GI Dr. Update...UPDATE: Where to begin

[dragonflybay]

The Dr. said that he is very certain that he has a sucrose malabsoroption and not Fructose.He however did say that he probably does not have a lactose intolerance because you can not have a sucrose/lactose issue together. It just does not happen. He wants us to keep him on the diet he is on right now until we do an endoscopy because if we do and this is not what he has then we can do damage.

He said that Micah is very healthy and that we have done a great job on limiting his sugars and watching his diet. He said a lot of kids with this have under weight issues which we all know Micah does not. He said he is very healthy and happy and would not rush into this.

They want us to do a endoscopy to do biopsies from his esophagus through to his colon. There will take several biopsies to see everything they can and to make sure 100% that this is what he has.

This Dr. is very knowledgeable and is very well known in the medical world. This is one of his expertise. I felt very comfortable with his diagnosis and feel like a huge weight has been lifted from all of this then I was about the Fructose.

The Dr. said living with a sucrose intolerance is manageable. It will still be a challenge but manageable. He said there is a medicine available through the Dr. that can help him manage this and to eat more 'normal'. He said he will not outgrow it however will probably be able to tolerate more things once he gets older.

He also said to take his Pacifier away as this could be contributing to some of his gas issues. When you suck on the paci then you suck in air...thus putting gas into your tummy. This we will start doing and hopefully alleviate his night wakings.

Josh and I have lots to talk about still and I have come up with a few more ?'s to ask.

Thanks again for for all of your responses and I have learned so much from you guys! I think I may stick around and read some more of the posts. It kind of sounds like even though it is not HFI then he may still be following the same diet. If he does have the Sucrose Intolerance then we will not be doing the medicine until he gets older. This will be a huge undertaking to make this little guy as healthy as we possibly can!

Thanks,
Michelle

If you want to read some about this check out the link below. This is the simplest website I have found to understand this.

www.nevdgp.org.au/info/gastro/SUGARMALABSORPTION.htm

We took Micah into the Allergist on Friday and the allergist suggested that he did not have an allergic reaction to foods but rather he had a sever rash (to what I am not sure). He suggested we go to a dermatologist for this. He was scratching the entire time he was in Dr. office so at least he could see that he is bothered by it. He looks good right now but still itches. He put him on Zyrtec but I am afraid to put him on it because of the sugar.

He did agree that he most likely has a sever lactose intolerance and so we are restricting lactose even more now. (I did not realize it was in probiotics)

He did suggest we look into testing him for Fructose sensitivity. My husband and I are not so sure we want to test him at this age. I mean all we can do is diet anyway so we are trying to adjust his diet to a Lactose/Fructose and possibly gluten free diet. So if he does well with the diet then this is what he has. Or am I missing something to where he NEEDS to be tested? I know that HFI affects the liver so if we have him regularly tested for his liver counts would that be sufficient?

The allergist also suggested that we go to a gastro Dr. I called them this AM and can not get him in there until MAY that is four months away. My son is suffering RIGHT now and will be terrible in 4 months. I think this is unacceptable but that is what it is...it sucks! This is one reason why we want to do the diet now to see if that works. He may be having more going on then what we think but we will not know anything until we 1. try the diet...which hopefully in 4 months we can see a difference if this is truly what he has. 2. we get into the gastro Dr. and see what he has to say about his journal we are starting.

I have a few ?'s. Can he have Bananas? I have not seen them on the no list or I might have missed it.

He is sick with a fever last night and today so I am wondering what I CAN give him for his fever? I mean all the pediatric stuff is full of sugar. Same with the zyrtec but it does not say it has fructose in it but does not say any other sugars either.

I am sorry I have so many questions but I so new to this and overwhelmed with everything right now.

