Hello from Undiagnosed Newbie Parent

[lotusmoss]

Hi all-

I'm new here and wanted to make sure that it's okay to post. Our 17-month old son doesn't have either an FM or HFI diagnosis yet because our Ped GI has refused to give the breath test (he says he's too young), but we're working on getting a referral to Cincinnati Children's GI group and getting the BU genetic testing done. I just wanted to say hello and make sure it's okay if I post and follow along here even though we're not official. We started a low-fructose diet 4 months ago on a hunch looking at his food diaries, and most of his face and bottom rashes have gone away and his perma-diarrhea has gone away.

Our son was diagnosed with Food Protein Induced Proctocolitis (blood and mucous in stool) at 6 weeks and I breastfed him, but had to eliminate dairy, soy, gluten, all nuts, chocolate, coconut, and obvious corn in my diet, and in his diet once he started solids, to do so. Once I weaned to flax milk at 14 months (he was eating solids like a champ), he started getting diarrhea and mystery rashes that wouldn't go away. It was so confusing because he had been doing so well. It was my husband poking around in his food diary and realizing that he had major issues after eating high fructose fruit and veg that sent us down this route.

In the meantime, we're dealing with an extraordinarily limited diet--low fructose, plus dairy, soy, gluten, corn, and nut free. I'm working on putting together a site that will have recipes that are appropriate to share with everyone if that's okay with the admins here. Though I'm grateful for the resources from everyone, almost none of the HFI or low-fructose Pinterest boards work for us because they're full of dairy, gluten, and other processed foods that we can't eat. 

Thanks for sharing advice here--I'm so glad to have found this board regardless of what our diagnosis ends up being.

[ukbill]

The breath test is quite dangerous if your son has HFI / Hereditary Fructose intolerance / Fructosesemia which are all the same conditions. I.E problems with ADalaiseB enzyme. This is a metabolic condition where Fructose Phosphate is not broken down in the liver by ADalaiseB enzyme.

The condition is quite distinct and while some digestive issues are also present giving your child high fructose food would have resulted in projectile vomiting, severe hypo (low blood sugar) reaction, sweating and very limp unresponsive child, possibly to the point of calling Emergency medical services.

It is unlikely your child would have eaten much of the fruit anyway because most of us are self regulating and reject sweet flavours.. its a learnt reaction from being made ill by anything we eat that tastes sweet.

FM Fructose Maladsorbsion (what the breath test is for) is a different condition and non life threatening. There is a separate support group on Pro-boards for that condition.

FM is commonly mixed up with HFI (on the internet) although the condition requires a low fructose diet it is far more forgiving than HFI which is genetic and can cause liver failure if a strictly very low Fructose diet is not followed.

Hope this helps you in your search for an answer?

Good luck.. and keep smiling all will sort out in the end

[colormist]

Welcome!
I'm not sure how much help I'm going to be given the restrictions, but other people on the board might be able to help! There are quite a few parents and adults here that have multiple dietary restrictions (in addition to fructose), so I'm hoping they will be able to help you--at least until you get a diagnosis!

I'm really quite happy that your Ped GI has refused the fructose challenge test as that is hella dangerous for an adult HFIer to take--I can't imagine what it would do for a child. That being said, the symptoms you listed don't sound like HFI, but better safe than sorry!

Keep us posted on the results! We'd love to be of any help we can be!

[ukbill]

x2

[antonia]

You might try a Facebook group called "Parents of FructMal Kids - fructose malabsorption USA". It's a closed group, so you will have to ask to join. It's excellent, lots of moms there that deal with multiple conditions on top of FM and have very restrictive, complicated diets. Also, many with FM follow the Low FODMAP diet which avoids other fermentable sugars and fibers, such as lactose in dairy and fructans found in wheat. Meaning many recipes are lactose and wheat free in addition to being low fructose.

I would agree you need to rule out HFI before getting the FM breath test. Understand the difference between the two before discussing with doctors and specialists because quite frankly the majority of them don't understand either condition very well. For FM you will need to see a GI. Ask about their knowledge of FM and try to find one that considers FM one of their specialties. For HFI you will need to see someone in the biochemical division or a geneticist.

FM is a GI condition caused by the malabsorption of fructose. When fructose is not absorbed it remains in the gut, is fermented by intestinal bacterial which causes all kinds of symptoms/problems. It's often associated with SIBO, the overgrowth of bacteria in the small intestine.

HFI is not a gut or malabsorption issue. Fructose that IS absorbed and enters the blood stream cannot be metabolized by the liver because a key enzyme involved in that process is absent. This "clogs up" the liver with unprocessed fructose and in turn causes hypoglycemia or low blood sugar. Look for signs of hypoglycemia if you think HFI is a possibility. Very difficult in young children I know. Especially overnight when the body is fasting and can't correct low blood sugar with food is when you will notice more symptoms.

A quick list that comes to mind for my daughter at toddler age for hypoglycemia: extreme hunger or ravenous appetite, pale skin, weakness and lethargy (difficult to pinpoint when young, but my dd would say things like "My legs won't work" or "I am wobbly" when doing something like climbing stairs), drastic mood changes/irritability like a light switch (food can correct it if it's the right food), bad breath (fruity or acetone is a sign of ketosis), poor sleep habits: sweating while sleeping (especially the head/hair), constant night waking, nightmares, seizure like movement while sleeping (jerking and twitching), always grumpy and irritable upon waking (my daughter never woke up happy before the HFI diet), stomach pain, nausea, vomiting. For my daughter she did not vomit until blood sugar was clinally low. It didn't happen that often and won't if the majority of a child's carbohydrates are safe, are glucose based starches and grains. Again, that's why you will see symptoms more at night when BS is not able to be corrected with safe food. You could also invest in a glucose meter. They're not too bad, just a quick prick, my daughter does not even wake when we use it at night.

I hope that helps some. Wishing you a speedy diagnosis!