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

Help! (new Here...)


kentsmom

Recommended Posts

kentsmom Newbie

Greetings all!

My son is almost three, and has been diagnosed with a developmental delay. He doesn't talk much, and when he does, his speech is at an 18 month level. He has none of the sensory issues or repetitive motions associated with autism spectrum disorders.

Is it possible to have Celiac disease without the skin problems? Also he rarely has constipation or diarrhea.

He does, however, have painful gas and loss of tooth enamel; he's very pale and small for his age; he's an incredibly picky eater, and he's only grown an inch and a half and gained three pounds in the past year.

I'm going to ask the ped. about this at Kent's appointment in two weeks, but the responses to this query will determine how hard I push for a referral.

Is a biopsy really the only valid diagnostic tool?

Thanks,

Jen


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Hi Jen, welcome, you have come to the right place for support and encourgement.

yes it is possible to have celiac disease without Skin problems. It is also possible to not have diarrhea or constipation, in fact some people have the disease and never have GI problems at all.

In my opinion a biopsy is not the end all be all however docs look at it as the "gold standard". The reason I say this is because I went through all the blood test, biopsies and they all came back negative. My doc NOW informs me that it takes TIME for a disease to show up in the blood or to damage the villi in the small intestines. A lot of docs will accept an improvement on a gluten-free diet as a dx too.

I was tested through Open Original Shared Link they test the stool which is more sensitive than blood and more accurate than blood. You also do not have to be on gluten. This is how my 8 year old daughter was tested too, I refused to put her through ALL the test that I went through.

Ihope your little one feels better soon! :D

mat4mel Apprentice

Yes, it is possible to have Celiac and have no Gi symptoms and no skin problems. I would definitely insist on blood tests. I personally do not think you "need" to have a biopsy to make a diagnosis. The procedure is not without risk, and false-negatives are really common. I would say have the blood work up and if any of that is positive, do the gluten free diet.

Mel

kaylee Rookie

Hi Jen,

if your son is very small, pale, has tooth enamel loss and painful gas then looking into celiac disease is indeed a good idea as the others have suggested. Could I also add as a suggestion that you could put the time before the ped. visit to good use by keeping a food diary? Make notes on absolutely everything your son eats and also on anything that could be related - like mood (for example, irritability), physical things (the gas, but also trips to the toilet), tiredness, etc. Is his belly distended?

I found keeping this type of diary invcredibly useful when we first put our son on a gluten-free diet, but we were striking out sort of blindly, looking for answers without really knowing where we were going (it turned out to be a really good direction, though!). A diary might give you some extra info to give your pediatrician, too.

Best,

Kaylee

ashlees-mom Rookie

Hi Jen, I agree that you are looking in the right direction here! I think you have gotten some great advice, I would like to add that you might have to educate your ped about celiacs. My daughter was having extremely slow growth, but everyone assured me it could't be celiac disease. Unfortunately, she had to get extremely sick (the diarrhea did come eventually!) and lethargic before we were able to get her to the RIGHT specialist who could diagnose her. I later sent some information to our Ped who is ordering Danna Korn's book for the ped office now! Just be prepared to have to put up a fight, and don't let the Ped reassure you without doing tests! If it is celiac disease, it would be much better to find out now then to have him get really sick. Hang in there, you are doing the right thing!

Michelle

Guest Evelyn's mom

Jen,

You are definately doing the right thing by seeking information regarding Celiac. Take the time to study as much as you can. Some information seems conflicting but this site is really an excellant place to start.

My daughter's blood tests came back inconclusive but her symptoms were severe. I wish I had known about Enterolab at that time because I would have gone that route instead of putting her through the biopsy. It's a personal decision I think, but the biopsy procedure was very hard on all of us and I won't do it again with any future children I'd have that may have Celiac.

Hope this helps! Again, you're on the right track!

RaeAnn

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    2. - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

    4. - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

    5. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,851
    • Most Online (within 30 mins)
      7,748

    Samanthmay
    Newest Member
    Samanthmay
    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

    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Francis M
      Absolutely my point with Kerrigan, the owner. She stood to secure many years of faithful patronage by simply inviting us in for a pastry or lunch. Or by simply producing another $50 e-card based on trust. We would have been highly satisfied. We are limited to a few restaurants in the area, and that would have been one. It was very disappointing, esp to my wife, to realize we can't patronize the place anymore.
×
×
  • 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.