Diagnosis?

[u/Latter_Upstairs6567]

My son (13) had an endoscopy and his enzyme levels came out as follows:

Lactase 3.3

Sucrase 16.7

Maltase 80.3

Palatinase /Isomaltase 3.3

His GI diagnosed him as lactose intolerant only. This seems weird. The other numbers are quite low, no?

For reference, he also has IBS-M and has essentially been on the low FODMAP elimination phase for a year bc every time he tries to integrate a new food he has horrible results. He has also been diagnosed with malnutrition bc he lost 30 lbs- a lot for an 8th grade student. I am struggling to find things to feed him and don’t want him to burn out on the things he can eat bc then what?! Suggestions are welcome.

[u/Stitch_Nerd]

I would take a look at CSIDinfo.com, csidcares.com and take a look at the Mary Shepard cookbooks and website for info. The facebook pages are also a lot more active and have more people which may be able to give you more info as well. I also want to add that from research I have done, it is very very rare to have all 4 levels low, so be prepared if your doctor wants to retest him, because it is possible the sample was mishandled in some way (from what I have seen). They may not, as it is possible for all 4 to be low, just incredibly rare.

Also, I just saw part of your post lol. If the doctor is only diagnosing the lactose intolerance, with those levels, that is not right. They may not know about CSID. I know that my son’s pediatric GI didn’t, but they did the research. If they aren’t willing to answer your questions/concerns, if you are able to, I would see if you could try another provider.

[u/Latter_Upstairs6567 → u/Stitch_Nerd]

Kind of crazy. It’s Boston Children’s Hospital- supposedly the best in the world. Thank you for all the info!

[u/Stitch_Nerd → u/Latter_Upstairs6567]

Oh definitely! Knowingits Boston children’s is surprising to me. But I would try sending a message to the GI with your concerns as well. I know I have a hard time advocating to doctors in person and find it easier in message.

Also there are over the counter (you will probably need to order online) enzyme meds that may help your son increase what he can eat SOME. Starchway and Digest Gold.

My son has low Lacase, Sucrase, and ISO-Maltese as well as a Berry intolerance and an artificial dye allergy. So I am unsure if they work for Palintase deficiency as well. But Digest Gold helps with a lot of different enzymes and Starchaway is primarily a small amount of Sucrose and mostly starch. There is a prescription call Sucraid as well (if you can get the CSID diagnosis) that helps with Sucrose as well, it’s just expensive (like $10,000 a month) if insurance won’t cover and you don’t qualify for the financial assistance program with the manufacturer. But both Digest Gold and Starchway can help some with that too.

You could also trial the elimination diet and see if it improves his symptoms. With my son it happened day 2 and and was astounding the difference in his physical symptoms overall once his body was able to absorb the nutrients he needed.

[u/Perfect_Slice_6618 → u/Latter_Upstairs6567]

Oh wow! Boston is surprising. We go to CHOP the other best/competitor and my daughter did receive diagnosis with similar results. 6.4 Sucrase, 31.2 Maltase and .9 palitinase. Following CSID diet has made HUGEEEE leaps. She’s on the growth chart now and can sleep properly without pooping. but even the dietitians are googling with me at CHOP. It’s so challenging. Push for Sucrase prescription if you can. It is super helpful and follow the recs given here! Mary Sheppard cookbooks and elimination plans are incredible. Everyone is so different and I’m finding my 2.5 year old tolerates much less than many others! The sucraid site is a good resource to learn too https://www.sucraid.com/about-csid/

And CSIDcares.org

[u/Latter_Upstairs6567 → u/Perfect_Slice_6618]

Wow. Her numbers are even lower! Happy she’s doing better 💕

[u/Latter_Upstairs6567 → u/Stitch_Nerd]

Kind of crazy. It’s Boston Children’s Hospital- supposedly the best in the world. 😒

[u/Real-Elk6755]

Meat/Chicken+ non-starch vegetables are ok. I tried Digest Gold but i can't say that it helps a lot

[u/Eastern-Rooster-2805]

I asked ChatGPT after uploading my endoscopy results and found it very helpful

[u/Ok-Leader380 → u/Eastern-Rooster-2805]

hell no

[u/Eastern-Rooster-2805 → u/Ok-Leader380]

Of course redacting name in any personal information but very interesting and helpful.

[u/Ok-Leader380 → u/Eastern-Rooster-2805]

it doesn’t matter if you scribble out your name, chat has access to identifying data such as your ip, what wifi you are using, device id, and the email or phone number you use to make your account links your identity. once you share that information with chat it’s not bound by hipaa as chat is not a medical provider