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

If Your Child Is Still Having Symptoms Keep Looking


Virgie

Recommended Posts

Virgie Apprentice

Hi! Not trying to scare anyone here but my 13 year old daughter was dx in 9/07 with Celiac and did not seem to be responding to the diet. We were very strict & watched cross contamination & even changed the cat's food but she still had symptoms. Last month we visited a dietian at Mayo and had blood draws & stool testing done & was recommended to go dairy free for awhile to see if that helped. It still did not help as she still had lots of diarreha. So back to Mayo on Monday the 28th for endoscopy & colonoscopy. Well good news bad news. Endo showed real improvement so the diet is working, bad news is that she has Ulcerative Colitis. Her older brother has this too so maybe no big suprise there.

So I guess moral of this story is that sometimes it could be something else and not it is because of Celiac & that they have been accidentally glutened. Even her GI thought that maybe she had refractory celiac and wasn't thinking about UC. So it did kind of surprise him too.

I guess you never know sometimes but if you as a parent feel that something still is not right keep searching!!!

Take care all!!

Virgie

son 18 UC, EE, IBS, Asthma daughter 13 Celiac & UC


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



Celiac.com Sponsor (A8-M):



skikat Apprentice

Thank you for your supportive and encouraging words! We should always listen to our "gut"....ha ha Don't give up, and do not get disouraged. We are all warriors in this battle!

shan Contributor

At least i now know that maybe i might be right in my guesses for my daughter!! She is three and has been gluten free for 11 months and i am one of those cray, paranoid type... the one that has made my dd so scared of gluten she now uses it as an excuse not to tidy up her toys!!!

Anyway, she grew and put on weight, her mood changed, but her bloated stayed, so we went back to have her celiac blood panel again and her numbers had gone up. After crying we decided to see what was the matter and what else it could mean, and all we have come up with is the same old story "it is your fault, you must be feeding her wrong!"

So your story shows that celiac shouldnt be blamed on everything, so i am gonna fight this till we find an answer :D

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 Rejoicephd's topic in Related Issues & Disorders
      2

      Basic metabolic panel results - more flags

    2. - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - Rejoicephd posted a topic in Related Issues & Disorders
      2

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,322
    • Most Online (within 30 mins)
      7,748

    Bonjeans
    Newest Member
    Bonjeans
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
×
×
  • 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.