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Hello @fa7100,

I'm so sorry to hear about your son; it must be terrible to watch him go through all this.

After doing bit of research, here's what I found:

Disaccharidases are enzymes that break down complex sugars (like lactose) into simple sugars (like glucose) so that the intestine can absorb the nutrients. A deficiency of these enzymes in the duodenum (small intestine) results in a range of gastrointestinal symptoms. The most common form of disaccharidase disorder is lactase deficiency, when your small intestine doesn't produce enough of an enzyme (lactase) to digest milk sugar (lactose).

The NIH (National Institute of Health) has excellent information about this disorder, its various forms, treatments, clinical trials and research, and I would truly encourage you to read it, here: http://bit.ly/2hsXd0o

In the meantime I am also going to tag, @jay_baruch, @thankful, @mswanda, @judylindholm, @kaycigirl, @guener who have all discussed Crohn's disease, and will hopefully have some insight for you.

@fa7100, did the GI doctor explain why he was not too concerned with your son's disaccharidase levels being low? Has he started being treated for Crohn's as well?

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Replies to "Hello @fa7100, I'm so sorry to hear about your son; it must be terrible to watch..."

@kanaazpereira Thank you for the information!
*Our current doctor is addressing the low Disaccharidase levels, it was the first GI doctor that never really addressed them. But I don't think she is really familiar with it. She said that she has never had someone have all 4 levels low. It seems like from the research I have done on it says it is caused from either an infection, inflammatory bowel or Crohns.
*He was started yesterday on Flagyl. They are hoping this helps in case of a bacterial or parasite infection and also it has an anti inflammatory property.
*The GI doctor doesn't think it is Crohns but is not ruling it out. She said if it is it is an atypical presentation.
*For now she is having him take the Flagyl for 2 weeks and then we are going to see how he responds
Thanks again & if you know of anyone who has dealt with low disaccharidase pI would love to talk with them & see what ended up being helpful for them.

Hello @fa7100,

While researching the internet, I came across this statement in one of the scientific journasl: "Carbohydrate malabsorption can result from SIBO (small intestine bacteria overgrowth) due to reduced disaccharide function."
You can read the full article here: http://wb.md/2hNQBcj

Since there may be a link between the two conditions, I would also like to introduce you to @momochan, @zwar, @gfamy, @gregoryd, @melaniewa, @jwatch, @lateacher, @vwerner, @hiho, who have all discussed SIBO, and I hope they will join conversation, and offer some thoughts from their experiences.

@fa7100, have the doctors recommended a breath test for your son, to rule out SIBO or other underlying factors?

Thank you for the information. I will talk with our GI doctor about it. I wonder if they could still do the breath test for SIBO since he has already started Flagyl? In the information you provided it does look like Flagyl is one of the medications used to treat it. Again thanks you! I appreciate any information you find!

@kanaazpereira A lot has happened since I last was here! After reviewing his biopsies, current lab work, what he has had responded to in the past and his symptoms his doctors are now thinking that what he has going on is due to inflammation. He was started on Prednisone 40 mg (20mg BID) and Apriso on Tuesday (they had him take the first does of Prednisone Monday eve) and Wednesday he started feeling so much better. It is absolutely amazing, he is a different kid! Hopefully he continues to feel better each day. We have an update with the doctor next Tuesday to see where we go from here. They are hoping to keep him on Prednisone for a while and then taper off of it, then hopefully the Apriso is able to maintain the inflammation.

While we don't have all of the answers yet, I feel like the pieces of the puzzle are starting to fit together.

That's great news to hear. That's a pretty standard dose of Prednisone for a flare, and the Apriso may help for maintaining some remission over time. Thank you for sharing the improvement!

I'm so glad, @fa7100. Of course it's no fun to have this illness, but getting a firm diagnosis is probably the best news, so that your son can get the best treatment.

Have you found out what kind of inflammation he has?