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

When Should I Have My Son Tested?

Guest PastorDave

By Guest PastorDave
in Related Issues & Disorders

Recommended Posts

Guest PastorDave
Guest PastorDave
Posted

Hello,

This is not Pastor Dave, it is his wife :rolleyes: . I do not have celiac disease and I frequently eat gluten. I have never taken our son Jonathan off of gluten either, although both of us eat mostly gluten-free whenever David is home. We live in rural Missouri and I have not been able to find a doctor here who can give me clear advice about when to test Jonathan, or the new baby I am pregnant with. Jonathan is tiny, 37 inches tall, but only 30 pounds at four years old. His stools have been coming more frequently and he is having lots of accidents although he was fully potty trained over a year ago. What type of testing should I recommend my doctor do first? I am at a loss, but am scheduling a check-up for Jonathan this month and would like to try to bring it up again then.

Also, I am planning on nursing our new baby exclusively for at least six to eight months before introducing solids, and not adding gluten until well over a year. Is there any research or advice on whether I should eat gluten while breastfeeding (does it cross through breastmilk)? I have not been gluten free through the pregnancy, truthfully the thought never occured to me. We were still reeling from David's diagnosis (he was diagnosed in November and I have been pregnant since September.)

Thanks in advance for the advice!

Pastor Dave's wife - Christina

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

Celiac.com Sponsor (A8-M):


GFdoc Apprentice
GFdoc
Posted

Christina - Your 4 year old son should most definately be tested. He could be small due to family genetics, or could be small because he has celiac disease and is malnourished from poor intestinal absorbtion! Ask your doctor to send off the following tests (and make sure he is not gluten free until the tests are done):

1. IgA quantitative (to make sure there is no IgA deficiency - this would render the next test inaccurate

2. Tissue transglutaminase IgA (tTG-IgA) - these tests are best performed by Prometheus or Mayo laboratories, but the tTG test is done by a computer so it may be OK even at another lab.

If the IgA levels are low, indicating an IgA deficiency, then your doc needs to ask for the IgG tTG test as well.

If your son tests positive, many docs will insist on a biopsy of the small intestine to confirm the diagnosis. If positive, then your son should be checked for thyroid levels, anemia and iron levels, and vitamin b12. anti-Gliadin antibodies should be done for a baseline level as these will need to be checked every 6-12 months for future follow-up/compliance with the gluten-free diet.

I recommend asking your doc to check with the University of Chicago Celiac Disease Program (773) 702-7593. This program offers assistance to doctors as well as to patients re: diagnosis and treatment of celiac disease.

As for the questions about your current pregnancy and whether you should be gluten-free now...I would definitely direct that question to the Univ. of Chicago also. They have the most up to date info...

Sara

Guest PastorDave
Guest PastorDave
Posted

Sara,

Thank you so very much! It is very very helpful to have the number of the Univ. of Chicago to give to my doctor. He is very interested in celiacs, but lacks the knowledge, and lacks the time to do a full study. I will ask for/insist on scheduling testing for Jonathan, again thanks for the specifics. Jonathan might "just be small" (I am 4 foot 11 and usually weigh 115 pounds) but he looks more like his dad who is 5 foot 10 and only weights 130 pounds. Everybody always said David was "just small" until we insisted on testing after his mother was diagnosed.

Thanks again!

  • 8 months later...
tpineo Rookie
tpineo
Posted

I am wondering if anyone has any information on recommendations for a non celiac disease pregnant mom when one child in the family already has celiac disease? We have 2 kids (one with celiac disease, one without) and are thinking about a third.

1) First, should Mom be gluten-free during pregnancy?

2) Second, should Mom be gluten-free for breastfeeding?

2) Third, should the newborn be gluten-free for a year? longer? not be gluten-free and watch for symptoms?

I feel keeping the gluten away longer gives the newborn a better chance but I am wondering if there is any research to back this.

