CHANGED DX

[tummyache]

At 80 years old I finally have a firm DX of (CSID) Congenital Sucrase-Isomaltase Deficiency with Sever (LI) Lactose Intolerance after doing a Full DNA Sequencing. Years ago, I did DNA testing with Baylor in TX; but now they tell me that the obscure snp that was originally found is heterozygous and not important. Meanwhile, the SI snp’s (for CSID/sugars + starches) + CHIT1 snp’s (for Polysaccharides) are most definitely not OK. Interesting?! I guess they have learned a lot more in the past few years. Anyway, from observation, it sure explains a lot! There are many fruits I have problems with; the two diets are similar in some ways, different in others. So, currently eating a very Low Sugar + Low Starch + 100% Dairy Free Diet; still avoiding many fruits, some veggies, that give me trouble, and taking European Starchway Disolut pills to offset symptoms and really being careful about the diet. Feel so much better + finally have a firm answer why I’ve had problems all my life eating!

[Stefanie (Ziba)]

Congratulations on finally getting a firm Dx! I hope your health continues to improve!!

[ukbill]

Yay congratulations!

It is always a long process to diagnosis. usually 7 + years and an average of 15 doctors and 7 specialists.. so I am told by those who should know at Addenbrookes Cambridge.

However I think you may have set a new record!

The problem with CSID is it is very variable in how it shows and is 5x more frequent than HFI. As you say similar but different.

Could I ask a big ask?

Any chance you can change your profile title to show now diagnosed as CSID?

That way any HFI'er who reads your posts as to what you can and cannot eat will hopefully pick up on the fact you do not have HFI?

Asking you to change 224 posts is just too much lol.

You are about to need to change your TAG anyway to FORMER tummyache.. as you should now have a complete change in your life and feel so much better than you have ever done before!

Keep smiling and yet again congratulations!