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My Sons Ttg High And Has To Remain On Gluten Till Test

mwapril

By mwapril
in Coping with Celiac Disease

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mwapril Newbie
mwapril
Posted

Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

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eKatherine Apprentice
eKatherine
Posted

I missed something. You know gluten is poisoning him, and you know he is healthy on a gluten-free diet. What do you need the test for? The doctor is supposed to be working for you and your son's health.

wolfie Enthusiast
wolfie
Posted

Can they get you on a cancellation list to possibly get your son in sooner? My son didn't even have his first GI appt scheduled until 8/15, but I called and they got us in last Friday and his endoscopy is today now. My son's ttg was very high, too. I considered just doing the gluten-free diet and skipping the endoscopy, but b/c he is so young and the gluten-free diet is for life, I wanted to get the endoscopy done since he was still on gluten.

Good luck!!!

Suzanne M. Rookie
Suzanne M.
Posted
Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

I found a lab in Oregon(I am in NY)that does gene testing with just a cheek swab. If he has all the classic symptoms and you want to forgo the biopsy like we did then I urge you to do this test. It will show if he carries the gene. I have found that doctors do not understand much about celiac. There are 3 of us in my family with it. First blood tests came back negative, then biopsies came back negative only to leave them with the only optionn left which was gene testing, BINGO! So, I chose to bypass all the traditional testing and found I have the gene. My son and daughter are now having the test done to see if they too have the gene. We think that if you carry the gene you need to eat gluten free, or pose the risk of hurting you body without realizing you are doing so.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

IMHO, doctors in this country are so far behind when it comes to the diagnosis of celiac. You know your son needs the diet. If you really feel you have to put him through the invasive procedure to 'prove' to the doctors that he is celiac then I agree you need to have the test moved up. Personally with the risk of the endo coming up a false negative and the risk of the procedure itself I would just get him on the diet. Everyone in our family is at least gluten intolerant and 2 are clearly full blown celiacs. The only one of us who was endoscopy proven is the only one who has abandoned the diet. She went to a doctor who is supposed to be an expert in celiac and was rebiopsied after a couple years on the diet. This 'expert' told her she has no damage, (of course not it had healed!!!!) and that she never did and all her problems were stress from my being ill. So now she is by herself, in a big city and who is going to help her on the nights when she is vomiting and seizing on the bathroom floor? Who is going to remove all the sharp objects and hide the pills when she starts getting depressed and paranoid? She is 19 and an ?adult? and we are helpless. Personally I put no faith in doctors at least not in the US. They are money driven and in the hip pockets of the pharmacutical companies. What are you going to do if the doctor says the endo was negative? Most likely you will put him on the diet anyway so why are you going to put you DS through this if not to just make the doctor happy..... and pay for his new rec room?

Guest nini
Guest nini
Posted

my daughter is 6. she was dx'ed by dietary challenge ONLY when she was 3... (well that and genetic predisposition, as I had just been positively dx'ed)...

if you have positive bloodwork results, your son absolutely has this, and I am aghast at the insistence of these Dr.s in putting children through the invasive biopsy, which may or may not show damage YET, just to prove to themselves that the elevated tTg's mean something...

my advice, cancel the biopsy, go ahead and go gluten-free with your son, if you want confirmation, watch how he improves on the diet. You DO NOT need a Dr.s permission to go on this diet, nor do any of us NEED a dx of Celiac on our permanent record. (I was denied health insurance because of it)

get your pediatrician on board with you and tell the ped. that you want a dx based on positive blood work and positive dietary response (positive dietary response is THE MOST valid diagnostic tool anyway)... if they won't dx Celiac based on that, tell em that's ok, you'll keep him gluten-free anyway, but you want his chart to reflect Gluten Intolerance. You have to treat it exactly the same as Celiac, as it's the same thing anyway.

Feel free to e-mail me and ask me any questions about having a kid on this diet... and don't put anymore money into the Dr.s pockets, you KNOW what's wrong with him now, now get on to the business of getting him better.

e-mail is nisla@comcast.net

Rice Cakes Newbie
Rice Cakes
Posted

Blood tests are not perfect and a doctor's verification may be useful or even necessary for some things. It's only a month and, unless the effects are life-threatening, an endoscopy and biopsy are probably preferable. Everyone in the world doesn't have celiac disease, and really if he has something else it's important to know that.

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eKatherine Apprentice
eKatherine
Posted

A positive result on a blood test is conclusive. It is only the negatives that are inconclusive.

Guest nini
Guest nini
Posted

no everybody in the world doesn't have celiac, BUT, you do not have to be consuming gluten for testing for any of the OTHER things it could be... why not try the diet and if it helps, you haven't lost anything... and having a Dr.s verification had NOT been useful in my case, in fact it's been a hinderance. I am healthier now that I'm off gluten than I ever was on it, and back then I was considered insurable... now I am considered UNINSURABLE because my chart says CELIAC.

Rice Cakes Newbie
Rice Cakes
Posted
... now I am considered UNINSURABLE because my chart says CELIAC.

Yeah I didn't think about any of that before you mentioned that up above. Yuck. Was it solely celiac disease that disqualified you?

GFBetsy Rookie
GFBetsy
Posted

If you really want to have a biopsy confirmed diagnosis, but don't want to feed your son gluten for the next month, here are my suggestions:

1. Call and get your son on a waiting list for cancelations.

2. Call again 2 or 3 times a day to find out if there have been any cancellations yet.

You will feel obnoxious, and the people in the office will get VERY irritated with you, but (believe me) the first cancellation that comes up they will offer to you, if only to make you STOP CALLING! As long as you don't mind making yourself hated at one doctor's office, you can acheive remarkable results! LOL

Oh, and while you are waiting for the biopsy appointment, you can start looking at dietary options. Since you are pretty sure that you are going to be going gluten-free with him, I would start looking for good websites/books that will help you learn about the lifestyle adjustments celiac calls for. There's lots of information on raising celiac kids, and there are more cookbooks available every day. I'd start out by making a list of all the things your son still WILL be able to eat (bunless burgers, hot dogs, eggs, fruits and veggies, baked potatoes, tacos (stick with homemade, though, lots of Fast Food joints add wheat to their meat), etc.). Check out the cookbook "Saving Dinner" by Leanne Ely. It's not technically a gluten-free cookbook, but most of the recipes are naturally gluten-free, and they are all really good. Then I'd find someone with some gluten-free baking experience to be friends with LOL. It's lots more fun to experiment with a buddy than it is to do it by yourself.

Good luck!

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