Pretty desperate for some guidance

[Pua]

Aloha, could use a little insight from those who are familiar with celiac. I’m starting to think my dad , me and my son all have it

As a kid I had severe stomach cramps and constipation. I would sleep on the bathroom floor all night often and the pain waves would end in diarrhea. I vomited often. Easy bruises, vitamin d&b12 deficiencies, asthma,  iron deficient anemia, chronic sickness, fluid in ears, hearing loss, adhd, depression, and as I got older extremely heavy periods, mood swings, and severe allergies where doctors would prescribe me epipens saying  I had a reaction but allergists would say I’m not allergic to anything. I’ve been so sick my whole life until I randomly decided to cut out our gluten because I was so tired of doctors. Felt great and all my symptoms started going away. 
 

when my son was born people started making us meals and I ate gluten again and was breastfeeding. My son was always projectile vomiting, colic, acid reflux, screaming all night and day and doctors did what they did with me and treated symptoms separately. He’s 14 months now and always severely constipated, has stomach pains, poor sleeping, always had red eyes, loses weight, fluid in ears, rashes, 4 ear infections in 2 months.
we don’t feed him dairy but started giving gluten when he was about 11mo old. 
doctors just say to give him formula still , MiraLAX, acid reflux meds, no dairy and I feel like I’m symptom chasing just like I was my whole life. 
has anyone had experience with toddlers having celiac? I didn’t do the blood test because poor guy has been under so much testing and er visits and I stopped giving him gluten 2 weeks ago so I didn’t want to do it for a negative test.  I also had all the same issues he’s having when I was a baby 

 

I don’t want to eat gluten for long periods just for a positive test but has anyone been in this boat? Does celiac get progressive because I believe my dad has it too and his health is even worse than mine 

mahalo 

 

 

 

[Scott Adams]

Aloha! It sounds like you've been through so much with your own health and now your son's too—I completely understand why you're questioning celiac for all of you. Your symptoms and family history really do line up with what many experience with celiac disease. It’s common for it to be missed by doctors who end up treating the symptoms separately, as you described.

For toddlers, celiac can definitely show up as constipation, stomach pain, poor growth, rashes, and recurring ear infections, just like your son is experiencing. In little ones, the digestive system can be especially sensitive, and gluten can trigger a wide range of symptoms that often go undiagnosed. Since you’ve already cut gluten and are seeing improvements, that’s a pretty strong indicator that gluten may be the underlying cause for both of you. Some families do choose to stay gluten-free without testing, especially when the gluten challenge feels too risky or uncomfortable.

As for progression, yes, celiac can worsen over time if untreated, which might explain why your dad’s health is more severe. It can also look different from person to person, so it’s not unusual for you and your dad to have varying symptoms. If you do want to explore testing without a full gluten challenge, you might consider genetic testing (HLA-DQ2 and HLA-DQ8), which can show if you or your son are at risk, though it won’t confirm celiac on its own.

If you did want to confirm this with blood screening unfortunately you would need to eat lots of gluten daily for 6-8 weeks leading up to the test.

[trents]

Welcome to the forum, @Pua!

Yes, many, many forum participants have been in this same boat. That is, suspecting celiac disease and testing the waters by going gluten free but then realizing they undermined the ability to bet tested for it by doing so. It's a very common mistake??? but a completely understandable decision making sequence.

The symptoms you describe in both you and your son are strongly suggestive of celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). It is also true that a high percentage of those with celiac disease (one small study found it to be 50%) react to CMP (Cow's Milk Protein) like they do the gluten in wheat/barley/rye. And about 10% of celiacs also cross react to the protein in oats (avenin). 

Although it doesn't seem prudent at this point to seek testing for celiac disease since it would require you and your son to be eating regular amounts of gluten for weeks leading up to the test, it might be helpful to seek genetic testing to see if you and he have the genetic potential to develop celiac disease. If you don't have any of the celiac genes, you should look at NCGS instead. Genetic testing doesn't require a "gluten challenge".

Are you nursing your son? You might look into a hypo allergenic baby formula called Neutrogena.

[Russ H]

Note also that the amount of problematic protein (gliadin) that is found in breast milk of women having a normal gluten containing diet varies but is very small. Although the study referenced below says 'very high', the amounts detected vary between undetectable and a maximum of 1.2 parts per million. Breast milk is considered safe for infants with coeliac disease even if the mother consumes gluten.

 

https://pubmed.ncbi.nlm.nih.gov/9867098/

[Wheatwacked]

When my son was weaned in 1976 he was diagnosed with Celiac Disease.  My mom said at the time. "you got what you gave."

His doctor insisted on Nutramigen as the only hyperallergenic baby formula with full nutrition.  After 6 months he was weaned to gluten free diet.  It seems it still has that status.

He has grown strong and well.

[Pua]

Mahalo for all of the answers this has been super helpful. He is doing so much better on a gluten free diet. I may consider genetic testing as I never thought of that as an option and I definitely don’t want to go the usual route and have to give him gluten again for the test. It’s nice to have an “official diagnosis” but as long as he’s healthy I don’t care.  mahalo again!

[trents]

Pua, do you understand that genetic testing cannot be used as proof of having celiac disease as it only establishes the potential to develop active celiac disease? About 40% of the population has the genetic potential to develop active celiac disease but only about 1% actually develop it. However, it can be used as a rule out measure.

[Pua]

Thanks for the numbers. Yes I understand and I don’t know if I would do it. All I know is whatever my dad and I have attacks the whole body and once I cut gluten out everything heals. My son is doing so much better so I’m going to keep doing that. I don’t see the need to gluten him just to get an official diagnosis and go through what I did. 

[trents]

Although genetic testing cannot be used as a stand alone diagnostic measure, it can serve as corroborative evidence to support a diagnosis of celiac disease when considered together with symptoms, particularly when withdrawal of gluten results in dramatic improvement in symptoms. This may be the best course of action in cases where health risks make the gluten challenge inadvisable. Some physicians are open to declaring a celiac diagnosis on this basis.

Edited November 11, 2024 by trents

[Scott Adams]

I can understand your decision, and if he ends up having the celiac disease genes, and his symptoms go away on a gluten-free diet, at the very least you can likely conclude that he has NCGS and possibly even celiac disease, although you can be certain about the latter.  Actually he could still have NCGS without any genetic markers for celiac disease. 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.

There can be some negative consequences with a formal diagnosis, for example it is included as a disability now on most job applications, life insurance can be more expensive and harder to get, and depending on what changes are made to the ADA over the next few years it is possible that those with pre-existing conditions could be penalized.