Sherry and Erin

[answersforerin]

Hello Everyone! I am Erin's Mom from Ohio, USA. My daughter Elizabeth Erin is almost 9 years old and was diagnosed with Fructose Malabsorption using the Hydrogen Breath Test about a year ago now. We had her tested in January for SIBO (Small Intestine Bacterial Overgrowth) again using the HBT and that test was negative. For the SIBO test the DR's used Glucose and I have been told that this is not the correct sugar to use which may be why Erin tested negative. Honestly, I don't know what to think! We are currently on a strict elimination diet. Erin is eating only grassfed, free range meats and eggs, white rice (which we may have to eliminate), quinoa (which she despises), white potato, and 1/4 C raw cucumbers, 1/8 C raw carrot, 1/8 C green beans, or 1/4 C spinach or kale each day. We have tried reintroducing foods and have found that Erin only tolerates about 0.5g of fructose total per day. This was discovered through trial and error under the direction of a fabulous nutritionist. Unfortunately, Erin is still having skin reactions so we believe the white rice or eggs are to blame. Throughout the year long elimination, we began to suspect that Erin has some gluten sensitivity and dairy sensitivity as well. We are making due and celebrating successes along the way.

I will try and give you Erin's backstory briefly. Erin was hypoglycemic at birth and it took her two days to stabilize her sugars. We did this through breast milk. OUCH! is an understatement as they had her at the breast constantly. Everyone always asks if I had gestational diabetes, no I did not. I had no problems with my sugar at any point before during or after the birth. Once home Erin stopped breathing. I was told this was because she had excess mucous from not being squeezed enough in the birth canal - she was a quick delivery (thank you Pitocin). About a week after she was born we noticed Erin had a prolapse rectum. We began dilating the rectum and at a year they said that was healed. By a year old she was diagnosed with Raynaud's disease. By two we learned she had lead poisoning. By three she had Bruxism and had worn her teeth to the gums in the front. By four she had a spot of vitiligo on her neck. By five she was beginning to have trouble holding her urine. At six she began to lose bowel control. This is when our GI journey started.

Erin's initial GI diagnosis was Chronic Constipation with episodes of encopresis. We treated her with high levels of stool softeners, Miralaxx, Aloe Juice, Fiber, etc. for months. We even went to a vegan diet, but that is when her symptoms exploded! She was having serious behavioral issues, extreme fatigue followed by periods of insomnia, rashes, self harming behaviors, depression, suicidal ideations... and a return of the prolapse. We finally decided that the GI Nurse Practitioner that we had been seeing and the GI DR were looney tunes and made an appointment at Cleveland Clinic. The DR's at CC believed that Erin had motility issues and did a number of tests and work-ups on that end. The only diagnosis that came from all of that was "Fructose Malabsorption." We eliminated the fructose and saw some improvement, but she was having horrible bouts of explosive acidic diarrhea any time that she consumed sucrose which is supposedly safe or fruits and veggies that were supposedly safe. That is when it was suggested to me that we get her off the sugar completely. WHAT A DIFFERENCE! We still had symptoms but nothing like what we had been experiencing. With each elimination things got a bit better. She still had all the other issues but the behavior and the GI issues seem to be getting better. There are still some issues with constipation and we are beginning to suspect motility issues in some form, but my little girl who I had almost lost returned to us. We have a long way to go to get this figured out, but that is the quickie version of her story to date.

[Charlie Arnold]

Hi, welcome on board and thanks for your story. I have been following Erin's story a bit on facebook as you know and she does sound so like my daughter Meg and in alot of ways like Kaelin on here too, and as you have noticed we are all still seeking answers too.

The problem is what is causing what, do they just have incredibly sensative systems to any sugars and the whole of the intestines is reacting to everything or is there still an unknown condition out there still. That is one of the reasons for me starting this board to try and get more answers on the fructose malabsorption diagnosis that so many of us seem to have been given but it turns out to only be the beginning.

One positive personally I have found is that these kids do suddenly seem to turn a bit of a corner as they get older, or their systems heal better in time. I found with Meg until recently she couldn't tolerate anything with sugars or fructose without throwing off major reactions but suddenly this year now she is ten and has spent the last 6 years on fructose free diets that she can tolerate alot more. The problem though is the picture changes all the time probably due to combination factors or hormones and tiredness.

Its great that you have got Erin off alot of foods as I know that is the biggest struggle for those that start this diet later. They are not blessed with the inbuilt dislike of sugars that HFI sufferers seem to have, in fact they seem to crave it. I was lucky that Meg was young enough when we first started out on this journey to not know what she was missing out on.

So baby steps, and sounds like you are on the right track, its just a case of working out what are the worst culprits and what little bits she can have. But don't rush it, unfortunately life takes over and sometimes you just end up throwing some food quickly at them and you can bet your bottom dollar it has something wrong in it.......

Now I have a bit more time on my hands I'm going to try and build up a better amount of information on suitable foods, one thing is obvious the low fodmap diet does not suit alot of FM sufferers, so it is a case of picking and choosing.

Any way, keep us posted and anything we can help with we will. The more we can build up a picture of these kids that end up in the "grey area club" of sugar malabsorptions the more we can hopefully help future parents having to go through the horrendous trial and error that we all have to do.

Give Erin a big hug from us and a big thumbs up for being such a grown up girl and giving the diet changes a go.

All the best

Charlie