rgeelan

lol about the diet bit...

thanks for the info. I am curious if my father could have had it... he seemed to have a lot of the problems it causes... and i do to...

WOW! That is very interesting. I was just reading about not being able to take communion in the kids book I got... We just had our children baptized lutheran... Although I am sure if I brought rice crackers our pastor would be happy to bless them for our family durring communion.. But we have a very kind and understanding pastor....And a small enough church that they will all know about this in a week or so and be understanding.

I am A+ but not been tested for celiac disease yet, no idea what my son is... I will have to ask the doctors...

WOW! That is interesting to read because I haven't been diagnosed with celiac disease yet but we are testing our son and will get the biopsy back on Tues, he had + TTG blood tests.

I have always had horrible periods. I get sick as a dog, migrains, diarhea, vomiting sometimes... Heavy bleeding and cramps... I have been diagnosed with endometriosis and uterine fibroids and ovarian cysts... all have been diagnosed by surgery or mri/ultrasound. I just figured it was my luck, but since we have been reading and learning about celiac disease I have wondered if all my problems are related to it and I am a carrieer...

Ok I was just curious if anyone else had only the TTG come back positive and not the other tests? The TTG was what was positive in my son and that is why the doctors are pretty sure he at least is a carrier of celiac disease if he hasn't fully developed it. But I am just curious if anyone else has had this come back like this before?

Also I was wondering when they started to diagnose celiac disease? Cause in talking with my mother she said my father had problems that he was hospitalized for as a teenager and they diagnosed it as something else called Gaisbock's syndrome. "A condition in which the blood thickens because it contains too many red blood cells and too little clear fluid (plasma). It most often develops in middle-age men who smoke, have high blood pressure and take diuretics" This is a definition from the internet. Well his symptomsw were what i have read as common misdiagonses of celiac disease and he had a lot of digestive problems and bleeding ulcers and things like that... The problem is that he died 20 years ago and there isn't anyone alive in his family I could ask about this... I am just wondering if he could have had celiac disease and been misdiagnosed and that is where it came into our family.

I am sure I put this in the wrong area but I didn't know where else to put it since it is our son who has been diagnosed so far...

William did well with the biopsy and scope. The doctor took multiple samples from different areas of his stomach and intestines and stuff. He said he couldn't see anything wrong but that doesn't mean anything really... William wasn't all thrilled about everything but he did great so we took him to Toys R Us and let him pick out a new toy... LOL! The Dr said the results should be in over the weekend probably and he is on call so if he can get them and review them he might give us a call but since it is a holiday weekend it might not be till Tues when we actually get the results. The feeding test though worked... Yesterday he was fine all day because Wednesday he had a completely gluten-free diet... Yesterday we had him eat gluten and this morning he threw up... So after he could eat again we have gone back to gluten-free with him to see if that helps and the doctor said that in itself is a pretty good indication that he probably is celiac disease.

Anyway thought I would post an update. I have been awake since 4am and am just dead!!! So I am heading off to relax now.

Marianne I was thinking the same thing about the pizza causing such a reaction. I would be sure somethign like a PB and J on wheat bread would be worse. lmao! Actually I tried to give my son one for breakfast so he would eat and he didn't want it! Took like 2 bites and asked for one of our gluten-free rice snacks... LOL! So maybe this diet won't be so hard on him after all...

I hope we can both get good diagnosis whatever is causing this problem.. I have been concerned for a while because he grew so much and I heard it was normal to slow down but he almost has stopped! The doctors didn't worry about the height as much although he had always been off the chart in height before, but his weight had never gone below 95% untill he turned 2...

The specialist we are seeing said he is 75% certain that William has celiac disease just by his 1 blood test that was pos and his symptoms... If the biopsy isn't pos he said he is sure william at least has a strong gluten allergy and could develope celiac disease later so the diet is going to be a must anyway...

