New...need HELP

[angelad]

I am new here, but have been lurking for a couple of weeks. Our story is LONNNNNG, and applies to three kids and one adult. I'm putting my post here because we are starting with the 25 monrh old, as far as getting a diagnosis.

To make the long story short, all three of my kiddos have had extremely unhappy infancies - screaming, crying, diarrhea, reflux, NO SLEEP, rashes, abdominal pain, heartburn, hypoglycemia, etc. There's more, but those are the highlights. As my 9 year old and 12 year old got older, the diarrhea has changed to constipation. They have "reacted" to just about everything except meat and white rice. We knew it from the beginning and started elimination diets practically from birth with the oldest. We've done every diet on the planet, and do know we have celiac disease. We've done a lot of biomedical intermention - vitamins, healing regimes, enzymes, etc. We never saw the great results everyone else had. Because the kids reacted so violently to fruits and vegetables, we chalked up the sensitivities to salicylates and amines. We just couldn't figure out how a pear or a couple little bites of winter squash could cause such horrible problems. We commented with all three kids that the days we had no fruit or veggies, they slept. But we thought we HAD to have fruit and veggies to be healthy...I nursed all of them exclusively for six months, during which time they did react to things in the breastmilk. Beginning solids made the nightmare even worse.

My 25 month old is still nursing some. He has had a diagnosis of failure to thrive in the past, but is doing well now. He started gaining weight when we started focusing on the proteins and fats, and left off the brown rice, fruit and veggies.

At the beginning of May, my research turned up info on fructose malabsorption. I dismissed the possiblility of HFI because we've never been to ER with health issues related to this. We decided to try the fructose malabsorption diet. We noticed on the days we had the least fructose, the kids and I did better, but still had big problems. I made sure we had a huge excess of glucose:fructose. Finally, I realized that I needed to pull all fructose and sucrose after a particularly nasty 24 hours following some homemade lemonade. We did meat and rice only and, within 36 hours, I had totally different children. I'm not being overly dramatic.

Larger amounts of fructose (in the past) have brought on extreme diarrhea and fevers that lasted 48 hours. The doctors told us it was some kind of recurrent viral issue. A review of my diet diaries showed that we had given Christopher a pear and and blueberries the day one episode began. All of the episodes I have notes for showed a relatively large amount of fruit/veggies on the day they started.

Looking back over my history, I probably have this, too. At the very least, I am heterozygous and have a reduced enzyme capacity. I can detail my symptoms in another post. This one is getting really long.

So, last Tuesday I got my son in to see a gastroenterologist. The doctor did listen to us and ran a bunch of blood tests. I doubt they will show any of the problem areas because we had already been fructose-free for over a week. He also found blood in the baby's stool, and suggested an upper and lower GI. I think there is just so much irritation from the diarrhea that he needs some time to heal. In any case, he agreed to look over the labs and try to get us in with a metabolic/genetic specialist first. We are still waiting to hear about those things. My family doctor thinks I am 100% correct and is going to try to help us get to a metabolic specialist if the gastro isn't helpful.

We have been trying to figure out this diet. If we eat only meat, white rice, a little bit of egg, olive oil, goat milk, and a small amount of dextrose, we do great. I've tried adding in a few bites of kale or even some potato, and we lose all of our progress. When we had a couple bites of kale, Christopher got very lethargic and had diarrhea within two hours. Then he got ramped up and hardly slept for two nights. When he did sleep, he twitched and jerked terribly. The older two had tummy aches, abdominal pain and distension, insomnia, and hypoglycemia.

If we stay on meat and rice for a while, will our tolerance improve? I read about all the things people on this list can eat and would love to be able to eat some of them. A few bites of green beans would be heavenly, or a few potato chips. It seems everything we try causes the same symptoms. Any thoughts?

I've learned a lot from reading the posts here and will update as soon as we hear from the docs.

Sorry to be so long. I am desperate for some encouragement...My girls see the difference in how they are feelilng, but are distressed about the diet. I would like to tell them that they should be able to add a few things soon.

Thanks in advance for any advice.

Angela

[kim55]

Can they tolerate cow's milk, or is lactose a problem too? How about yogurt?

[charlie]

Hi Angela, welcome to the board, sounds like you may have found the right place, your story sounds very familiar.

Firstly, take a deep breath. Where abouts in the world are you as someone in your area may be on the board and know where best to get medical advice from as countries do seem to vary alot. Also food names vary too.

