Thomas's scope is normal!!!! Now what???

[momtoandrewandthomas]

Hi there ladies.  It has been a while and things have been out of control with sickness in my house over the last month. (not really Thomas, it was Andrew with one thing after another) We had our scope today for Thomas and of course it was fine.  He shows nothing to her eye.  We will await the biopsy results and go from there, but I have a feeling those will also be negative.  It also seems in the last month or so that he is much less tolerant of his safe foods (milk and soy free).  AHHHHH!!!

I feel like we need to start over or something.  We have no idea what is going on.  We are looking into naturpathy right now.

Support would be great!!!!  I just feel lost right now.

[momtoandrewandthomas]

Also - not to be gross, but his poop has been full of food and black stuff that looks like coffee grounds.  I have no clue what that means.  And- he has not even gained an ounce in the last 4 weeks despite my efforts!!!

[Mydreamcametrue]

Oh Jen, I was going to PM you today because I was thinking about you and I knew his scope was coming up.  So glad you posted.

All this sounds like Zach all the way.  His scope was normal also and the biopsies. 

He pooped out all his food whole, I remember taking a stool sample into the doctor's office and well it was all green beans and looked like chocolate syrup over it.  How in the world they tested that... 

They thought he was not chewing his food, which he was.  For us though, his digestive tract was just wiped out of the good bacteria and he could not have any soy or dairy at all.

Once we went onto Rice milk, started a dairy/soy free probiotics, within 4 months he was fine.

We were able to add dairy back in.  That was at 18 months old. 

At almost 3 he was having reflux daily again, complaining of his tummy hurting, etc.  That is when we decieded to the endoscopy.  It did put my mind at ease knowing it was not EE or anything serious, but I was also very frustrated because you just want to know what is wrong.

I have been able to control his with what he eats.  I know for a fact SUGAR is not good for him.  If he eats like a piece of candy or cookie or cake, he gets reflux and says he is sick.

So now with Tyler, we have not done the endoscopy, but went the Natropath route.  I am Very glad I did.  She did the Carroll Food Intolerance test and he is intolerant to potato's and sugar and fruit within 4 hours of each other.

But, I will have to say I am now stressed more than ever because I have found out that anything enriched with vitamins B (Niacin, Riboflavon, Thiamin) are all culutred from potatos.  So since he can't have dairy, that also means no soy milk, no enriched rice milk. 

SO what I am saying, it is deft. a great thing to do, just be prepared to be very overwhelmed.  I feel like I can't feed him anything.  Really I just want to give up.

I would deft. try it though.

Huge hugs sweetie.  I know what you are going through. Please PM me anytime.  I am going to PM you my phone number also, so we can talk.

Wendy

[momtoandrewandthomas]

Thank you Wendy.  I will call you when I can think without kids climbing all over me.  My husband is really on board for the IgG testing.  I went to this PT class a month ago and the woman who gave it had it done and she has been able to control all symptoms with her diet.  I am now trying to track down someone in our area who will do it.  I think our insurance will cover it too if I go with someone registered with BC/BS.  I feel your angst and I am preparing for the worst.  Like my DH said, Thomas always does well for a time on any new things we try, but it never really fixes whatever is underlying it all.  That is why we are thinking alternative because they will look at the big picture and possibly be able to narrow down what the root of the trouble is.  I am starting to think gluten, but I have nothing left for him to eat if that is the case.  We are totally in the same boat.

[Mydreamcametrue]

Could be gluten, but is he was gluten intolerant (celiac disease) it will show up in his biopsies.  Well as long as they took enough samples.  I have heard someone has celiac and the first biospy was negative.

He could just be intolerant to grains themselves.  That is one of the things the Food Intolerance test test for. 

I just had the test done personally and will get my results back in about 5 more days.  Once I know what my food intolerances are, I am going to avoid them and see if "I" actually see a difference.  If I do, then I know for sure it will work for Tyler. 

I am a firm believer of anything can be controlled by diet.  Now would I eat all organic, natural foods, NO.  I am so used to certain foods it would be hard to change at this point in my life.  I have bought some organic all natural hotdogs and they were very gross to me, DH did not mind.  All Natural Peanut butter is not that good unless you add honey to it. 

Let me know what you find out...

Hugs, Wendy

[momtoandrewandthomas]

I agree, it is hard to change your habits.  Especially with kids that are not able to understand the reasons behind what we are doing.  I have a call into the ped right now and she is going to call me Monday.  I am waiting to hear back from the GI but I have a feeling she is done with him for now.  That is fine.  I just want to move forward.  I know that diet can make a huge difference.  We are trying more water and less juice and some Miralax to help him poop.  I just feel like there is something under there that we can't see that is the cause of it all.  I am still trying to find time to call BC/BS and see what and who they will cover and who will see a toddler and all that.  I think some of the stuff is silly, but knowledge is power.  Let me know what happens with you.  It would be great to hear what you feel
I still plan to call you.  Is there a better time?  After kids are in bed?  Let me know on here or PM.