new diagnosis

[roc50]

I haven't posted here for awhile, but my problem has gone from bad to worse. Doctors said last year that I had DFI, now they say HFI. My tolerance for any fructose is nil. I haven't had a good day in quite a while and I continue to lose weight. I started at 170 last year and now weigh 118. Not only do I have problems with fructose, but also lactose and eggs. I have tried antibacterial drugs for bacteria overgrowth, digestive enzymes. Now I seem to have added hypoglycemia. I am trying to find a Dr. here that may know anything about this problem without much success. Anyone here have the same problems and do you have any suggestions?
Thanks

[lisa]

I'm so sorry to hear that things aren't going well. What kind of testing did they do to arrive at the new diagnosis?

Are you able to eat the bread from the recipe that Fred posted (eliminating the dry milk of course)? Do you do OK with fresh meats like cooked chicken breast or beef? There is also lactose free cheese

lisa said:

Lactose-free people out there, you may be interested in a cheese my DH brought home from work the other day. Finlandia imported muenster cheese (sliced) says it is "naturally lactose free" right on the front of the package. Apparently, most all of their cheese varieties are lactose free. Here's the website that tells how it is possible: www.finlandiacheese.com/lactoseFree.html
It also lists the retailers that sell their product. He bought it at Smart & Final (only in CA, NV, AZ and I think is called Cash & Carry in WA). It says "Product of Finland" on the back though, so it may be everywhere.

Can you eat regular pasta or the egg free pasta? Just trying to think of things that can help you to stop losing.

Maybe what I'm asking is - What do you eat right now? Are you losing weight because of GI issues when you ingest intolerable foods or because the foods you are able to eat don't provide enough sustenance to keep you going throughout the day?

Colleayn may be a good source of info for you. If anything, it seems like she's been through a lot and could tell you what she's tried so far.
I hope it gets better soon.
Lisa

[roc50]

their diagnosis is mostly guesswork, because they have elimated everything else, except celiac disease, through the process of elimation it seems that I am bothered by wheat or gluten, very tough to figure out with everything else going on. I switched to rice pasta and will probably try rice flour. Yes they got rid of the giardia, the stool was tested several times in the last year. The only lactose enzyme I have heard of is otc and I have tried a couple of different brands. They didn't help. I do buy lactose free milk which is ok. Thanks so much for the info about the lactose free cheese!!!! I haven't been able to find a side dish that didn't cause diarrhea, which everytime I developed another problem was greasy. I was able to eat mayo made with canola, no more, the pasta has been a mainstay until the last week or so. Meats all are fine except some of the processed ones. If I am tested for celiac and the other intolerances remain, it should prove to be interesting. I will check out the bread recipe and see if I can find collleayn. Thanks very much!!

[CK]

Hi Roc50,

I can relate to what you are going through, and it can be scary when you don't know what is happening. I have celiac disease and fructose intolerance and also have alot of other food intolerances (lactose, soy, etc.) I have just recently been able to add eggs back since my digestive system has healed a bit. I also have to follow an HFI diet otherwise I am quite sick, have terrible hypoglycemia, night sweats, etc. I have a really good article that I just received from a doctor on gluten sensitivities, that you may be interested in, but I didn't see an email to send you a private note. Here is an article as well that may help you about food intolerances: www.celiac.com/st_prod.html?p_prodid=1417 My doctor and nutritionist have also talked that some individuals with fructose intolerance also have problems with fructans, not everyone, but some do. Here is a link for further info. www.mfipb.com/index.php?mforum=fructoseintoler&showtopic=143&hl=fructans

My lowest (adult) weight was 89, but now I am up to a healthy weight and am feeling quite a bit better. My diet is very boring (as I am sure many of you experience as well), but it is working. I am still working at trying to absorb foods and vitamins.

If you want more information, please let me know what your email is. I'll be-able to offer some other info. as well. You may even want to post your information on this site as well: www.mfipb.com/index.php?mforum=fructoseintoler&act=idx it is another site for different types of Fructose intolerance- you might get some more information to help you on your journey there too.

Warmly,
Colleayn

[roc50]

colleayn,
thanks for all the information, sounds like we have a lot in common. Do you know why eggs are a problem?
I decided to try the gluten free eating habits and I feel a little better, but as you say the choices available are boring, but I really don't care for now. What things do you eat? I have spent so much time thinking about this, maybe theres something I overlook that I might be able to eat.
My e-mail is [e-mail]

[Laurie]

Has dumping syndrome been mentioned? Hunter went thru the same types of things, all of the sudden noodles, eggs, milk, etc..., were causing diarhea and cramping. They finally added dumping syndrome to his long list of dx's. He has to do small meals with limited servings and everything has to be an hour apart. (example: noodles at 11am, 1 cup of milk at 12, crackers at 1)
Since following the "amounts" allowed and spacing thing the way the list from the doctor shows, things have improved and we have those things back now.
Just a thought, might be worth trying, you never know right!!

Laurie

[roc50]

laurie,
good grief, never heard of that one, that has to be difficult. I really don't think so because sometimes my lower tract is fairly calm, but as soon as I try an offending food it goes into overtime. you must have a great doctor, the ones I have had don't seem to want to think too hard. I will keep it in mind tho in case the gluten, fructose, lactose free diet doesn't work. thanks

[roc50]

just an update,
have tried the gluten free diet and I believe that is also another culprit. Of course, now I'm having trouble with my blood sugars. I can't imagine how anyone could survive with all these intolerances. I tried potatoes again and had cramping most of the next day, but I guess I just have to weigh what is the worst offender, and at this point gluten seems to be the worst, but of course, I rarely eat any of the other foods.