll assume you've been gluten-free since August.
    • joleenrae
      + bloodwork - endoscopy.. then + bloodwork and another + bloodwork.. next endoscopy??

      By joleenrae · Posted

      We have been tested and tested negative. But we have not done the gene testing. 
    • cristiana
      Family education

      By cristiana · Posted

      So true, @trents, I was a skeptic myself!  
    • trents
      Family education

      By trents · Posted

      Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!
    • EricaFilpi
      Enegy level extremely low

      By EricaFilpi · Posted

      Hey SicilyGirl, I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas boxes around like they were nothing, and then I ran off to make dinner. Talk to your doctor about your concerns and give yourself some grace. 
×
×
  • Create New...