Undiagnosed, suspected HFI or severe DFI

Hi. Welcome to the board, hopefully we can help to point you in the right direction.

I will leave the testing info to the Americans on here as I don't know how the system works but I can maybe answer other questions.

Which problem is it? Certainly your symptoms after eating suggest a metabolic problem where when the "toxin" is in the system it affects the pH balance of your blood causing headaches and nausea. My daughter gets this within half an hour of having sugars and I can see it coming on now by the colour change in her face. She then gets hypoglycemic as a follow on and then yo-yo's. but which metabolic problem is it.

Have you been absolutely diagnosed celiac or its suspected. It may mean the problem is your absorption through the small intestines which is where alot of the sugar malabsorptions originate. If celiac is suspected but is negative to the absolute test then you may be looking at sucrase-isomaltase deficiency as the starch in wheat is the problem not the gluten and then sucrose is in so many foods that also contain fructose. Also for some the lactose is a problem so you have multiple sugar malabsorptions in one condition. The good news on this is that you can replace the missing enzymes to open up the diet. Usually you get bad diarrhea with this but not always and often depending on how much of the enzyme is missing.

With DFI or fructose malabsorption then wheat again can be a problem due to the fructans it contains so you do have to eliminate it. But usually lactose is not a problem.

Your safest route is to try to get the genetic HFI test done first as it is non-invasive but it doesn't necessarily pick up all the mutations so isn't absolutely negative. If you already have liver problems then that is your safest first step. If they insist on doing the breath test then try to get them to do bloods too as they may show more what is going on as the breath testing is rather random (in my opinion).

Otherwise your best option is the elimination diet and take out absolutely everything with sucrose, fructose, wheat and dairy which I think you have done already then slowly add things back but only low fructose, sucrose first. If you go over to the malabsoption link in my signature it shows how to do this. Use things like the www.nutritiondata.com to check values.

Until you have eliminated all toxins for a few months you will find your body over-reacts to foods and therefore weight gain is hard as your body will just be throwing stuff out. Peanut butter (contrary to popular opinion) has high fructose in it so thats no good. Your best base diet (unless it is starch related too so look up www.csidinfo.com for that incase) is white rice and plain meats or fish and eggs. Avoid potatoes for now as they do have low fructose but maybe add these in first. My daughter has safe sausage and bacon for breakfast every day and does really well all morning on that.

As for vitamins, to avoid setting Bill off again there is a recent thread on peoples ideas on that subject if you click on new topics in the top bar it will come up as recently discussed and then you can make up your own mind. Colormist has posted about cron-o-meter which you may find helpful to use to help you decide.

Any way, hopefully that has given you some ideas to consider. Good luck and please feel free to ask anything you want.

Charlie

Welcome to the site Dryope,


Hopeful we can help or at least off some assistance.

You say "It goes without saying that this has all been a life-long problem. As a child, I ate almost exclusively rice and chicken and didn't touch fruit or vegetables. It was only as an adult that I got myself into this mess by trying to be healthy and a more adventurous eater. "

Well that is as good an indication that HFI is possibly the root cause of you condition as anything else.

Been as its been life long that usually rules out DFI, FM et all

You sound to me to be classic HFI and the fructose contamination in the Dextrose has been doing you no favors at all!

You are lucky not to have been taking Glucose all these years that has more Fructose in it than Dextrose (we think).

I am not a medical professional so I do not know if the Celiac problem is related to your (probable) HFI or not.

However when the liver is damaged or having a hard time of it, particularly after years of Fructose damage, it may well then have problems dealing with everyday difficult to digest things like Gluten.. so maybe a strict HFI Fructose free diet might solve all your problems (eventually your liver is likely to take months to years to recover fully).

I have seen similar problems with friends who became alcoholic, as their livers get more damaged, they can not eat many of the things they used to be able to eat.

Unfortunately the sort of damage Alcoholism cause's to a liver is not repairable often.

IF I can be of any help with a healthy HFI diet please let me know .. Colormist and Sheree have HFI food blogs also.

You can find them from links on the site and from the Facebook page Sheree runs.

Take care.

Thanks, UKBill!

The celiac is totally separate. It also means dairy is out for the next two years or until my insides heal from the celiac damage. So sad -- everything is bearable with cheese. Liver is delicious but out from my hemochromatosis. I successfully ate a Hebrew National hot dog with fried rice and some light spices and caraway seeds, though! So I'm trying to get creative. Reading up on what is safe for people on this board has been a godsend.

The weird thing is that eggs seem on the fence -- sometimes they affect me and sometimes not. I know the yolks have fructose in them, and when I cook them it's usually OK but raw in homemade mayo they put me right out. So I'm a little suspicious of them, even when cooked.

Anyway, what gives me pause is my liver panels have always been just fine. But then I know my celiac was protecting me from my hemochromatosis and vice versa, so it's possible that there is more going on here than I realize. Since going gluten-free my iron has shot up (celiac causes anemia). Anyway, I may just have one of those 30% mutations or something if HFI is even a possibility.

Anyway, thanks again!

Thanks, Serene. Yes, celiac confirmed by blood test and I had a biopsy already, but going to Mayo for some follow-up. A few recovering celiacs have severe reactions to fructose several months after going gluten-free, but they have much worse damage than I do and different reactions. I just bought a blood sugar monitor, so I'll start testing my patterns to see if it's HFI or a really severe DFI. And I sent away for 23andme.

Glad to hear you healed up after some time without fructose! I hear it takes a while to clear your system. I wonder if there is intestinal damage along with HFI? If so, there should be some blood markers like tTg or something, I imagine. Did you fail the celiac panel altogether then? I only had the tTg positive and failed all others and the biopsy. TTg shows damage and is 90% specific for celiac, but could also indicate other intestinal damage, such as from autoimmune liver disease. But my liver panels have always been just fine (though I am slightly yellow and always have been). HFI has so little research, I wonder if it could also cause this blood work. The biopsy showed no damage. Then again, it often misses it.

I react to cow and goat casein, so no dairy for me. Any lean meats are fine. I just don't like meat. Sigh.

Anyway, having second thoughts about aggressive diagnosis after reading colormist's blog post about insurance. Yikes!

Thanks--please update on the forum with your genetic test. I do wonder about the lesser mutations, though, which 23andme doesn't check for and I hear Dr Tolan does.

Btw, tTg is a marker of intestinal damage from an autoimmune disease, almost always from celiac. I haven't had the genetic test yet. 30% of the population is a carrier, but only 1% develop the autoimmune condition (or so they say). It's almost certain I have celiac. But since HFI is so unresearched, I suppose intestinal damage from that could maybe also cause it. I confess my scientific abilities are mostly aspirational. HFI isn't autoimmune, so maybe that can't be.

I'm glad to hear you don't have gluten issues, though! But HFI or severe DFI is worse. It sure sucks to read Living Without or any of the other celiac magazines . They want me to eat what?! The DFI forums are equally ridiculous with their half a banana a day and salads at every meal and whatnot.