My daughter though has been all over the charts and I am wondering if she is celiac disease also but until William is confirmed they won't test Emma! She started at 5%, but she was 3 weeks early and we are at a high altitude. She was 50% by 2 months and then dropped again and was 25% by 4 months when we thought we had it figured out that she was allergic to Dairy. We took Dairy out and she grew again, but never over 50%. She had the RAST tests at 1 year and they all came back negative that she isnt' allergic to dairy, soy, wheat or eggs... She still has positive reactions to Dairy and major Soy though and I am questioning the wheat now... She is currently 30 inches and 19 pounds at 13 1/2 months old... 50% for height but only 25% for weight...

I really think that there is a lot more going on that we have yet to find out and maybe that will explain some of my health problems also...

I'm sorry to sound so stupid... What is a G tube?

You know, the difference I see between your daughter and my son is that my son was always big untill about a year ago he just completely stopped growing. He is 3 years 3 months... He is 41 iches according to our ped, 40 today at the specialist (95%)and was 38 pounds at 3 years and just under 35 today at the specialists(75%)... The other things all sound the same though...

WOW! That sounds so much like both my kids. And myself for that matter... We are all horrible sleepers. I always blamed it on my mom's theory that the house had to be pitch black and silent for a baby to sleep so I tried to let my kids sleep with noise and lights as much as possible and nothing helps... I am hoping it is one of the problems that is fixed for us... We still haven't all been completely diagnosed as celiac disease but my son has his scope tomorrow and if it is positive then my daughter and myself will be tested...

Thanks... The doctor went over things with me and he says that the blood tests that our ped ran 1 came back positive and it is the most sensitive and accurate of the Celiac blood tests. But the other 2 were negative??? Combined with my sons symptoms though he says he is 75% positive that he has celiac disease. He offered to do another blood tests and said that if it comes back the same way he would be 99% positive, but the base doctors won't take that as a positive diagnosis. William still has to have the biopsy for them to count it... So I said lets just do the biopsy since we will have to have it eventually... No reason I could see to put it off... Although the good news is yesterday we went all day gluten-free and he hasn't thrown up or had diarhea at all today!!! YAY! So the specialist did say that if it isn't fully celiac disease yet he would bet that he at least has a storong gluten allergy and is probably prone to get celiac disease later... So looks like our diet is going to change no matter what... A positive biopsy is the only way the base will test the rest of our familiy though...

We have our son scheduled for his scope and biopsy tomorrow morning at 8am and the doctor said to push the gluten tonight... We were thinking pizza since if he has celiac disease he won't be able to have real pizza again... Is that enough or is there something special I should do?

We started taking the gluten out today because we wanted to make him feel better and they said it wouldn't effect the tests done tomorrow or Friday, is this wrong? I am sure he would love a pb and j on wheat toast. lol!

Btw is there an easy way to find new posts here? I posted then it dissapeared and took a while to find it again. lol

Awsome thank you!

My son has been sick for about 3 months now and we are dealing with Military doctors so we had to go in multiple times over the same issues. He has a chronic stomach ache, he has diarhea and vomiting, just generally unhappy... 2 weeks ago they did blood tests and yesterday (after 2 days of calling and getting the run around from the clinic) our ped finally got ahold of us and told us one of his tests came back + for celiac disease. We go for more bloodwork tomorrow and then a biopsy on Friday. I am hoping that this is the answer to more than just why he has been sick the past 3 months, but maybe also to his mood swings and sleeping issues also.

If his biopsy confirms the diagnosis of celiac disease than my daughter and I will also be tested for celiac disease because she has the same symptoms he had as a baby and I have many of the common misdiagnoses...

Anyway just wanted to introduce myself.

Is this just Rice dream brand??? Cause my kids can't have dairy or soy and my son just tested + in one of his blood tests for celiac disease!!! They only drink the Wild oats brand of rice milk and love it... Actually I had noticed when I tried the Rice Dreams brand neither kid would drink it well...

We live up in Cheyenne, WY and our ped is sending us down to DCH to see a Dr. Hoffenberg. She said he is "the specialist" for celiac disease. My son just tested + on one test ( not sure which) but with his symptoms my ped and this doc think he is for sure celiac disease.