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

Want To Know For My Son

ldinap

Recommended Posts

ldinap Newbie
ldinap
Posted

I've been reading these posts for the past few weeks and just wanted to get an opinion on my story.

We've had an eventful 2 years in my house... birth of first child, mom sick with pancreatic cancer (who died when my son was 3 months old), executor of that estate, multiple household infections with my son in daycare requiring some hefty antibiotics for all of us. I never felt back to normal after my son but chalked it up to effects of pregnancy. About 2 months ago things got increasingly worse until finally I was having D within 20 minutes of eating anything. I had tried increasing fiber, probiotics, avoiding dairy etc but nothing worked. Out of desperation I stopped gluten (since I know someone with celiac) and at least stopped running to the bathroom for the day before I went to my GP. She called it IBS and did some routine bloodwork which was all normal. I tried gluten-free for 2 weeks, challenged it by eating normal with the same result and then went gluten-free again for 2 weeks before going back. She was very non-chalant and said don't eat gluten then. I ended up at GI because I was concerned with how careful I needed to be and if my son was at any risk. They called today and said my biopsy was negative. I was gluten-free on and off for only 4 weeks before my biopsy but the doctor said tjat it would have taken months to heal and I had an accidental exposure in there as well so that should be fine. I also had a small rash on my forearm/knee that came and went 2-3 times during this trial and error but it was never still lingering when I saw the MD. Should I stop obsessing about the possibility for celiac and just monitor my son? For me personally, I don't plan to go back to eating gluten...I'm concerned for him. Sorry for the book!

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

Celiac.com Sponsor (A8-M):


Marilyn R Community Regular
Marilyn R
Posted

Should I stop obsessing about the possibility for celiac and just monitor my son? For me personally, I don't plan to go back to eating gluten...I'm concerned for him. Sorry for the book!

I don't know if this will help or not. From what I've learned on this forum there are two genes that are carriers of celiac disease...DQ2 & DQ8. Studies in the UK have suggest that there is another chromosome that involves neurological symptoms. D3, I think.

I've avoided genetic testing, even though my neurologist suggested it, but I don't have children. From what I understand, even if you carry the gene, you will not automatically have the disease, and neither will your children. He has a 20% chance with a first degree relative with celiac disease.

So long story short, if you are willing to continue the gluten-free diet for yourself and monitor your son, I think you are doing the right thing.

I'd insist on a celiac screen each and every Dr. visit, though, even if he's asymptomatic. Wish you and your little guy well...

And by the way, I asked all of my nieces and nephews to get tested, along with my siblings.

Roda Rising Star
Roda
Posted

I think monitoring him is alright if he his not exhibiting any symptoms. Also depending on how old your child is it may be necessary to have him gluten free at home so he isn't cross contaminating you. I know it is harder the younger they are. I also agree with the pp that getting him screened (blood tested) periodically is a good idea.

I had both my boys screened when I was diagnosed. Neither at the time seemed to have any issues either. I had my oldest retested every year since then. My youngest son(6 1/2) started exibiting some strange symptoms so he was retested in Nov. 2010. His blood test was positive and was a real suprise since it was the oldest whom I thought would show positive. I opted out of a scope/biopsy since I had a firm diagnosis. To me it was a no brainer. As for my oldest son(10 1/2), he has been negative on all his blood work and even on his scope/biopsy. I've put him on a three month trial of gluten free. His current allergist feels he needs to be gluten free because of the genetic risk (mom and brother with celiac, and no we haven't had the genetic tests and not going to) and other issues. I have to say I'm glad I finaly did because I've already seen some positive changes. It was harder for me to commit for him because every test out there was screeming negative.

ldinap Newbie
ldinap
Posted
  • Author

I think monitoring him is alright if he his not exhibiting any symptoms. Also depending on how old your child is it may be necessary to have him gluten free at home so he isn't cross contaminating you. I know it is harder the younger they are. I also agree with the pp that getting him screened (blood tested) periodically is a good idea.

