Sucrose Intolerance?

[Charlie Arnold]

Hey, well found. Good article and ticks quite a few things with Megs. I have been thinking for a while around the starch issue and even looking at the ketogenic diet which is virtually carbohydrate free as an idea due to the blanking out that Megs displays. but Type D ticks alot of boxes when Meg was little before I took her off fruit and sugar. The excoriation on the buttocks being one of them, the poor kid if I didn't change her nappy fast after the foul poos she did her skin would burn and that doesn't appear on any FM list of symptoms, maybe by doing the HFI diet we have considerably reduced alot of irritants but the carbohydrate and starch may be why we haven't had a full result. I have bookmarked that article and will take it with me next time methinks.

Thanks Lucky for finding that.

[Charlie Arnold]

Having sat and read through this thoroughly it does sound like a very hot contender for Megan. I remember when we had the run of breath tests they were going to do sucrose problems but as the fructose was so strong they never looked any further and as it says Fructose Intolerance is a common misdiagnosis. I'm going to copy it out, highlight all symptoms relevant to Megs and send it off with a letter to her gastro doc quickly as it may be that the lab can look for that too if HFI negative while they have her blood if they do the test there. The sentence in mutation D reads the exact list I typed out in my report on her last time I saw him in March so that may spur him onto further investigate. It would also confirm my suspicions that although we are on a very strict HFI diet she is still getting problems that I think are diet related as they are so erratic.

[FMmom]

This is a real possiblity for Kaelin as well. It could be the thing that ties together so many things: CF, FM, the celiac symptoms, and maybe even the ADHD and anxiety and possible sensitivity to salicylates.

Kaelin has had to take both antihistimines and corticosteroids, but none of the medications she took were listed under the "sucrose-free". Maybe this explains why she totally, completely, utterly flipped out when she took any of these medications (it's a huge problem for her CF/asthma...)

I've noticed that Kaelin seems to push away alot of the side dishes I give her. She claimed that rice hurts her stomach. I thought she was just trying to get out of eating it, but maybe it does hurt. She used to love rice, but if I serve it too much, she won't eat it.

I think I first posed a question on potatoes back in November, then revisited it when Charlie posted a potato question as well. Kaelin does okay with the first dish, but if I repeat potatoes in a couple of days, she won't eat them.

That's true of pasta as well. She loves pasta, so she'll eat it no matter how often I serve it -- but she does let me know that it hurts and hurts a lot. She's had a lot of pasta/bread/crackers over the last few days and I've noticed her behavior is getting increasingly out of control. (We see the gastro doc next week and I think I was unconsicously doing a little carbo-loading to see if the weight goes up.)

Also, for years I've mentioned to gastro doc that Kaelin gets a rash on her bum when she eats too much wheat. I know it's not a typical celiac type of rash, but it definitely comes from wheat. She had a rash when we saw the pediatrician a couple of weeks ago. If I remember correctly, the ped said it was "excoriated" -- just a rash that popped up and then gets scratched too much, making it far worse. When Kaelin was in diapers, she had the world's worst diaper rash -- I tried everything but nothing prevented it, nor cleared it up. We had prescription creams, but even that didn't get rid of it. I remember clearly thinking it looked like acid burn.

Thanks so much for the link. I've been doing a lot of reading on other sites and I haven't found anything yet that makes me doubt that Kaelin could have it. Not that I'm trying to make a diagnosis already, but I'll definitely mention it to gastro doc next week -- absolutely want to pursue this. We're still waiting on the HFI genetic test, so gastro doc may want to wait until that comes it. But if that's negative, I hope the doctors are willing to look at CSID.

[Charlie Arnold]

Ok, so just gone on nutritiondata.com to relook up some foods searching for foods highest in starch and sucrose, these few could explain a thing or two.

The only potato starch breakdown was baked but:
Per 100g serving
Potatoes Starch 18g, sucrose 400mg
Boiled pots sucrose 190mg
White rice boiled Starch 64g sucrose 210mg
White wheat Starch 68g sucrose 260mg

Could explain a thing or two as these are the staple of megs diet.......

Just sent off the info to our gastro doc so will see what happens.....

[Deb]

Hi all,
For what it's worth, years ago, we actually trialled Sucraid with our daughter- the enzyme supplement for congenital sucrase deficiency. It was fairly easy to obtain - we just needed a note from our doctor from what I recall- and then were able to order it directly from the manufacturer. Our daughter also had the sucrose breath test at the time, which gave her some symptoms, but much milder than the fructose breath test - and no rise in methane ( the test was considered negative, as compared to the off the charts fructose results). Hence, the search for us is still on - but just thought I'd throw that out there n case anyone is considered trialling Sucraid.
Best,
Deb

[Charlie Arnold]

Hi Deb, thanks for that info, did you find it made any difference?

[Deb]

Hi Lucky,
No, it didn't help. We used it prior to the breath tests, not knowing what was wrong, only that our daughter could not tolerate foods with sugar. My understanding is that people with CSID can tolerate fructose, and in fact, it is one of their preferred sweeteners!
Best,
Deb

[FMmom]

Fructose can be an issue for CSID for some people...

