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

Cleft Palates And Celiac Disease


CDFAMILY

Recommended Posts

CDFAMILY Rookie

I am interested in finding more Celiacs that also have Cleft palates.

I wonder if some clefts may be caused by undiagnosed Celiac mothers with low vitamin levels caused by malabsorption. These mothers could very well be folic acid along with other vitamin and mineral deficient.

I also read an article discussing Biotin and zinc deficiency. I found it interesting when they discussed short small intestines as during my last EGD, my Gastroenterologist commented on how short my small intestine was.

Open Original Shared Link

A biochemist at the University of Arkansas for Medical Sciences (UAMS) College of Medicine is leading the study of how biotin, a micronutrient found in liver, egg yolk, milk, and yeast, may affect fetal development. There appears to be a link between the pregnant woman

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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

In fact, there was a recent post in which it was mentioned that their baby (yet unborn) has a cleft palate. If you do a search it should come up. I think it was within the last few days or so.

HTH

LOney Rookie

My son was just diagnosed at age 3.5 with Celiac disease. I just had my blood drawn today to see if I too have it, or my husband. I can't imagine my husband has it, but wonder about myself. I reacted badly to lots of food in college, but it seems that I don't have as bad of a reaction now . . .. but from reading here I know that might not mean much.

My second son, aged 18 months, was born with a cleft in his soft palate. We have not yet been through genetic counseling - as he was definitely our last. We just need to know if it is genetic for him and his older brother for when they have children.

Since my son has been diagnosed, I am now wondering if I have celiac, and if so, did that cause my youngest son's csp? I will let you know what I hear from the bloodwork, and dependent on that, I will be talking to his plastic surgeon and pediatrician to find out more.

  • 2 years later...
mtnplanner Newbie

I am interested in finding more Celiacs that also have Cleft palates. I wonder if some clefts may be caused by undiagnosed Celiac mothers with low vitamin levels caused by malabsorption. These mothers could very well be folic acid along with other vitamin and mineral deficient...

I also was born with a cleft palate, repaired surgically when I was 19 months old (about 60 years ago). I recently tested to see if I had the genes for Celiac disorder (through Enterolab). I don't have the major Celiac genes but I do have a double copy of genes Enterolab identified for gluten sensitivity and am actively reacting to both gluten and casein. Consequently I now follow a strict gluten and casein-free diet.

Gene tests:

HLA-DQB1 Allele 1: 0202

HLA-DQB1 Allele 2: 0603

Serologic Equvelent: HLA-DQ 2,1 (SUBTYPE 2,6)

Translation, I inherited one gluten-sensitive gene from each parent. My mother had lifelong issues with B-12 anemia, was short in stature in a family of tall people, and as an older person developed a series of digestive issues but no classic symptoms of Celiac. My 'guess' is that she went her whole life as an undiagnosed, latent Celiac. She passed away in 2007 at age 86 from acute leukemia triggered by chemotherapy treatment of Polycythemia Vera. I suspect that there is also a latent connection between Polycythemia and Celiac as yet unexplored in medical studies.

Cleft lip, with or without cleft palate, affects one in 700 babies annually, and is the fourth most common birth defect in the U.S. Even today the medical literature has no real consensus on the cause of cleft palate defects siting the interplay between genes and the environment plus 'unkown causes'. Current Medical literature indicates that cleft lips/palates occurs very early in pregnancy, usually before mother even aware of pregnancy. Cleft lip occurs at about 6 weeks and cleft palate occurs at about 9 weeks gestation.

In the farming community that my mother grew up in, there were a number of 'cleft palate' children. My mother was advised that such birth defects were related to the prevalence of overwork of the farmwives very early in pregnancy, that such birth defects were not directly genetic, and it was not the Mom's 'fault'. Certainly my Mom was overworked.

If one cause is a lack of a specific nutrient at a critical time during a pregnancy, it is certainly possible that orofacial defects could be connected to undiagnosed malabsorption disorders like Celiac. After folate was added to cereals around 1996, the incidence of orofacial defects dropped substantially. Therefore, if Celiac disorder contributes to folate malabsorption then one would expect to find a higher-than-average incidence of cleft palates, among the offspring of confirmed celiac parents. So far there isn't much data.

The good news seems to be that Celiac mothers following a gluten-free diet avoid major problems with pregnancies. The bad news is that testing for Celiac disorder isn't standard practice. We should be asking why Celiac tests for early detection aren't being done more often, especially among women of child-bearing age. Or maybe all pregnant women should simply be advised to go gluten-free just like doctors advise no drinking or smoking!

Keela Newbie

I was born with a cleft palate. My cleft is genetic from my maternal grandfather's family. The gluten intolerance comes from my maternal grandmother's family. In my case I do not think the 2 conditions are related, but I am very interested in this topic and would love to learn more!

  • 2 weeks later...
ida pachinsky Newbie

I had undiagnosed celiac during my preganacy. First, I did not get the prenatal vitamins until the second or third month. Doctors were quiting in our area because of insurance issues. My son was born with a subclinical cleft palete. He had a cousin with spinal bifeda (sp?). Folic is known to be the cluprit in SB and seemingly related to cleft, but I have always had a B12 deficiency. I probably had both.

At the ripe of age of 25 he came home from college with schizophrenia. I have read that 10 percent of cleft people come down with it as opposed to 1-2 percent of the general population. There seems to be B12 deficiencies corrolations with schizophrenia.

My heart has been broken knowing that non of this had to occur. My message and bandwagon has been- take vitamins. If you suck air on the face of this earth, don't think for one minute that a "good diet" will protect you. ida

  • 2 weeks later...
Desiree49 Newbie

I am in the process of getting tested for Celiac. I recently found out that my Crohn's disease was misdiagnosed. Anyway, my son was born with a cleft palate almost 5 years ago.


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



Celiac.com Sponsor (A8-M):



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. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,907
    • Most Online (within 30 mins)
      7,748

    Lori4050
    Newest Member
    Lori4050
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.