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Skysmom03

Member Since 17 Oct 2012
Offline Last Active Jan 21 2013 09:01 AM
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Posts I've Made

In Topic: Spouse Now Having Reactions To Food Gah!

08 January 2013 - 04:08 PM

I believe a lot more people have it than they think, but because some have few to little 'noticeable' symptoms it isn't even considered! Some physicians, believe it or not, no very little about the disease or understand it!

In Topic: Coming To Terms

06 January 2013 - 02:03 PM

You can always try to call around about your situation and find out who would be willing to look into your situation and do the testing. Since you have no insurance, do you not qualify for any aid from the state? The only other option would be for you to go gluten free until you get a job again then reglutenize yourself and get tested.
You have to take care of yourself mentally though do you can get your life back on track. Once you do that, everything will work itself out! If you can accept that this may be what you have, you can work from there and things will improve, but you have to stick with it. Without an official diagnosis, I personally would have a harder time sticking to it since no one has actually told me I have it. You have to make the decision from the beginning that you aren't going to do that until you can get tested. It should be easier if you see improvements with the diet....... Oh and I would start with gluten first.... If you start getting rid of soy and diary and gluten all st once. You won't know what is actually doing the trick!

In Topic: Coming To Terms

06 January 2013 - 07:57 AM

Find a good doctor ( not necessarily someone you would just go too on the dour if the moment for the flu)!!! Tell him/her your concerns and symptoms and ask for a full celiac panel. Go from there. You are ahead of the game with the realization that food may be making you sick! I believe once you can accept that the rest will be a piece of cake. It will be difficult at first ( you are learning how to read labels doing research) but after a month or so it will be so much easier. Start out first with food you know have no gluten.... Salads, meats, rice, orators, fruits .... Ease yourself into products that are labeled'gluten free'.

In Topic: Biopsy Result At Last. Help Understanding It!

06 January 2013 - 06:24 AM

Oh and I forgot... At my sons first dr appt since his diagnosis ( he goes every three months because of his ADHD) he grew 3cm ( this was a month and a half after his celiac disease diagnosis) and his BMI had jump back to above normal. His BMI had started to drop in the prior year .... Even though he was gaining weight... And the celiac disease explains why!!) she was amazed at the difference a short period of time made in his growth!

In Topic: Biopsy Result At Last. Help Understanding It!

06 January 2013 - 06:20 AM

On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!

My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!

His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!

Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.

Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! 😄

Any help at all I don't mind helping. My name is Marti and my email is vagal74@aol.com if you'd like to email instead. Either way is good for me.