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

Could It Be?


melblondin

Recommended Posts

melblondin Apprentice

Hi all -

I don't want to be hyperparanoid about the possibility of my son having celiac, so I wanted to get your thoughts and see if this could possibly be a reaction or just a matter of coincidence. My son pretty much ALWAYS has flaming red cheeks, explosive, bulky stool, and frequent tummy aches. Well, the other night I noticed that his cheeks were a relatively normal color and started thinking through what he had eaten that day. It turns out that he had had a gluten free day except for some goldfish crackers at lunch. I am gluten free for a wheat allergy and probably celiac too, but hard to get a gold standard diagnosis with not having gluten in my diet. I am DQ2.5 positive, so I'm guessing I passed that lovely gene along to my son, but I don't know for sure. At any rate, the next morning, he had 2 bowls of Quaker oatmeal with barley in it (that had made me sick before) and within 20 min. or so of eating, he was rolling on the floor saying his tummy hurt, his face was flaming red, he went #2 3 times throughout the day, fell asleep by 11am, which he NEVER does, took a 3 1/2 hour nap, and ran a fever until 3:30am the next morning.

Is that a reaction and could it have come on with only one day of having been mostly gluten free or do you think it was just a random bug of some sort. He's completely fine this morning. :huh:

Oh another maybe random thing is that he craves milk like crazy. He woke up at 3:30am because he had to go to the bathroom, but was begging for some milk and asked for some more as soon as he woke up. This is something that happens a fair amount, so he either just really like milk or his body is telling him he needs it for some reason...


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



Celiac.com Sponsor (A8-M):



melblondin Apprentice

ok - so he's not totally fine now. He's gone to the bthrm twice already and starts crying uncontollably at the slightest thing. His fever is gone but belly still hurts like crazy.

cal220 Newbie

You mentioning how your son is craving milk gave me flashbacks to the weeks before my son was diagnosed at age 3 (he's now 7). He always wanted milk and yes in the middle of the night too. His main symptoms were the distended stomach and skinny legs (but that can vary so much). You aren't being paranoid, get him tested or have more gluten free days for him and hopefully you'll have an answer. Good luck!

Carol

melblondin Apprentice

Thank you!!! I've always thought this was kind of odd, but I figured maybe he just really likes milk! I haven't seen much posted on this type of a craving, so I'm thankful to see I'm not the only one who has noticed this!

Officersbride Newbie

How weird!?! My 3 year old daughter craves milk like she's about to be stranded somewhere!! I've posted about her...no diagnosis, and her labs are normal, but she has concerning symptoms. She downs a whole gallon of milk by herself in just over a week (that doesn't include what she drinks at daycare). Her teacher has told me that at each snacktime/meal at school, she asks for refills of milk so much that they have to tell her "no" after the 3rd refill....so then she goes to the water fountain to get water.

I thought it was just how she was! (And her blood sugars have been normal, so diabetes has been ruled out....)

Tammy

concernedmamma Explorer

Interesting! My son (age 5) was diagnosed Celiac in March. He has ALWAYS craved milk. We call him our milk hound. Even as an infant (we have known something was wrong with his bowels/digestive system his whole life) he would drink HUGE amounts of milk. Now that he has been gluten free for 2 months his milk and liquid consumption has normalized somewhat. I wonder what the connection is?

Kim

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. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    2. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      GI DX celiac despite neg serology and no biopsy

    3. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    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

    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
×
×
  • 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.