Your start sounds good, start simple with foods sticking to what suits. I always go back to white rice and chicken if my daughter has a reaction. download the diet sheet from the boston university site or send your email address by message to me and I'll send you a copy of ours - if my ancient computer lets me!!!
To start with don't try and add in any vegetables or fruit and be careful with dextrose and you should find symptoms will clear up quicker. Then your daughters will hopefully realise how much better they feel and feel more inclined to stick to the diet.

Keep reading, and posting and hopefully we will all be able to help you. we have all been through it in some degree or another.

All the best

Charlie

[hfimomof3]

I would not necessarily say they have HFI. Diarrhea and lethargy could also be an allergic reaction. Allergies don't always express as hives and breathing difficulty. A certain type of allergy called FPIES expresses as diarrhea and other symptoms (I am not so familiar with it but I notice parents of those kids complaining their kids sleep poorly when they are reacting to a food). These uncommon presentations of allergy are, uh, uncommon, but of course so is HFI so you might as well consider allergies too.

There are children who, rather than having HFI, are allergic to many foods: it could be the FPIES that I mnetioned above, or the more well known IgE allergies that produce hives and so on. For those kids, it can take a long time to diagnose that because there are so many triggers to keep track of. In theory, a child could have HFI AND be allergic to some foods. I think it would be hard to figure out what was going on for that child but a careful food diary such as you are doing would help a lot. Keep it up!

There is also a condition called eosinophilic esophagitis which is also allergic in nature but a non-standard type of allergy. These kids tend to have bad reflux, stomach issues, and often react to a number of foods. Again, it can take a long time to diagnose it.

It would be fairly unexpected to have three kids who all have HFI as the condition is recessive. It should only show up if both their aldolase genes are defective. However if you and your husband were both HFI (maybe you bonded over your mutual hatred of fruits?) then yes all your kids would also be HFI.

I'm glad you're here, this board can give you information to help you figure out what's going on. I would also check out www.kidswithfoodallergies.org. You might find there some other ideas to pursue with your doctors.

[Angela]

Thanks to all who have responded so far...keep the messages coming...I will take all the help I can get.

To answer the questions that have been asked, I live in northern Virginia, just outside of Washington, D.C.

Cow's milk seems to give the kids problems with sleep, but doesn't cause gastro problems. I limit them to a little bit of butter each day. We drink raw goat's milk with no problems and I make my own yogurt with it. We have been completely casein free in the past (for a whole year) and adding in goat's milk didn't make any difference, but the cow's milk did.

hfimomof3 - I've heard of FPIES before, but had forgotten about it. I read up on it today, and I suppose it is possible, but my kids react to EVERY food that has fructose. I find it hard to conceive they would be having an allergic reaction to every fruit and vegetable on the planet. They can eat white rice, but not brown rice. In addition, we have labs that show elevated liver enzymes and high tyrosine, as well as some other assorted labwork that correlates with the diagnosis criteria for HFI. I will mention FPIES to the gastro doc, though, and see what he thinks.

It would take a book to detail every doctor we've seen, from conventional gastros to environmental medicine docs, homeopaths, herbalists. We've been treated for allergies, gut dysbiosis, lyme disease, thyroid problems, neurotransmitter abnormalities, hormone issues, genetic issues (MAOA, SUOX and MTHFR mutations), etc...some of these had some hard core lab justifications, some were to try and see if they helped. Since we have been fructose-free, we have seen complete eradication or nearly complete (rashes ALMOST gone) eradication of symptoms. My kids seem normal! I told the doctor that if we were negative for HFI and couldn't find out why we are having these reactions to food, she was going to have to put us all on sleep meds, gastro meds, and anti-depressants to deal with being on a regular diet. I don't necessarily want to have HFI, but something is wrong. If it isn't HFI and can be fixed, I want that to happen. At this point, I have been so sleep deprived and exhausted from dealing with the kids' issues for nearly 13 years, that my health is very poor. I am ready for us to all feel better. If that means meat and rice only, then so be it.

As far as it affecting all three kids, they all have labs with some indicators and very closely related symptoms. I can turn the symptoms on and off with fructose foods. That being said, my oldest seems to tolerate a small amount more fructose than the younger two, but she is also the one with the highest (definitely out of range) liver enzymes). No reason was ever found for the elevated enzymes.

I am following the diet, too, because I am still nursing the baby and because I have such severe hypoglycemia, insomnia and stomach pain, as well as frequent urination and headaches. Lo and behold, being fructose free has eliminated those things. I've NEVER slept this well. I drove my parents nuts when I was child with the insomnia and tummy aches. I absolutely hated fruit and almost all veggies as a child. My mom always had Kool-Aid in the house, and I refused to drink it. I lived on meat and bread.