I had both my boys screened when I was diagnosed. Neither at the time seemed to have any issues either. I had my oldest retested every year since then. My youngest son(6 1/2) started exibiting some strange symptoms so he was retested in Nov. 2010. His blood test was positive and was a real suprise since it was the oldest whom I thought would show positive. I opted out of a scope/biopsy since I had a firm diagnosis. To me it was a no brainer. As for my oldest son(10 1/2), he has been negative on all his blood work and even on his scope/biopsy. I've put him on a three month trial of gluten free. His current allergist feels he needs to be gluten free because of the genetic risk (mom and brother with celiac, and no we haven't had the genetic tests and not going to) and other issues. I have to say I'm glad I finaly did because I've already seen some positive changes. It was harder for me to commit for him because every test out there was screeming negative.

Thanks for the reply! I appreciate it! My son has had some random symptoms since birth but none that are GI. We've been to an allergist, pediatrician and pedi GI who have all said its too early to allergy test him, just treat the symptoms. He had reflux that he was treated for a year with meds. Now he has ezcema and has been developing some other rashes that come and go. He was allergy tested and everything was negative so the ezcema is just unknown cause. The impression I was given by doctors was that my son could get routinely tested if I was confirmed celiac (which they are saying I'm not). Otherwise, there is no reason to test him unless he were to develop GI symptoms or failure to thrive. I'm tempted to try him gluten free and see what happens but I'm also too well aware now of why you shouldn't go gluten free before testing. I would bring him to my current allergist except everyone seems to agree that he is too young for anything to be accurate....its just frustrating that you're limited by what the doctors think the issue is and therefore what the insurance will pay for.

Roda Rising Star
Roda
Posted

In hindsite I see things about my youngest that raise a red flag now that very well from a young age that may have been related to gluten affecting his immune system. Here are a list of things he had:

-delayed separation of umbilical stump(was almost 3 months old)

-very bad reflux to the point he would scream

-sensitivity to rice and oatmeal baby cereal (developed rash on head)

-recurrent rhinosinusitis/strep infections(starting at 2 months)

-hives from pecans (I ate them and he broke out)

-colic if I drank/ate dairy

-developed wheezing/RAD(reactive airway disease) at 8 months old(due to reflux)

-bowel yeast overgrowth, yeast infections in diaper area and thrush-due to so many antibiotics

-adnoidectomy at 19 mo. due to recurrent rhinosinusitis

-recurrent strep tonsillitis

-MRSA infection of tonsils that required 3 weeks of clindimycin to clear up

He was breastfed exclusively until he was 16 months old. I had eliminated all dairy, oats, rice and tree nuts from my diet because it bothered him. He saw an allergist/immunologist for the first time when he was 14 months old and that was at my insistence. The specialist said to me that first day "why hasn't this child been referred sooner?" It made me really mad at our pediatrician. Had I not insisted at his 12 month check up there is no telling how long. He was allergy tested and all normal but we were told the testing was not really reliable in children that young. He helped us manage his symptoms reallergy tested him when he was 3 1/2 years old. He really helped him improve and get better. The last visit(he was around 4) he no longer needed to see him anymore and all the above mentioned things were/are no longer an issue. He really did well from age three to almost 5 1/2 years. That is when he started having bad tummy aches, fat in his stool, and weird obcessions with his shoes. I decided to see if he had food allergies and took him to a new allergist to get checked. Nothing on his allergy testing but that is when his celiac test came back positive. I was still breastfeeding him when I started having issues myself. In hindsite I was gluten light during that time. When I started weening him and adding foods back in, is when I started having issues. I wonder now if he was reacting to gluten in my diet also.

So I guess the moral of my long winded post, is if you want him tested persue it. It sounds like he has enough issues that "could" be related to gluten. Testing is more unreliable in children with a higher false negative rate though.

Archived

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

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


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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.