I really appreciate all of your responses and other posts throughout this forum.

~~~***~~~***~~~***~~~***~~~***~~~***~~~***~~~

I have read some of the older posts on here and I have a few questions for you all.

My son is 20 months old and we suspect he has fructose malabsorption. We suspected he had some kind of intolerance to sugar but after a lot of research then my husband and I feel that this is what he has.

My first ? is...where do we begin and what kind of Dr. do we need to see to start testing for this? We go next week to the allergist to start food testing because he had an allergic reaction to something two weeks ago (we have no idea what it is because nothing new was introduced).

My second ? is...what is the difference between HFI and fructose malabsorption? Is the only main thing the genetic connection with Hereditary Fructose Intolerance?

We figured out he was lactose intolerant at around 3 months as we had to switch him to formula and did terrible on everything but lactose free. At about a year our ped wanted us to try to put him on regular milk and that messed up his system so we tried soy and he got very ill. We had to cut out all milks and put him on pediasure for a month to give his body a rest and then started him on lactose free milk and has done good with that so far. Ever since he was a little baby he would do terrible with any kind of juice or pedialite. The sugars went right though him in the form of diarrhea usually yellowish and very watery. After taking that out of his diet for many months we gave him Gatorade (a bout an ounce) and he had blow out diapers for a few days and this is when it finally dawned on me we had a serious problem. We have not given him any sort of liquid sugar since then in the form of drinking. Since his allergic reaction we have been more aware of what the little guy is eating and I started to read labels more carefully. High Fructose is in a lot of solid foods to. I was not aware is was in so much 'food' and thought it was mostly in drinks. The doctors diagnosed him with toddler diarrhea about two months ago and that has not felt right to me so I researched that and he does not have that as we do NOT give him any sort of juice or anything they listed. We gave him pears not too long ago and the little guys tummy was upset once again. We have cut out all fruit but bananas. I do not think he likes any veggies as finger foods but will eat some as baby food still. Ever since he was very young he has had diarrhea. I have two older children and his pooping patterns are nothing like theirs were.

I am very happy I found this site and look forward to learning a lot from you all and hope that I can get some much needed help for our son. I appreciate you reading my story and look forward to reading your comments.

Thanks,
Michelle

[dragonflybay]

I was reading another post about an article one of the members posted and it said something about language delay. Is this a common thing with HFI or Fructose malabsorption? Why I ask is my son does not have many words that we actually understand. He says Daddy as Da and that is really about it. This weekend he started to make a moo sound with one of his puzzles that makes that sound along with woo woo after we say it. Da also means thank you or here. Ma means more. He pats my shoulder if he acknowledges me. Other than that he has no words. We will be getting him tested in a few months once we get this all figured out.

Thanks again,
Michelle

[Tammy]

There are so many possibilities of what the real problem could be that I wouldn't dare venture to guess. But I do think you are doing the right thing in trying to get to the bottom of what his problem is. Once you know, you'll know how to treat it. That is much better than just guessing and maybe missing something that could unknowingly be doing harm.

Many on here have gotten answers from a Geneticist. My daughter was diagnosed by an endogastroenolgist. That is the dept that she still sees as HFI can cause liver damage.

Good luck and I hope you can get anwers soon.

[colormist]

Hi Michelle,
If you do suspect some fructose issues, you might be safest to stick with a HFI diet (as it's more strict) first, then move onto a fructose malabsorption diet. I would definitely suggest ruling out HFI first (as the tests for malabsorption are not good at all for HFIers and they don't rule out HFI) with a genetic test.

The only problem is that the genetic test isn't typically covered by your insurance, so you'll have to try to coerce your doctor to bill it so that it will be covered. My geneticist suggested billing it as a hypoglycemia test (as I do have hypoglycemia) so it would be covered.

Definitely hoping for your son's sake that it's malabsorption, though and not HFI. I can't imagine going through life without sugars and without dairy.

