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New Here...so Little I Can Eat These Days!

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Hello! I have been lurking and reading here for quite some time but finally decided to join.

I have been suffering from digestive issues for 15 years. I've seen lots of specialists, took lots of medications, and never found a single "cause".

However, this year has been an eye opener for me. I kept having these weird bouts of horrible stomach symptoms. It was like I had drank the stomach flu. It would take me out for a week at a time. It happened 3 times before I sought a specialist. He would be the 4th gastroenterologist I have seen. Two years ago I was diagnosed with Fructose Intolerance, or Fructose Malabsorption. I didn't take it seriously and I didn't change my diet as much as I should have. The GI doc I see now is convinced that the Fruct.Mal is the main cause of these weird flare-ups. I'm not so sure, but I decided to give the fructose-free thing an honest try. This has been quite the hurdle. You don't realize just how many foods contain fructose until you can no longer have them. Bye bye fruits and most vegetables! Not to mention all condiments and almost anything that tastes good. Ugh. :(

6 months after making this change, I was still having GI symptoms. I am not lactose intolerant, but for right now, I can't seem to handle dairy, so I gave that up too. Adios, beloved cheese!!! :(

I have atypical PKU (http://en.wikipedia.org/wiki/Phenylketonuria). Thankfully my diet for that particular ailment is not as strict as it would be if I had classic PKU. However, I still have to keep a watchful eye over my protein and phenylalanine intake. That means most sugar substitutes are out for me, too. I can't have fake sugar, but I can't have real sugar either. Dang! :(

But, I am STILL having symptoms. I am on day 20 of my gluten free trial. My mom has issues with gluten, which was my first red flag. I started suspecting gluten several months ago when I read that most people with Fruct.Mal have gluten problems, too. I realized that I had my worst stomach symptoms after breakfast and lunch. For breakfast I was eating cream of wheat and for lunch I was eating a sandwich and triscuits. When I gave up the cream of wheat and triscuits, I noticed a definite improvement. It wasn't drastic, but it was improvement. And that alone was worth its weight in gold.

After my last bout of horrible crippling stomach pain and sickness that lasted for days (although I am sick to my stomach every day, this was over the top terrible), I vowed to do whatever it takes to get my life to a place where I felt okay living it. It hadn't been there in a very very long time. As in, since I was about 13 years old. And I decided to try to give up gluten.

Honestly, it hasn't been easy, but it hasn't been as hard as I thought simply because I had to give up fructose first. When fructose went, so did breads and crackers and pasta because they all have sugar in them, too. I had already suffered the pain that came from giving that stuff up. Going from fructose free to gluten free wasn't much of a stretch, thankfully. If there's any bright side here, that's it.

But I struggle to find foods to eat. I basically survive off of white rice, chicken, potatoes (still safe, thank goodness), a little bit of pork, gluten free oatmeal (bob's red mill) and a very very minute amount of safe vegetables (right now just zucchini and cauliflower). It's a humble existence, that's for sure. I have a high stress job and as a result, I cannot afford to challenge my fructose diet at all during the week. And if I get sick, it takes me a couple of days to recover. Basically, I can try 1 new thing a week...if I don't have anything planned that weekend. It is very, very slow process and I find myself frustrated at just how little information there is out there for Fruct.Mals like myself. But I digress.

Going through all of this about killed me. Really, it did. I suffer from depression as it is and this was a real blow to me. Especially finding out that I can't eat much of the special PKU diet food that I would need to eat in order to get my phe levels low enough to have children safely. Right now, children are off the table for us. And it is because of my body's inability to process any kind of food correctly. That did NOT help the depression thing one bit.

My husband and I have a great life. It's just the two of us and our dogs and we have a lot of fun. In the evenings, we used to come home from work and get out our pots and pans and make awesome spicy authentic Mexican food and drink a home-brewed beer with the music cranked. That was our thing that we did for fun. And, sometimes, we'd go out to dinner. Or we loved to grab fast food and a movie. My entire lifestyle revolved around food. That changed as a result of my gut and I hated it. I gave up everything.

But it did help me to change my unhealthy attitude toward food. I have spent most of my life overweight and am happy (and rather startled and slight worried) to report that I've lost 70lbs in the past year. It started falling off when I gave up fast food, then more so when I gave up sweets, and just kept going. I am now finally at a healthy weight for my height, but continuing to lose more, which worries me.

There is so much to juggle with my diet that I really worry about malnutrition. My main symptom is "the big D" so I worry that I'm not absorbing enough nutrients. I supplement with the things I know I tend to be deficient in (calcium, C, D, iron and magnesium) and also take a high quality sugar and gluten free multi-vit. But I still worry.

I should mention that I have recently had the full GI work up. Everything looked great, other than confirming the Fruct.Mal diagnosis (dang) and GERD. I do have a little bit of irritated tissue at the top of my stomach, but that's it. According to my biopsies and blood work, I do not have celiac disease. But I am confident that I can still be gluten sensitive.

