Pregnancy and HFI

[shereebailey83]

Hello, I'm new to this forum and im hoping for a bit of support. My name is Sheree and i was diganosed with HFI when i was 3. Like we all know there are many hurdles you have to face with having HFI but i now face my hardest one yet. I have recently found out that i am pregnant and although i haven't had any bad dietry effects as yet i am very worried about how my condition may effect pregnancy and my body. If there is anyone who has been through it or can help in any way, i would appreciate your time. Thankyou!!

[colormist]

Lots of moms on here with HFI (I am not one of them), but they all said it was not a big problem--no more than usual, anyway. I talked to my geneticist about it and he said there should be no concerns with pregnancy aside from people trying to give you things (orally) with sugar in them.

[julienc]

Hello Sheree! Welcome to the forum!

I have had two babies, and neither were any problem with my HFI. I was diagnosed later in life (between my two pregnancies), so I was in the dark for one but fully aware of HFI for my second.

The first hurdle will be the gestational diabetes testing that happens (I think) around the 22 week mark. They typically make you drink a glucose/sugar drink or eat lots of jelly beans. In both pregnancies I opted for a fasting test instead. It is unusual to go this route, and you may get some strange looks from the lab, but it is no problem and easy to do. Just takes a little longer. Your OB will be able to specify the test on your lab form.

The second hurdle was the hospital food. They could not figure out how to bring me "fructose free" food. It was a bit ridiculous, but in the grand scheme of things not a big deal.

Overall, I didn't have any complications with my pregnancies, and nothing HFI-related as long as I stuck with my usual diet.

I opted not to genetically test my second for HFI. I knew the signs of what to look for when introducing solid foods and decided to go the wait-and-see mode. (This was based on the advice of my geneticist.) Neither of my children have HFI, but as with all of us HFI'ers, my children are both carriers. You may know the numbers already, but your spouse/partner would have to be an HFI carrier in order for your kids to get HFI. And even with their father as a carrier, it is a 50/50 chance for them to get it.

I hope this helps. Congratulations on your pregnancy, and let me know if you have more questions!

[colormist]

Thanks Julie! I was hoping you'd respond.

[ukbill]

Congratulations!

Being the father of 4 children the only advice I can give is Folic acid!

It just is not in our diet, as HFI'ers.

With out sufficient Folic acid you run the risk of your child being born with spinabifida (sorry if I've spelt it wrong)

It used to be common in areas of the world where few green vegetables were eaten.

In the UK Folic Acid is given to all pregnant mothers along with an Iron supplement. It is a combined pill which has a dire effect causing constipation.. like we need any more of that?

If you do get problems in that area, get hold of some Non Digestible plant fibre (if you are not already on some).

It is a great help in that department

Ispaghula husk works really good! But check with your doctor before you take it, as your pregnant

Congratulations again .. best wishes.
xxoo

[Kathryn]

Hello,

Congratulations! I completely understand your worries, I am HFI and I am currently 29 weeks pregnant. I was concerned when I found out that I was pregnant that HFI may have some sort of effect but I've had no problems at all.

My dietitian and metabolic doctor have been keeping an extra eye on me everything has been completely normal (so far!!!) I am taking the pregnacare vitamin which my dietitian looked into and has said it is safe for HFI.

Good luck with your pregnancy and I'll let you know if anything changes with me and if I am given any more advice, Kathryn xxx

[hfimomof3]

My experience was that doctors didn't really know what to do with the nutrition issues of HFI. The most popular prenatal vitamin at the time had eliminated vitamin A from its formulation but I don't get vitamin A from my diet hardly at all (no red or orange vegetables). So that was something I was unaware of. You should check your prenatal vitamin to be sure it has not just vitamin C but also vitamin A.

Also, since people with HFI may not eat as many vegetables you may take in less fiber than is recommended for pregnant women. Be sure to be aware of this and to take a fiber supplement if needed, because pregnancy makes you pretty constipated. Be wary of taking Colace long-term because my understanding is that it interferes with absorption of some nutrients??? YOu might check on this.

I thought the glucose drink for the diabetes test would be awful but I tolerated it fine even though it tasted terrible. Remember glucose should not make us nauseous. Just make sure to check with them that it really is glucose (same as dextrose) and not some new-fangled thing that has sucrose in it.

Last, I made sure to get the nurses to put on me a red alert band when I went for my deliveries that said: FRUCTOSE INTOLERANT: NO FRUCTOSE, NO SUCROSE, NO SORBITOL. These days you are not likely to be given IV fructose but you just never know. The allergy band should keep you safe. For hospital food, I just picked out the most bland stuff they had. Meatloaf without sauce etc.

