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

Thinking About A Gluten Free Diet For My Son And I

jellybean

Recommended Posts

jellybean Newbie
jellybean
Posted

We are both in diagnostic limbo. My son started having myoclonic seizures a year ago. He also has sensory issues, OCD, and angry outbursts. He is very sensitive to voice inflection. We have to speak very monotone because he gets hyper excited when our voices show any passion at all even if I'm speaking on the phone.He will become angry and yell and hit He is also somewhat delayed of rhis age of 3 and half. . We had considered autism, but it has dismissed because he is very social and affectionate making good eye contact. I have been suffering joint pain, headaches, extreme fatigue, mouth sores, heat sensitivity, sensitivity to light and some sound, memory loss, confusion, dropping things, running into things, etc. I am currently awaiting a rheumotologist appointment for the end of the month. My PCP suspects auto immune. I have a positive ANA, but haven't been tested for much more. I have been wondering lately if my son and I have a condition that is related possibly. We have tested him for a lot of different things. I don't thinks celiacs though. It doesn't run in my family. His blood work so far has ony shown low IGG levels. ((Does anyone know what that means??)). His geneticist suggested we see a rheumotologist for him as well. Anyhow, I've read that some people have had good luck with a gluten free diet with seizures, autism, auto immune disorders. I am looking for any advise. Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

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

Celiac.com Sponsor (A8-M):


The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

I don't know that Lyme disease is inheritable, but I guess it's possible, assuming that you're the mother. You could have a history of celiac disease in your family and not know it, as it is a very under-diagnosed (or misdiagnosed) condition and has always been, at least in America. If you or anyone in your family has suffered from cancer of the small intestine, chronic anemia, unexplained pins-and-needles sensations, lactose intolerance, explosive diarrhea, or a host of other symptoms you might have a history of celiac disease in your family. You could always try a gluten-free diet for a week or so. If you feel better after that period, this might be the answer. (As people point out around here, you have to keep eating gluten until your biopsy to get an official diagnosis of celiac disease from most doctors. However, in the case of a 3 1/2 year old, genetic testing is probably better anyway: https://www.celiac.com/celiac-disease/ten-facts-about-celiac-disease-genetic-testing-r1255/

Finally, I just want to say good luck to you and your son. Hope you find a solution in the shortest possible period of time.

gfb1 Rookie
gfb1
Posted
[snip] Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

lyme disease is NOT heritable. it is caused by bacteria -- spread (mostly) in the US by several species of ticks. it can, however, be spread from a pregnant mom to her fetus.

there are several possible causes of igg deficiency in children. as most in the forum know, many celiacs are iga-deficient. people can also be igg deficient as well. igg deficiency can also be brought on by chronic infections. there is no clear pattern of inheritance for igg-deficiency, but most children with igg deficiency grow out of it as they get older.

maybe i missed it; but, if your son has a 'geneticist' are there other problems as well??

jellybean Newbie
jellybean
Posted
  • Author
lyme disease is NOT heritable. it is caused by bacteria -- spread (mostly) in the US by several species of ticks. it can, however, be spread from a pregnant mom to her fetus.

there are several possible causes of igg deficiency in children. as most in the forum know, many celiacs are iga-deficient. people can also be igg deficient as well. igg deficiency can also be brought on by chronic infections. there is no clear pattern of inheritance for igg-deficiency, but most children with igg deficiency grow out of it as they get older.

maybe i missed it; but, if your son has a 'geneticist' are there other problems as well??

Yes, my son does have other problems. He has what they refer to as idiopathic primary generalized epilepsy with myoclonic seizures. Basically "idiopathic" means they have no clue what causes it. Epilepsy is a condition not a disease. It is caused by something else. We've been seeing a geneticist to try and figure out the underlying disease that is causing it. There has to be a cause. Epilepsy does not run in our family. I had considered lyme disease because I have been sick for some time and I had heard that it can be passed from the mother to the child during pregnancy. My son has always been very irritable even as a baby. Lots of colic. He was also sick as an infant with projectile vomiting. He was dx'd with pyloric stenosis and had surgery at 6 weeks. No clue where that came from either as it doesn't run in our families. He started having the seizures around 2 1/2 years. He was having 50 or more myoclonic seizures a day before he started meds. He is still having abnormal EEGs. He also complains of his belly hurting. He has sensory issues similar to autism, but no social issues or eye contact problems so that has been ruled out.

ang1e0251 Contributor
ang1e0251
Posted

My son has always been very irritable even as a baby. Lots of colic. He was also sick as an infant with projectile vomiting. He was dx'd with pyloric stenosis and had surgery at 6 weeks. No clue where that came from either as it doesn't run in our families. He started having the seizures around 2 1/2 years. He was having 50 or more myoclonic seizures a day before he started meds. He is still having abnormal EEGs. He also complains of his belly hurting. He has sensory issues similar to autism, but no social issues or eye contact problems so that has been ruled out.

My son also had surgery for pyloric stenosis at 6 weeks. He is a healthy 26 year old now. My understanding at the time was it is not hereditary but common in first born boys. No one in either of our families has had it. It's funny because when he was 10 months old we visited family in Colombia and the pediatrician there said it was most common in first born girls in their country!

I don't know anything about seizures but I have read other posters say they found relief from some or all of their seizures on the gluten-free diet. Belly hurting does certainly sound like celiac disease. He probably won't be able to test positive by blood as you pointed out. They could take an endoscopy but with his other problems I don't know what his dr's would advise. Would your dr agree to a trial of the gluten-free diet? You could always do it on your own but with your dr's cooperation, you could work together for a dx.

Archived

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

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


  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.