I did a search on "CSID and soy" because I was curious if CSID could explain Kaelin's reaction to soy formula. (For Kaelin's adoption, we had to go to Russia twice. The first time we were told that her rash was probably due to a milk allergy, so we should supply the orphanage with soy formula. It put her in the hospital twice, the second time they considered it "life threatening". We had her tested for soy allergies and she does not and never has had one.) Anyway, here's what I found:

Characteristically, CSID first presents at the time of introduction of sucrose into the diet. This sugar may be introduced in a sucrose-containing formula (usually soy-based) or in solid foods (especially fruits). The symptoms are typical of all the syndromes of CHO malabsorption: diarrhea, bloating, flatulence, and cramps. Failure to thrive may be a prominent component in young infants. A rarer presentation has been protracted diarrhea in infants fed glucose polymer formula. Older children with CSID can develop an aversion to sucrose-containing foods, which limit their intake of this sugar.

Diagnostic Criteria. The resolution of chronic diarrheal symptoms in a patient on a strict sucrose and glucose polymer-free diet is suggestive of the diagnosis of CSID. Diarrhea induced by large complex CHOs is usually an indication of abnormal exocrine pancreatic function, such as seen with cystic fibrosis, but may also be attributed to a deficiency of glucoamylase synthesis or CSID. Distinguishing between these various disorders can be accomplished by analyzing small bowel disaccharidase activity and with CHO-specific breath hydrogen testing. A selective deficiency of mucosal sucrose activity would be consistent with the congenital form of this disorder, while a general decline in multiple disaccharidases would suggest a secondary form of sucrose-isomaltase deficiency. Breath hydrogen test can also be performed with sucrose; however, evidence of malabsorption should be followed by testing with each monosaccharide (glucose and fructose) in order to confirm the specific disaccharidase deficiency.

From Nutrition in Pediatrics: Basic Science, Clinical Applications (page 694)

So maybe, just maybe, after 10 years we could have an answer for why Kaelin had such a disastrous reaction to soy formula, why she had such an aversion to candy, and had the world's worst diapers. Ick.

The pancreatic piece is the most compelling part of this for me. Kaelin has pancreatic insufficiency, which suggests CF, but there are components that just don't match up. It will be interesting to see what her gastro doc thinks tomorrow...

[Charlie Arnold]

I agree with your last sentence Lucky and a few earlier too. I'll do one step at a time. Yes, by excluding fructose from the diet you are 3/4 on the way to the CSID diet anyway as most fruit and veg have sucrose as well and or other foods have starch.
Bananas - high starch
Carrots and oranges - high sucrose
Tomatoes pureed or paste - high sucrose
Could this be why the low fodmap diet isn't suiting a few of them.

and by the looks of the article the different mutations have different sensativity levels some not good with starch, some ok, some absolutely not good.

Now this problem occurs in the small intestines where sucrose is predominantly broken down, fructose is not transported through the villi in the small intestines, so is there possibly a general problem of sugar absorption full stop in the small intestines that creates a problem with more than one group and this is why the kids are all so confusing?

Various tests: it would be good to send out a round robin chart for everyone to fill in about what tests have been done and the negatives so far found. Having chatted with various parents over the years on the HFI board a very similar pattern of tests seem to be showing with negative results, especially EEG's and glycogen storage tests, DNA, breath tests the list goes on. Maybe by compiling a list of symptoms and tests we can help future sufferers not go through a list of unnecessary tests.

And can empathise with you about more tests, you just hit exhaustion after a while and if they are responding well to a diet you feel it is good to stick to it, then one day you just start to think "what if we are missing something" and off you go again.

It would appear that sucrose and fructose malabsorption are very poorly understood and the effect it can have on the body, but hopefully with pooling of information like this we can throw more light on a murky subject. After all, we live with the effects day by day. Good days and bad days, one day you think "yay" we are getting there then "whoops" only kidding.......

Following a new path, it is very easy for us to read a new potential diagnosis and think we have found the answer, I have done it many times myself but I must admit the sucrose and starch is making alot of sense to reactions to things she should be ok on HFI diet and starch keeps springing out from the page at me...... someone posted a polenta recipe on the HFI site, now Megs reacts to that .....guess what - high starch. But baby steps....... I have printed out almost the entire list of foods on nutrition data having retuned it to foods highest in starch and sucrose and there are several answers on there.....

Our specialist did fructose first too seeing it as the more severe of the ones to test, also as sucrose breaks down into fructose and glucose then if the fructose was positive then sucrose would be too.

But if there is a joint condition with fructose and sucrose / starch then that would explain low energy levels as neither sugar is broken down into usuable glucose to store for energy. Bit like having the heating on and leaving the doors wide open.

And yes, Fmmom, from what you have researched you especially may have found the solution to Kaelins problems. And if it can be treated with sucraid she may be able to have some of her beloved candy......

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