Do we need a confirmed diagnosis

Noatak · Joined: 13 Nov 2005 Posts: 494 Location: Massachusetts

I was reading my Gluten Free Bible and came upon a section on this 504 plan. It's basically part of the American with Disabilities Act, which I have to admit, raised the hackles a bit. If making use of this solves a problem regarding ones Celiac diet, then that's fine and I hope all the effort works in return for you. However, I do not or ever would consider myself "special needs or disabled" because I cannot eat gluten. If someone becomes ill from Celiac's and is rendered unable to work for awhile because of it, I would view that as a temporary disability and they should be entitled to whatever legally works for them to get them back on their feet.

Most of what Guest listed as "special priviledges" to me anyway, are common sense items that should not have to be covered under any legal umbrella. If I were a teacher and knew a child had Celiac's, if they ran off to the bathroom more often, no biggy. I would never question anyone's needs in that department so why are things like these always an issue? You can bet the class would get an education on Celiac and how not to contaminate someone so that kid could sit with her buddies and eat lunch.
I think it's imperative to make any kid not feel so different than anyone else and to get by comfortably in this world without too much effort and aggravation on anyone's part.

It would be interesting to hear from some Celiac's who are presently away at college to see how they manuever through this concern or how other parents of younger children do the same. I would like to think these issues could be solved reasonably, without reverting to use of this act.

cruelshoes · Joined: 23 Sep 2005 Posts: 2679 Location: Washington State

I think the attitude about the need to be totally GF changes when you have a definite diagnosis. The decision to have an endoscopy on my 7 year old son was one of the most difficult I have ever had to make. But I would do it again in a heartbeat. Now I have pictures of his stomach and intestines, it is impossible to ignore the damage that was being done to him even though he was showing **NO** symptoms. You can see the polyps in his stomach caused by the irritation from the gluten, and you can see the ridges in the surface of his villi. I do not hesitate to pull these pictures out when someone comes to my home and asks what would be the harm if he had just one cookie. Shuts them right up. Yeah, it's gross, but don't ever offer my child a cookie after being told what the risks are unless you want me to go absolutely nuclear.

Being GF is easy as pie if you are eating at home and are very meticulous when you eat out. It gets a lot harder when you have to navigate birthday parties and scouting activities and cookie events with the first grade. Yes, we have a good attitude about it and have accepted it as a part of life, but it does add a degreee of complexity that is a lot to ask of a 7 year old. We have a 504 plan with the school, and they would not have even done one unless I had a form filled out by the doctor. She would not fill out the form until the endoscopy was done.

I would never try to tell someone what to do with their child, but I know we made the right decision for our family.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

Guest · Posted: Tue Jan 31, 2006 10:04 pm Post subject:

Sorry I wasn't signed in earlier. Duchess here again. When we enacted the 504 for Juleah she was GF for two years and suddenly became terribly ill. She missed more days of school than she attended and a whole day at school was almost non existant. It took quite a while to figure out what *else* was wrong with her. I wasn't educated enough on the diseases and afflictions that seem to attach to CD sufferers. Ends up she was also lactose intolerant and has GERD. It took even longer to figure out how to treat her new diagnoses'. My Point in bringing this up is that we were caught off guard with additional--devastating illness, even though we were GF for some time. The option for us was home school or a 504 modified class load. It was her principle's idea. We set up rewards for attendance, cut her makeup home work to 1/3 and gave her some privileges she would not have been afforded otherwise. It took the stress off of her, got her grades back up, and made her feel more understood. In no time she was back at school on a regular basis but the time while she was really--I mean REALLY --sick was helped by the 504. She no longer uses the 504 but would in an instant if she became ill again. We have discussed the idea of being Disabled by the disease. She has a great grasp on the reality of her situation. She knows she is limited only by herself. Anything else that comes along to *try to limit her is manageable. The 504 is one way to manage.Smart kid.