I know a lot of sites say you have to be homozygous to have HFI, but I've also seen studies that show heterozygotes who have reduced enzyme capacities. I wonder if my husband and I are both carriers and managed to pass it on to all three kiddos. He does have problems with hypoglycemia, but he can eat some fruit without trouble.

Obviously, we don't have a diagnosis yet, but the doctors think something is going on at a metabolic level. If it's not HFI, it's something else very interesting.

I've got the Boston University website practically memorized. I am amazed at the foods allowed on the list. I think it said people with HFI should be able to tolerate 40 mg/ kg fructose per day?? We can't seem to handle more than 10 - 20 mg TOTAL per day. I really hope that gets better.

Thank you again for all your thoughts and kind words. Sorry to be so long-winded.

Angela

[Angela]

One more note to hfimomof3 - I hope my response didn't come across wrong. I really do appreciate your input on the allergies. I am going to talk to the gastroenterologist about it. I know he mentioned taking biopsies and looking at mast cells, eosinophils, etc.

One of things we pursued very strongly in the past was unconventional allergies. We saw a well-known environmental allergist who put us on an unusual foods diet. We ate stuff like venison, ostrich, dragon fruit, and jicama, but no "regular" foods for a long time. No change. We also did Enzyme Potentiated Desensitization. No change. The environmental allergist was stumped.

All that to say we've done a lot with the thought of allergies, but I am still open to possibilities.

It sounds like you have a lot of experience, and I would love to hear any advice you have. I had put aside my diet diary in the last week, mostly due to being tired of dealing with it. After reading your comments, I think I will start it up again to chronicle our fructose-free diet and any attempts to expand the diet.

Thank you again!

Angela

[Tammy]

Hi Angela.
Welcome to the board and glad to hear you are no longer a lurker. Although lurking is a great way to start off and get the feel of the board and past posts/ideas.

It sure sounds like you are on the right tract. You did all the right things and congrats on being able to find the few things that make it better.

Mostly when someone new starts the diet, it's takes awhile to "cleanse" the whole system. Once it's better and healed, then you can try one thing at a time and slowly build your list of safe foods. Everyone's list is a little different. Some are a lot more tolerant than others. It's something everyone has to find out for themselves over time.

I am in PA so I'm just a little north of you. Once you get to the point of being able to try things, I may be able to help with products in our area. Example, Smithfield should be in your area, and they make a sugar free bacon that works well for us.

Another thing to keep in mind is that there are many mutations that can cause HFI. Not all of them have been identified. My daughter, Regina, is an example. She was DX with a liver biopsy so she is definate HFI. But her mutant gene is different and the blood test shows negative for HFI. She is not a text-book case but the diet is the same.

Again, welcome, and hang in there. It does get easier...........

[charlie]

Hi angela,

regarding the % of fructose allowable, this varies from case to case as you will find as you experience more of the board. My daughter seems to not be able to tolerate even the tinsiest bit. They are very slow over her in good old great britain at doing definitive tests so are still saying she is fructose malabsorbtion rather than HFI but very reactive so your kids may be the same and the bowel is so reactive it just can't cope with anything.
so to start cut out as much fructose as is humanly possible and if poss cut it out for several months, let the bowel, liver etc recover and then try small bits here and there, but keep a clear diary as some of us find it takes a few days for the reaction to kick in so you may need to cross reference.

Thats great if Tammy is "in your area" as she can help with products the kids can try to keep life as normal as possible.

Good luck

[lisa]

Your bodies are likely completely polluted with fructose from the past. It will take a while for your systems to recover. That means extreme limitation of fructose containing foods to avoid reactions - if HFI or FM/DFI are truly the culprit.

It took several months of a diet consisting chiefly of milk, yogurt and chicken for my son to stop craving fructose/sucrose containing foods and more than a year before he could tolerate some of the foods that are on the larger diet list.

Good luck! Sounds like this has been a rough road for you all.

[ukbill]

Liver damage particularly with children can take years to fully recover.

You can go months and months without an apparent improvement so don't give up..

It took 6 to 9 months for me to start to recover from my "Challenge " test.. well they did give me 10x the correct amount of sucrose and then fructose intravenously..

Luckily my Liver was not in too bad a state when they started, thank goodness.

Dam near killed me on the spot.