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Deficient disaccharidase & inflammation in small intestine
My son is 14 and has had severe GI symptoms for over a year. Symptoms started in Aug 2015, working at a zoo. Previously he never had any stomach issues, not even the stomach flu as a kid. Started having severe diarrhea & a lot pain for a day (5-25 times in a 12 hour period) this would happen 1 month. Sometimes vomiting would occur. Then he would go back to normal for the rest of the time. All labs and stool samples came back normal. They decided to treat him for a parasite because of symptoms and that he was working at the zoo when symptoms began. He was treated with Albendazole and Flagy and for almost 2 months was symptom free with normal bowel movements. Then symptoms reoccured, he had a couple times with blood and mucus. Had a CT scan that showed thickening of the ileum and mesenteric adenitis. EGD and Colonoscopy that was normal, except for his disaccharidase levels being low- the GI doc we were seeing didn't really think this was a big deal. His symptoms continued to get worse and became daily. Pain increased and he would sit on the toilet with just globs of mucus coming out. They tried some antispasm medication that did nothing. They scoped him again, the GI doctor said that the clean out wasn't ideal on the first one. This time he had 11 ulcers- 9 in his colon and 2 in his stomach, also they saw patches of inflammation. They put him on prednisone for a 6 week run including the taper. The biopies came back as normal, except again the dissacharidase being low . The GI group we were at told us that he had a Eosinophilic Gastroenteritis. After about a week on the predisone, he started doing really good and became basically symptom free. We ended up getting a second opinion as we felt that we weren't getting anywhere. This doctor had us taper more quickly off of the predinsone because she reviewed the Eosinophilic levels and they were actually normal. Once he had to taper off the predisone, symptoms came back. My son's symptom have become spending most of the day in the bathroom pooping "soft serve", lots of mucus- sometimes it is bloody. He has had a couple times of blood in his stool throughout all of this. They did a pill cam, which showed nothing. He was scoped for a 3rd time by our new GI doc and she found inflammation in the duodenum, where the disaccharidase enzymes are, his disaccharidase levels are now extremely low. His lactase is now zero, all of the other ones are very low as well. He felt really good for a couple of days after this scope, we don't know if it was from his system being cleaned out & he was also given Decadron during the procedure. This doctor is finally taking these disaccharidase levels seriously and obviously it is causing a lot of his symptoms since he can not properly digest any sugars or carbohydrates. They are trying to figure out what the cause of this damage to the duodenom and the dissacharidase deficiency. Our doctor says it is most likely from an infection (bacteria or parasite probably from the zoo) or an atypical presentation of Crohns. He seems to really respond to anti inflammatories. We are so ready for answers as this has pretty much taken over our lives. Our son is so behind in school as he has is spending so much time in the bathroom pooping. Anyone have any experience with any of this? Thank you for any help you can provide.
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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?
Yes I had similar problems when I was 14 years old and at 15 years old I was diagnosed with inflammation causing severe pain and they were going to remove part of my intestines. Now I am 72 years old. A doctor in Italy saved my life with shots of Methionine, Vitamin B-12, and vitamin K. A two week treatment and I was brand new for 3 years. He basically cleaned my liver. No doctor in USA believes Crohn's can be liver related disorder. Dr Crohn's stated that the disease impacts the liver but he didn't conclude saying that a clean liver controls the disease. I put My Crohn's in remission by taking Liver Support Factors pills manufactured by Country Life and a diet of vegetables with chicken, fish, or meat. I removed breads, flour products, sugars, and carbohydrates from my diet. This doesn't mean that will help your son but be aware that Crohn's starts at 14 years old typically. Every time I eat carbohydrates I get pain now but vegetables is saving my health. I am learning that the liver loves vegetables specially raw and once fed that it removes inflammation. The pills actually is helping if I eat the wrong things otherwise I don't need any medication. One doctor only advised me of eating everything fresh and no processed foods or any soft drinks. Non of my GI doctors advised me correctly. I attend CCFA meetings and they bring a lot of GI doctors and nutritionist explaining how to control the specific problems. CCFA.org a lot of information is available. Also Webmd have some information. DrBerg.com have a lot of nutrition inf.
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2 Reactions@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.
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1 Reaction@healthsearch Thank you for the information! I will look into the things you mentioned, I appreciate your help.
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.
Thank,
Faith
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1 ReactionThat'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!
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1 ReactionI'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?
My daughter is going through the exact same thing- can I ask -how your son is doing now, and did he have to change his diet.
The only thing that has ever worked for my daughter is steroids- but the doctors don’t think that is the answer and it is very frustrating when you see such a huge improvement (some times within hours) then as soon as they start to ween her off - you see the decline - then we end up full circle. All 5 disaccharides were low (like half of what they should be). Will your som always be on a steroid or is something he starts when a flare up begins?