CKiddings · Joined: 26 Jan 2006 Posts: 29

I have a child who as far as I know is not celiac but he does have many other problems deaf/blind, dwarfism, chronic and restrictive lung disease...ect and so on the list goes on. Anyway, over the last 18 years that we have been in and out of Children's Hospitals I have learned some things. You know your child better than anyone else. You are your childs best advocate. You have the greatest and longest lasting influence on your child's outlook on life and lifestyle. I have had many great doctors who have saved my son's life more times that I can count on two hands, but I honestly have to admit I have had equally as many poor doctors who humanly made tragic blunders, rushed because they had other things on their mind and some who I sincerely believe just wanted to do as many tests as possible for the sole reason that they would recieve more money. I had to learn to assess benefits and real need to know and how to tell doctors, "No I don't think we will do that test at this time."

NickisDragon · Joined: 06 Oct 2005 Posts: 331 Location: S.E. Michigan

If that official diagnosis is really important to you, you might consider EnteroLabs testing which uses a fecal sample and is non-invasive. It's expensive but worth it, if you believe it's worth it.
_________________
The Love we withhold is the pain that we carry.
Nicki

B-Day: January 18
DX: October 2005

zoey · Guest

Goodmorning ...I am a mother of a 16 year old who has all the symptoms of Ceiac. We've spent the last 2 months in and out of doctors offices. We also see a NATUROPATH who suggested the problem was "gut". My daughter has been depressed, can't concentrate ,losing weight, abdominal cramping, nausea,heartburn, chronic fatigue and lethargy, achy etc. She was so active and working hard in grade 11. Now she is not going to school and can't seem to even work on her online courses. HELP!! Hopefully the bloodwork tomorrow will come back positive for CD and WE can go on a GF diet as a family. I just want to put her on it NOW. Do you think cutting down on gluten will alter the test results and biopsy? Poor kid..I am so worried as well. She is a "whole food" consumer so this new GF diet will not be difficult for her. She just wants her life back.Thanks for listening and I would certainly appreciate support from others ....[/quote]

Noatak · Joined: 13 Nov 2005 Posts: 494 Location: Massachusetts

Hello Zoey.....yes, cutting down on gluten can affect bloodwork and biopsy. However, it sounds like your daughter may have CD and it all depends on how important it is to you for her to go through an endoscopy and maybe get a diagnosis that way. Not everyone gets an answer from this mode of travel.

I had just about every single first and second degree symptom of CD and had the big blow-out and got sick. So sick I couldn't leave the house and go to work. When I went to my PC physician, she did the usual and wanted to refer me to a GI doctor....which takes time to get an appointment for. Doctor's don't generally rush everyone in overnight, even if you are very sick. I needed to find the problem and get back to work as, lets face it, employer's will only wait so long these days and won't keep your job open forever. So I called another doctor who I see for other issues and she had me come in immediately for the bloodwork. I was anxious to go GF because I KNEW I had CD so I did the bloodwork and went home. I immediately went GF and within 3 days (yes, I am telling the truth), most of my symptoms went away and I started to feel better. Not great, I was very weak and malnorished, but better and continued to get better every day. Bloodwork came back flamingly positve (I was in the upper stratosphere with the numbers) and that nailed it for me. The doctor didn't even say I needed to go have an endoscopy because my bloodwork was so bad and by now, I was feeling great on the GF diet. The reason I got fast results were the fact I was so sick, like your daughter, so the bloodwork showed it AND I paid cash for the second doctor so there was no BS with insurance companies and waiting for referrals, etc.

Do I have CD, even though I didn 't go the usual route? Yes, I do. Can't go near gluten and I also was very thin and underweight with anemia. Now I have gained 5 pounds and have to watch my diet so as not to gain too much. First time that's happened my whole life!

There is also the gene testing that would give definitive results, even if you are GF and you wouldn't have to wait for all the other required tests. Whatever you decide, good luck and best wishes...I know how your daughter feels and it is horrible to go through...especially when it takes forever to get diagnosed! I know how it feels to just want your life back!