I was under the general impression that malabsorption is typically something you develop over time and not something your born with. Can someone who knows a bit more clarify this for me?

Good luck and let us know if you need a clinic/office/referral. We're pretty scattered throughout the world, so we might be able to find someone somewhat close to your home.

[charlie]

Well now, having started to go more down the malabsorbtion enquiry with Megan I will put my pennysworth in here. Malabsorbtion appears to be an absence in the protein carrier that transpors fructose through the gut wall whereas HFI is an absence of the enzyme in the liver to break fructose down. There are it would appear varying levels of malabsorbtion and alot of people develop symptoms later maybe due to illness but with some they are born with it.
Your first priority is obviously to get the correct diagnosis and how you do this will vary depending on where you are in the world, I'm guessing you're american. To diagnose Megs at about the same age as your son is now we put her on an elimination diet and she lived on chicken and rice for 5 days literally plain boiled rice for breakfast and chicken and rice plain for lunch and dinner. Then we added in things bit by bit to see what happened starting with least likely to get her diet variable eg other meats and fish. However word of warning, use farm safe meats not cheap brands as they pump them up with sugar solution!!
We added a new thing every other day and kept a clear diary. When we added potato she was OK but the next thing I seem to remember was a veg like green beans and she had bad diarrhea so we went back to a few days chicken and rice and then tried a fruit and the same happened, in fact I think she vomited. We kept doing this and each time fruit or veg were added she got worse again, which is when the doc agreed to refer her. She had already been cleared for milk and wheat allergy though so we didn't have that to worry about.
However I have recently found out that the fructans in wheat can be a big problem for some with malabsorbtion and as we are still having issues on a very restricted fructose diet I have started to eliminate wheat as well and I'm getting quite hopeful that this may be the answer. I have found a malabsorbtion chat site through yahoo started by a dietitian in australia so if you think it may be more that then worth checking out too. The dietitian is Sue Shepherd if you google her a few pages come up with her advice.

Good luck, it is a very frustrating diagnostic process but hang in there, we have all been through it and are happy to help
Charlie

[CJSculpts]

Here is some links to information on the DNA testing:

www.bu.edu/aldolase/HFI/diagnosis/dean.html

www.bu.edu/aldolase/HFI/hfitest/hfitest.html

The researcher is Dean Tolan. Because his is a research lab & not a medical lab & also because there are not a lot of people looking for this test, he gathers samples until he has enough to run a batch. This can take from 4 weeks to 3 months so the sooner that you can get going on this, the better.

I am in the process of trying to get the testing done myself. Even though I am in a major city, I have not located a lab that will handle this testing without my supplying a "mail kit" for shipping the vials. I will be contacting Dr. T soon to see if he knows how to handle this. Otherwise, I have found a lab an hour away that knows what to do.

If you search for Tolan's last name on this board, you will find more member comments about him.

Best wishes,

C

[lisa]

Nathan had problems with his hearing early on and upon receiving his first set of tubes, we found out that he had basically been deaf due to the buildup of syrupy gunk in his ear drums. This was the reason he did not talk. Speech took off right after that cleared up. I tend to think that this was due to his FI issues as once he was on the diet we no longer had ear worries - but have no medical corroboration on that. Has your son had many ear infections?

I had also heard that DFI or fructose malabsorption was something that was not from birth, but acquired later. My experience is that Nathan has had issues since birth and the GI says he has DFI/FM based on a breathalizer test. I'm not sure what to believe at this point.

[CJSculpts]

SO, both HFI & FM will show up as positive on the Hydrogen Breath Test. (There are some FMers that produce methane instead of Hydrogen so they would need to be tested that way.) In other words, the positive test means that you or your child has one or the other. If you feel as though HFI might be a possibility, it is really worth pursuing further diagnosis. While FM will certainly make your life a living hell and, according to some schools of thought, may lead to further health issues, those with HFI are at definite risk of kidney and/or liver damage.