Any information is appreciated. Tania Greenville, PA

lovegrov Collaborator
lovegrov
Posted

This is an area with varying opinions. One study suggested that delaying gluten beyond normal intoduction actually increases the chances of celiac. Another study indicated that children who continue to breastfeed past the introduction of gluten are less likely to get celiac, although no one knows whether that continues into later life.

There's a similar debate about eating gluten while breastfeeding.

I'm fairly certain, though, that the general advice is to introduce gluten at what would be a "normal" time, whenever that is (my youngest is 12 so I've forgotten these things).

richard

hapi2bgf Contributor
hapi2bgf
Posted

Hi,

I'm the celiac in our family, but we also have a child with a peanut allergy. I am 30 weeks pregnant. My OB is of little help regarding the entire Celiac issue. I just had to spend a long visit at my Gastro who I do like and trust very much to sort of all of my issues with regards to the pregnancy and what needs to happen or not.

My Gastro is under the opinion that you do not test a new born or very young child unless they are "faling to thrive" or showing other symptoms. My newborn would test positive for Celiacs because of me is the idea. I liked the idea of waiting until the child is having other blood tests done at an older age to discuss having the gene test or Celiac panel done on an otherwise healthy child just to know where you stand. My other child had the Celiac panel done twice right after I had the diagnoisis. She was elevated on one and normal on the other. The specialist said to go with the non-celiac until symptoms present.

(Christina - I would have your child blood tested. There is a numbing cream that your pediatrician should have. If not, you can order it through your pharmacist. It will make the blood work much less traumatic for you and the child.)

As for the nursing, as the celiac I have concerns here. My first ended up with double ear tubes, peanut allergy, and pencillian allergy. So nursing didn't do much to help out in the allergy category for her. My gastro is of the opinion that you need to do what works best for you the Mom, the baby, and the family. For me they recommend presumming that this next child does not have celiacs. The breast feeding didn't work too well with the first baby, so I think this one will be nursed and get supplimental bottles.

Best of luck on your pregnancy and delivery!

  • 3 weeks later...
Merika Contributor
Merika
Posted

Hi,

Regarding the breastfeeding, there is a newish study out on celiac disease that shows the ONLY external variable in whether a person gets celiac disease is LENGTH OF EXCLUSIVE NURSING TIME, meaning the longer you exclusively breastfeed, the less likely your child will develop celiac.

So, nurse nurse nurse :) This won't prevent celiac, but it does increase your odds. Check out www.lalecheleague.org for lots of great info on breastfeeding and to find a group near you.

Good luck!

Merika

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

I do not agree with that study by the reaon for it happening and how they select people to participate.

From everything I researched before it is that being breastfed can push back the onset of symptoms, and that's it.

flboysmom Rookie
flboysmom
Posted

Hmmm...that's interesting. I wonder how long they suggest to nurse? I breastfed both of my boys and although we haven't had them tested they are having a positive response to being gluten-free. When my second son had gluten a week ago, his stools were white and runny. The rash on his arms and legs tripled in size( layers of bumps), and his mood was severly affected. So we are pretty certain that he is gluten intolerant. He had breastmilk until he was nearly 10 months old and my husband is the one with celiac...not me. He is currently 2.5 years old and has shown symptoms since being introduced to solids at 6 months old.

Merika Contributor
Merika
Posted

Hi,

I don't think they make a recommendation for exact length of nursing because they don't know. They did find that the longer you *exclusively* nurse, the less likelihood of celiac. Unfortunately, it is difficult in the United States to find many mothers who nurse exclusively even up to 6 months. I bet, for example, that if you stopped nursing at 10 months, then you introduced formula or solids before 6 months. Am I right? :)

Also, it's not whether the mother has celiac, it's whether the baby carries the gene(s) for celiac. Apparently, 25% of the US population carries the gene for celiac - that's a lot! But only 1% of us actually get celiac.

hth,

Merika

(ex-sociologist and loves statistics and studies :) )

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.