My wife's symptoms, please help

[Tammy]

Hi Angela
If you are working with CHOP, does that mean you are in my part of the world? Or did you travel to get there? I am in Central PA. Before my daughter was diagnosed we were sent to CHOP one time. This was back in early - mid 80's. Then they just sent us back to Geisinger in Danville, PA.

A few years ago there was a mother on here from New Jersey who took her 2 boys to CHOP.

There is (or at least used to be) also a family in Camp Hill (near Harrisburg) with a daughter. Not sure where she went to doctors though.

So welcome to the board. Sounds like you understand how you need to feed the kids to keep them healthy, even though it's a lot more complicated than I need to do. Good luck.

[roman]

Dear friends, I was away on travel in Europe for two weeks - this is my first day back in the US. Angela, your info correlates with what our doctor (Dr. Nunes in San Diego, a rare disease specialist) said when I asked him if my wife could have Fructose 1,6 biphosphatase deficiency. He said he did not think so, because people with FBPase deficiency have trouble with gluconeogenesis and maintaining BG level, which means they have to eat starch constantly. This is exactly what you are describing, and I dare say that had you seen Dr. Nunes originally, he would have focused on the FBPase deficiency right away (rather than HFI).

As an update about Helena, my wife, she has been on a very strict fructose-avoidance diet since about February 20. She only eats eggs, meat, fish, animal fat, dairy products, and for fiber she puts chia seeds into goat milk. She also drinks green tea with cream. Chia seeds are the only possible source of fructose, but they do not seem to pose a problem. She has had no rice in at least three weeks, which tells me that she does not have FBPase deficiency, just like Dr. Nunes said. Interestingly, when she tried psyllium husk instead of chia seeds, she felt bad. Twice. I know that some people here have a problem with powdered psyllium fiber, but she used whole husk, and still had a bad experience. Not terrible, but unpleasant. She has been otherwise symptom free since her strict diet started. Does anyone have a similar experience with psyllium?

[roman]

Angela, I wanted to say that some white rice, namely Thai jasmine rice, is more glycemic than pure glucose, per equal weight of each. The GI intex of jasmine rice is 120 (glucose is 100). How is this possible? Starch is a polymer of glucose, but because of missing water molecules, 100 g of starch actually contains more glucose rings than 100 g of glucose. When you eat rice, your saliva provides the missing water as your enzymes break down the starch, so that when the rice hits the stomach, it is pure glucose and it spikes your blood sugar more than glucose of the same weight.

A beter rice is Basmati, with a lower GI than jasmine rice. It has to do with the structure of the starch, with how accessible is starch to amylase that breaks it down into individual glucose molecules.

Likewise, the GI index of some white bread can be as high as 130...not that I'd ever recommend bread to anyone, least of all to a confirmed celiac.

[ukbill]

Being totally suspicious and cynical..

In the UK the news this week has been about some research which shows people who eat white rice are increasing the risk of getting Diabetes..

This is clearly wrong otherwise China and India where people eat rice 3 or 4 times a day would be full of diabetics.. which they are not so the research is flawed

I wonder who funded the research??

Any bets it might be the American Sugar refiners or similar company?? (the makers of HFCS)

I want to reiterate to anyone worried there is unlikely to be a link between Diabetes and White Rice.

Where as the link between HFCS and diabetes and obesity is clear and proven.

[charlie]

It probably has more to do with what they eat with the rice..... White rice has a higher glycemic index than brown therefore likely to burn faster and then they need more food to top up. Probably, apart from those on this board, most people that eat white rice are likely to have a more junk food diet.

[ukbill]

Well certainly most Chinese meals and Indian type curries served in the UK seem to have a lot of added sugar (and getting more) I think sweet and Sour Chinese meals out sell most other judging by what people tell me, also all pre packed meals for two or more from Supermarkets seem to include one Sweet and Sour dish in the pack.

I know when the tobacco industry were trying to "prove" smoking was not bad for us they paid for massive amounts of "research" to "prove" there was no link to Cancer and lung diseases..

The Tobacco industry had published so much "research" on the basis that they would swamp out the true properly conducted research. Hence my scepticism and suspicion about this latest "research".

[roman]

ukbill, population studies are useless because it is impossible to separate all the factors and confounding variables. For instance, one study finds that meat increases cancer risk, while another (better) study finds that it is the processed meats (with nitrate salts) that increase risk of cancer by 40% if you eat a serving of it a day, but red meat that is unprocessed carries absolutely no increased risk of cancer. Same with this rice study. There is plenty of research in the past 10 years that shows that obesity, type-II diabetes, and hypertension (the so-called metabolic syndrom) is caused by increased fructose intake in its many forms, such as cane sugar, fruit juices, honey, and HFCS of course. Also, liver inflammation (and cirrhosis) can be caused by either alcohol abuse or high fructose intage. NOT by glucose intake (starches, such as from rice or potatoes). In other words, you are spot on.