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

I Have Celiac- Think My Daughter Does, Too...

alexisb

Recommended Posts

alexisb Rookie
alexisb
Posted

I need help! I have Celiac and I strongly suspect that my two year old is coming down with it. Persistent, mucousy D two weeks long now. I had her tested last December and she was negative, but she really didn't have any symptoms, we just tested to be sure. I took her in yesterday and he suggested some changes from the BRAT diet. Nothing has helped. She's been on gluten all the while. I know an obvious suggestion would be to try to go gluten-free with her, but with siblings and church, etc. its really hard, and I would rather just get her blood tested right away to confirm things. These are my questions:

1. What are the real statistics out there on the percentage of kids who get celiac who have Celiac parents?

2. If my little Mary had a negative blood test in December aren't I right that Celiac can just pop up anytime? (and I know that there can be false negatives...)

We're going back to see him tomorrow and I want to be a bit more informed. HELP!!!!!!!!!!!!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
I need help! I have Celiac and I strongly suspect that my two year old is coming down with it. Persistent, mucousy D two weeks long now. I had her tested last December and she was negative, but she really didn't have any symptoms, we just tested to be sure. I took her in yesterday and he suggested some changes from the BRAT diet. Nothing has helped. She's been on gluten all the while. I know an obvious suggestion would be to try to go gluten-free with her, but with siblings and church, etc. its really hard, and I would rather just get her blood tested right away to confirm things. These are my questions:

1. What are the real statistics out there on the percentage of kids who get celiac who have Celiac parents?

2. If my little Mary had a negative blood test in December aren't I right that Celiac can just pop up anytime? (and I know that there can be false negatives...)

We're going back to see him tomorrow and I want to be a bit more informed. HELP!!!!!!!!!!!!

Toddlers are notoriously hard to accurately diagnose. It may well be with family history that she is celiac, but trying to get it proven by a doctor's diagnosis may be very difficult. If you are gluten free, why is it so hard to try her on gluten free too?

I don't think there are any statistics as to the percentage of people who inherit the gene who go on to develop celiac. Once you get beyond cihldhood it seems to take some kind of trauma or stress to the body to activate it and, as I said, the testing of youngsters is quite unreliable. Certainly it can crop up at any time but whether the testing will show it is another story. The best test would be to see if Mary improves on a gluten free diet, at this point. I know this is not the answer you wanted; perhaps someone else will have a more satisfactory answer.

ang1e0251 Contributor
ang1e0251
Posted

It is hard enough to get dx'd as an adult but as a toddler, whew, it can be really tough. Why not have your dr run the panel again, even if you have to insist? Remember it can still be negative, it often is in young children. Ask your dr that if you put your child on a gluten-free diet trial, what results would he consider a positive response leading to a dx?

no-more-muffins Apprentice
no-more-muffins
Posted

Have you considered (or heard of) the gluten testing offered by enterolab.com? They don't diagnose celiac per se, but they can tell you if your baby has gluten intolerance.

I would suspect though if you have it, and if she is symptomatic, it would be worth it to give the gluten-free diet a chance. I think I'd do that and see if you see improvement. That is as good as an official Dr. diagnosis IMO. And cheaper, and you don't have to wait for her to get sicker before doing something about it.

mmmomx2 Rookie
mmmomx2
Posted

Danna Korn cites in her book that 10 to 30 percent of Celiacs have a first degree relative with Celiac, so the chances are good, especially considering her symptoms. I only discovered I was after going on the gluten free diet for my son. The blood work, according to our pediatric GI specialist, is notorious for false negatives (including my son's), so you may want to consider the endoscopy if you really want a firm diagnosis. I would be inclined to agree with the other posts and just try the diet, since you are already on it. If her symptoms stop, then you know.

Archived

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

Go to topic listing

  • 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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,034
    • Most Online (within 30 mins)
      7,748
    PitbullTeacher
    Newest Member
    PitbullTeacher
    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

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.