We're back!!!!

[charlie]

Hi all, sorry I have been away for a long time. Lost log in details when switched computers and then life overtook us. However, resurrected old computer for another reason and magically my HFI world is back. Oh, I have missed you all. Looks like I have alot of catching up to do!!!

Where are we at? Well, Megan is now a teenager - god help me - and is sneaking an awful lot more food than she used to so we are having to deal with alot of reactions. Trying to get her to understand what she is doing to her body when she does it is hard as she doesn't remember from one time to the next, and sometimes she just can't help herself. And sometimes the school don't help by giving out sweets as rewards for good behaviour!!!! Sometimes she hands them to a friend but I know sometimes she hasn't. keep reminding them it is hardly fair to reward her with something that will make her ill but of course in secondary school they have so many teachers it is hard to keep track! She doesn't have HFI, she has Congenital Sucrase-Isomaltase deficiency and Fructose Malabsorption but she also has mild allergic reactions to artificial sweeteners and colourings so I can always tell as her eyes puff and she gets a rash above her lip.

Our biggest concern now is that she still isn't dry at night and heading rapidly towards puberty obviously could be more of a problem so I am having to strip her diet right back and slowly add things in. Got some exciting new recipes to share when I have time using Chia seeds that will be good for you guys too as she can't have much starch either.

Had a frustrating appointment with her specialist today who wasn't listening to me at all and kept talking over me. Now she is older of course they ask her more questions and she kept denying having tummy bloating, feeling sick at all and diarrhea and contradicted me everytime i said she did. When we got out of the appointment I asked her why..... bless her, the main diagnostic procedure for CSID is small bowel biopsy and she was afraid they were going to say she had to have it. Trouble is, I can understand as she has had so many tests done over the years so you can't really be cross but I had to explain the importance of giving them a true picture as now the consultant has discharged her, with the promise he will look into us getting the Genetic test done privately from Germany and possibly trialling an enzyme replacement for Sucrase which is available in the UK now on the NHS and would massivly open up her diet. I won't hold my breath for a quick response though.

So that is where we are at and i look forward to catching up with old and new over the next few days, looks like I have alot of reading to do.

[bananafish]

Charlie -

I've been reading about CSID and one of the primary treatments, Sucraid, is derived from baker's yeast (https://www.cpsc.gov/PageFiles/81690/sucraid2.pdf; also, www.sucraid.net/Sucraid-PI.pdf).

Here is a link to an old study where researchers gave baker's yeast to people with CSID and it improved their symptoms: www.ncbi.nlm.nih.gov/pubmed/3553946.

I think with Sucraid they break down the yeast cell walls using papain, extract the enzyme, and then dissolve it in water and glycerol and adjust the

[bananafish]

Sorry accidentally hit send before I finished.

So continuing from above ...adjust the pH using ascorbic acid, all so that it is stable in liquid form. But the essential ingredient is baker's yeast, which is cheap and readily available.

The amount used in the studies is 0.3 g. I weighed out some baker's yeast and that came out to about 1/16th of a teaspoon.

The enzyme seems to survive better in a full stomach, I think because the gastric enzymes are more diluted, so it seems like the proper course is to (1) take a portion before eating, and, (2) more importantly, take a portion in the middle of the meal, to ensure that enzymes survive.

So you could have your daughter try out the baker's yeast method.

This of course only deals with the sucrase side of CSID and not the isomaltase side, so you might still have to severly limit starches (depending on function and where the mutations are), and you also have to limit sucrose, just not as drastically as without the baker's yeast.

There are places you can buy tiny little measuring spoons, such as these: www.crateandbarrel.com/3-piece-smidgen-measuring-spoon-set/s188095?b=1&a=1552&campaignid=206595536&adgroupid=13838805176&targetid=pla-75700728896&adpos=1o2&creative=44897459456&device=t&matchtype=&network=g

[bananafish]

Also, here is an interesting case study that you should read:
www.sciencedirect.com/science/article/pii/S2341454514001215

In it, they mention that there is a non-invasive test for CSID using isotope-labelled carbon (this is a breath test but is NOT the standard disaccharide breath test), so a small bowel biopsy may be unnecessary.

They also are not fans of genetic testing. Here is what they say:

"In our opinion, molecular genetic test for mutation in CSID involves significant costs and brings no additional clinical benefit compared with simpler diagnostic procedures. It must be noted that more than 25 mutations have been identified which makes it very difficult in clinical practice to establish a single molecular test suitable for the diagnosis of all CSIDs."

Here is some info about the 13C breath test:
www.ncbi.nlm.nih.gov/pubmed/19330928

[charlie]

Hi, thanks for the links. We are looking into using yeast at the moment, we are in the UK so sucraid not an option but invertase could be. The 13C test also not available in our area.

She has been taking enzymes to help with starch for several years now called VeganZyme but again getting the balance right is key and that is why I am stripping her diet back first to basics, then will add stuff in until we get the right balance.

Germany have been building up a good database for the genetic side of things and so if she is positive then they will prescribe invertase.

[doro33]

Hi Charlie & bananafish

I'm just reading about using yeast, have you tried it in the end? Could you please tell me a bit more about your experience?

[ukbill]

Good to see your back but not that you are still having issues.
Love to Megan and keep smiling