Right now, according to my various diets, I cannot have very much protein (PKU), fruits or (many) vegetables or sweets (Fruct.Mal), dairy (?!), or anything containing gluten. I also try to stay away from artificial colors and preservatives, but that definitely is at the bottom of the list. It is a struggle to find ANYTHING to eat these days. It's very difficult.

I suppose that I've joined this forum to look for other people who are dealing with the same (or similar) combination of weird, competing diets that I am. Maybe you guys will have some suggestions for me....foods to try or things to do. Or, just as good, maybe I can find some people who have had to live through the same challenges that I have been dealing with. My family tries to understand, but they don't. How could you unless you've been there? How could you ever know what it's like to look at food and really have to think hard about whether or not you should eat simply because you KNOW it will make you sick for some reason..unless you've been there? I know many of you know what it's like to wonder if it's easier to just NOT eat before an important event or big day simply because it's easier to be hungry than it is to be sick. And I know many of you know what it's like to look at your SO's food and drool and feel so sad....wondering if you will ever be able to eat anything good ever again.

I know that many of you know exactly what I'm feeling right now.

Looking forward to getting to know you all. :)

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Lesson 1. Shorter posts, I think about 80% of the people on here have a.d.d

on another note, welcome offically!

p.s I can't read the post because I'm not fully healed and I'm paranoid xD

I might start assuming somethings wrong with me ! =O

but srsly, good luck with that, I know it's a beeeetch

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Hi , Sounds like you have a few things happening there. Are you FODMAP ? http://shepherdworks.com.au/disease-information/low-fodmap-diet I am not sure what FrucMal is ...but if you are FODMAP then you need to see a good dietician to explain it. I think Sue Shepherd does skype consults still. You have mentioned afew things that suggests you need this help. For eg - the fruits of FODMAP can be eaten. It is all about balance and quantity. Did you know you can eat glucose with the danger fruits to balance out the fructose molecule. Have you considered onions ?They are a major FODMAP intolerance for a lot of people. Not all fruits and vegetables have the same load either.. You talk of lactose intolerance and giving up cheese. No need for that. Hard cheese has very little lactose as does butter, cream and greek yoghurt. You mention the wheat but are you totally gluten-free ?What about barley, rye, oats.. I react to corn and sorghum too. Have you been tested for Celiac ? I am FODMAP as well as Coeliac and lactose intolerant and have a great diet. Schar pasta is brilliant and why can't you eat Mexican? Almond flour baking is easy and stores well. Hubbie and have risottos, asian stir fries, fried rice,pasta meals, all the time. Lots of variety. No need to go without..

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ADD....got it. Good to know. I do tend to babble. I'll see if I can keep this one a bit shorter. ;)

Yes, I've been tested for celiac. Negative.

I'm not lactose intolerant - was just tested 2 months ago. For some reason cheese and milk tend to make me very sick, very fast. I do fine with butter.

FructMal is my shorthand term for Fructose Malabsorption, not to be confused with hereditary fructose intolerance, which is far more serious.

I haven't eaten onions in ages. They are high in fructose.

The FODMAP diet intrigues me and I have read a lot about it. I abide by it and then some - am a bit more careful about fruits and vegetables than it requires.

As for gluten free, I think I'm doing pretty well for now. I eat oats, but they are Bob's Red Mill gluten free oats....supposed to be free of any cross-contamination.

Doc took me off corn when I was diagnosed with Fruct.Mal. I don't eat any breads, crackers, pasta or anything that would contain flour of any type.

I do miss pasta, but most of the gluten free pasta I've found is made of brown rice, which is off limits for Fruct.Mals (depending on who you listen to).

My beloved Mexican food got the heave-ho for a few reasons. First, I can't have tomatoes. Second, red spices like paprika and chili powder are extremely high in fructose. That stuff absolutely KILLS me now. I'm talking about severe, crippling pain for 4 or 5 days. It's just not worth it. Mexican food kind of sucks without tortillas or taco shells. Or cheese. Or spice.

I have been practicing taking Dextrose with questionable things to help myself digest excess fructose. I use Smarties. They seem to work fine and taste good doing it. They are, so far, the only sweet thing I can tolerate.

I am seeing a nutritionist at the end of the month for PKU related stuff. I'm hoping they will be able to refer me to someone who is familiar with Fruct.Mal and gluten issues.

Thanks for the links and the welcome!

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Mexican food kind of sucks without tortillas or taco shells. Or cheese. Or spice.

Ain't that the truth!!! (and without the tomato!! ) Not worth going in the door :lol: Same goes for me with Thai and Chinese :rolleyes: and Indian :blink:

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Ain't that the truth!!! (and without the tomato!! ) Not worth going in the door :lol: Same goes for me with Thai and Chinese :rolleyes: and Indian :blink:

I know.

I never was a fan of tomatoes themselves, but I sure loved LOTS of things they're in. Like salsa and ketchup. Oh, and the fantastic fajitas that this nearby little hole in the wall Mexican place makes. Food that good should be illegal. Unluckily for me, now, it may as well be. :huh:

I miss Chinese food, too. I guess I can still eat rice. That's the same thing, right?


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