***WARNING: Testing an HFIer with the breath test or a fructose load blood test can be dangerous due to the possibility of a severe hypoglycemic reaction. Therefore, if you really suspect HFI vs FM & have not yet done these test, please start with DNA testing.

[dragonflybay]

Thank you everyone for your advice! I really appreciate you taking your time and reading our story and offering your advice! It is a world of help and I feel like I am in the right direction! Thank you so much again! We go get allergy testing in the next week. Once we see what that is then we will pursue the HFI.

I have one more ?... My son does not vomit on anything...he did when he got really ill around 12 months but has not done so since. It this always the case in HFI or does it only happen to some of you?

I think we are looking into the HFI diagnosis first so he does not have any bad reactions. I am looking into Dr. Tolan and sent him a message.

We live in Indianapolis, Indiana if any of you know any good Dr.s here or within a few hours I would love any suggestions!

Thanks again!
Michelle

[dragonflybay]

I put an update at the top in orange.

[charlie]

Bananas are no for HFI, for malabsorbtion however they can apparently be tolerated in small amounts as long as not too ripe.
Your question about do you need a diagnosis, this seems to vary, do you need one for insurance purposes. If not then do you need one for your peace of mind. I teeter between yes and no for this as I don't want to put megs through too much but at the same time you are always wondering whereas once you have a clear answer you can deal with it better. Whatever you decide you will find your sons reactions to foods will give you the clearest answers. It is would be worth defining between HFI and malabsorbtion which is what I am researching more now as there is the added problem of fructans in malabsorbtion but less restriction on other things.
Good luck

[dragonflybay]

Hello everyone we took Micah to the GI Dr. yesterday and his update is above in Green.

[charlie]

Hi, well at least you are getting some answers. why are you not starting medicine now? I understood that for sucrose intolerance you can use sucrase by calculating what is in the meal to help break the sucrose down. I'm not sure also I would totally believe can't have lactose intol just because he has sucrose intol, are you sure its not just because he just hasn't come across another case. I would tread with caution there.

good luck anyway

[ukbill]

Am I missing something here but why give him any sugars?

I have never heard of Sucrose mal-adsorption.. Sucrose is a mix of Fructose and Glucose.. so he will still be Fructose intolerant of one sort or another.. HFI or DFI.

Something else I cannot understand testing for DFi which is dangerous for HFI when the HFI test (genetic) can be done first.

If you are giving him foods that contain Sorbitol then that could be the source of the rash, or it could be nothing, children occasionally develop a rash for a few days which just as quickly disappears.

If an HFI Child dose not get a chance to "learn" what foods are safe and not (by feeding Glucose for example) then the semi automatic vomiting which usually protects HFI children might not happen.

It is highly probable that the aversion to sweet taste that HFI children have is a conditioned reflex. Feeding Glucose (or other sugars) to an HFI child could de-condition the child to accepting sweet sugary tasting foods and also mask a reaction to foods that contain small amounts of Fructose.

I hope this is not muddying the waters, but I cannot understand feeding sugar to a child that seems to have a sugar intolerance of any sort till you can isolate the problem clearly.

Wishing you all the best with your efforts to find the answers. You at least seem to be getting to see some phyisians who might be able to help.

Keep smiling.

[jejns1]

Hi,

While doing all my research on my kids' problems, I did come across a Sucrose Intolerance. It is called "Sucrase-Isomaltase Deficiency (CSID)". A website by parents is available.

www.csidinfo.com/

Good luck,
Janice

[charlie]

I think that is maybe what was Michelle was talking about, they first thought meg had this but opted for the fructose challenge first luckily. I was rather hoping it would be the sucrose problem as that is much more easily treated by replacing the enzyme. This can be done with sucrose problems as the enzyme is used early in the breakdown process of food.

[ukbill]

I stand corrected!

CSID is a new one on me but symptoms sound very like a few undiagnosed people on this site here who think they are DFI but fail the breath test..

CSID might be the answer.

Those with CSID are in luck because there is an Enzyme "semi"-cure for it, unlike HFI.

Apologies for questioning the diagnosis of your Specialist.

Hope you get sorted with an answer soon.