New to the board-Introduction

[perkykeri]

My name is Keri and my son's name is William(17). I don't even know where to start. We live Illinois,south of Chicago. My son is 17yo and diagnosed with FM in May. In Feb he had the intestinal flu and it never went away. He was tested for a lot of things and finally biopsied at Children's Memorial to rule out Celiac. (he is not Celiac)The only sugar he can digest is lactose. The funny thing is...he doesn't like dairy.

When my children were little I stopped giving them dairy because they were sick all the time so William never drank cows milk only rice milk. He started to drink cows milk when he was about 7 or 8yo in his cereal bc "dad" liked to drink it.(I can get him to eat scrambled eggs once in a while.)

Now when I think back, he has probably always had food issues. I didn't understand that maybe there was a reason where he would get so upset and bang his head on the floor at 13mos old beyond being a normal angry toddler. I had 5 little ones then so I didn't give emotional changes much thought. He has always been underweight though the Drs were never bothered by it and some of his siblings have health issues. His sister was diagnosed with gerd and ibs at age 7 with healed ulcers.His brother constipation and adhd.

He LOVES fruit and always has- the dietitian who called told me to cut out ALL fruit but to let him eat all the gluten he wants. We had already been doing a gluten free diet for 2 weeks(bc it helped with his D) so I let him eat a piece of bread-HA! that was not going to happen again so I looked online and found the FODMAP list of approved foods and we have been working on that since the beginning of May. He is doing better but it is a trial as everyone here knows. I am glad to have found these boards to give us the support we need. Thanks for being here.

[FMmom]

Welcome!

When I first started reading about FM, I found that there seemed to be two distinct groups: those that had problems almost their entire lives and those that developed symptoms after some severe gastro event. From your description it sounds like your son could be in the second group, which could be a good thing. That group seems to have much better success at reintroducing foods after the initial elimination phase -- and for some, if given enough time to properly heal their gut, the symptoms disappear entirely (but can return with another severe gastric event).

Of course I don't want post too rosy a picture -- you mentioned that your son may have had problems with foods his whole life. My daughter has had lifelong problems -- but I never knew it... She never liked sugar, I couldn't even get her to eat birthday cake! Weirdly, she always LOVED fruit. She'd say no to a candy bar and ask if she could have mandarin oranges instead. I'm not sure why her personality changed so drastically when she ate sugar, yet she handled fruit okay. You'd think something called Fructose Malabsorption would react terribly to, you know, fructose... Kaelin still misses fruit most of all.

You mentioned you have another child that has ADHD. Kaelin was diagnosed with ADHD even though none of the doctors nor I really felt like that was an accurate diagnosis. Almost all of her ADHD symptoms went away when we started the FODMAP diet. (My older daughter is most definitely ADHD so I don't want to come across as someone who doesn't believe in the existence of the condition!) Maybe, just maybe, your other child also has FM symptoms?

So, it is nice to "meet" you. I used to live in downtown Chicago, but we are in the Boston area now. The US is far behind Australia on recognizing this condition, but there are doctors that take it very seriously. It just may take awhile to find them. I hope you can find a good nutritionist -- that could be key in getting your son enough appropriate foods to feel full, yet pain-free.

[perkykeri]

THank you! I have drastically dropped bringing in junk food like I used to and do cook way more. William's mood is improving with this diet.(he was diagnosed as bi-polar many years ago but I haven't thought that accurate either) My other son- Is definitively ADHD but is actually embracing the FODMAP diet to a point. With so many of us living in the house, it is really expensive for us all to be on the diet together so the other kids are eating better just they get wheat products and William and I do not.
After what I have read so far AU is way more advanced than the US in research and recognition.