[ukbill]

Just an additional note of warning..

If you need blood or a blood transfusion.. it will contain Fructose as it will come form a non-HFI person of course!

So you would need and additional "top up" of medical grade Glucose to stop you going Hypoglycaemic just to add to your problems at that time!

I second the Red band suggestion of hfimomof3

I was "red banded" recently when I had a very minor opp just in case!

[shereebailey83]

Thankyou so much for the responses, im so happy to have found this site and the advice from others is so appreciated.
I went to a dietician yesterday and i was hoping someone might have some insight. I don't trust dieticians at all and i haven't been to one since i was a kid. She recommended that i should introduce blackberries/blueberries/rasberries into my diet with natural yoghurt. I've grown up beleiving these were a risk food for hfi. Can anybody confirm if these are safe for us?? Thanks!

[shereebailey83]

Actually on top of my last post is it possible to get an insight of what fruit and vegetables that other HFI's are able to digest, i'm trying to expand my diet a bit as im in major need of vitamin & nutrient supplements?

[anastazya]

Try Kelp. I have no problems with it and it has lots of vitamins and minerals. (And I'm super sensitive to everything right now!)

[hfimomof3]

Your dietitian is incorrect. You cannot eat rasberries, blueberries, or blackberries. I'm not sure what she was thinking there. Was she trying to increase your vitamin C intake? You can eat limes I suspect. Have you tried limes? After eating limes you shoudl wait 30 min and then brush your teeth gently so you get rid of the enamel-destroying acid without eroding your teeth with he toothbursh.

I have never eaten yoghurt but i imagine in theory you could eat yoghurt without sugar, though that would taste terrible I would think. Is she trying to get more calcium into your diet? Can you drink milk?

In terms of vitamins and minerals, I would probably just tell the dietititian that fruit and almost all veggies are just not an option for you. Make a list of veggies you can have, and have her help you list what vitamins and minerals are in them, and in what doses.

I have some other ideas but the kids are bugging me right now. What specific vitamins and minerals are you concerned about?

[julienc]

Geez, what is with all the bad advice from our dietitians??

Berries are a definite no!!

Plain yogurt is safe - I really like the greek-style plain yogurt. I also eat a lot of cottage cheese.

I ate spinach like a crazy person when I was pregnant. I was anemic, so the extra iron (hopefully) helped. I still try to eat a lot of it now since I get so little green in my diet.

My veggie list is fairly short - broccoli and asparagus in small servings, cauliflower, and spinach as mentioned above. I also can do green beans (for some reason only the canned variety).

Good luck!! Make sure you've found a safe prenatal vitamin that you take daily, and you'll do just fine!!

[shereebailey83]

I have never trusted a dietician, my mum and i have solely relied on the internet growing up to ensure i eat the right things, i knew berries just didn't sound right so thanks for verifying that for me. I have always been underweight and i suffer from constant severe abdominal colic and i am always extremely tired, so everytime i gain a little bit of weight i get colic and don't want to eat for 3-4 days so i lose the weight that just took me 6 weeks to gain. My dietician is worried i will end up malnutritioned so she's trying to get fruits and vegies into my diet in any way possible. Do other people struggle with these issues?

[julienc]

Hmmm, it sounds like you may still have some fructose in your diet that needs to be eliminated. It's a mental shift that dietitians don't seem to understand: Fruits and veggies = BAD for people with HFI.

I struggled most of my life with IBS symptoms. I would TRY to get fruits and veggies into my body thinking it was what I should do. Once I learned of HFI and was diagnosed, it was very liberating to intentionally avoid these things knowing they were simply NOT GOOD for me. My IBS symptoms vanished and I never felt better. As for the weight thing...I wouldn't say I was underweight, but I am a tiny person. I did gain some weight once I got my digestive system on track, but this also coincided with having my babies, so that may be the cause, too.

I wonder with your fatigue and tummy troubles if you are consuming too much fructose somewhere in your diet? For me personally (disclaimer, I am not a doc!) I would take the opposite advice of your dietitian and make sure you do not consume any fructose and see how you feel. Be sure, however, that you have a safe multi-vitamin and take that daily.

[anastazya]

Shereebailey83....I would look into a good multi vitamin. That would take the place of your fruits and veges and would keep you healthy at the same time. I get one made for me...so I am guaranteed to not get sick from them and that they will have all the nutrients I need.

Good luck!

Sara