Neg Blood Work, Pos. Biopsy? (any Help?)

[dahams04]

~Some Background~

My son just turned 3 last Friday. On Fathers day he woke to some vommiting, then that followed each day progressivly worse of not being able to swallow. Not even his own spit. His longest episode lasted 35 hrs!. He is tiny. He weighs 27 lbs and is 35 in. He was DX w/ poly (5 or more joints) Arthritis in December. He was put on Naproxen and they thought this caused an ulcer in his stomach( during the not swallowing phase). We stopped his meds during the not swalloing phase. While going through the not swallowing thing he was tested for everything but having all the same results come back fine. He had a Barium esophagram done which showed no problem. So the only Ped. GI around saw him and wanted to do a scope to see what was up... This is after a wk of no problems he was back to eating swallowing etc.

So he had the scope done, Dr said everthing looked fine. So I wasnt concerned anymore. Since he was acting normal again. Then a wk later ( Friday) the Dr calls and says he has Hunters biopsy results. ( I didnt even know he did a biopsy BTW!) He said it showed he has Celiac.. He said there was blunting and it was inflamed ( he biopsied 3 places, the small intesine showed the problem). So when he called he asked how Hunter was, I said he still is fine. So he ordered some blood work, (IGA tissue something and another like IGA something else). So we got that done on last Thursday. The next day Hunter woke up vomitting and not being able to talk again.. then I noticed his mouth had about 5 canker sores. This is the exact thing that happened last time. ( he had canker sores then too). I took him to the Ped and called the Ped GI. The day went on and my ped talked to the GI told him the deal and told me to put him on the gluten-free diet.

He has never had any bowel problems. Except lately he has had to push a lot more while making his daily BM. He ( the GI) said that when he wasnt swallowing for that week (off and on) he basically put himself on the gluten-free diet. So his body had a chance to semi recover. Then the next few weeks built up the symptoms agian which brought on this episode. ( does this make sense?)

So now his blood work came back today normal.... He has showed a lot of improvements since starting the gluten-free diet. His canker sores cleared up in 2-3 days. HIs speech ( which is delayed) totally spurted and he is now making sounds he couldnt do before. He also has shown NO symptoms of arthirtis. At all! While on the naproxen he had aches and occasional swelling of joints. Since being off hes had no swelling at all. He is jumping like crazy and his PT said that his last therapy session was the best ever! So what do you think/? SInce the blood work came back normal I dont want him on this very strict diet if he doesnt have to be. Granted with the improvments though.... Basically, if we had definate blood work then it would be easier for the rest of my family ,including my husband, to welcome the DX. Is the biopsy the ulitmate diagnositic tool? BTW- he did show to be a little anemic from the blood work.

I'm just so confused. This dx was thrown at me. I know so many of you were searching for it, I didnt even know it exsisted. Any help you all could provide would be great. I would really appreciate it. Thanx for reading, and in advance for your help.

BTW- I am waiting to hear from the GI I only talked to his nurse earlier. So I came to you guys while waiting for him.. Knowing you all have been through so much you would have a lot of answers.

[rinne]

Welcome. I am sure it seems overwhelming but just imagine, your son may not have to grow up with arthritis if his diet is gluten free. The diet does have a steep learning curve but the rewards are so much more than what is lost.

[Ursa Major]

Well, the bloodwork is not always reliable in children that small. If the biopsy was positive for celiac disease, then there is absolutely now question whatsoever that Hunter has celiac disease. He has to be on a gluten-free diet for life. And yes, I mean, for his entire life, even when he has fully recovered. He will NEVER outgrow celiac disease, don't ever believe that, in case somebody should say that at some point.

Anyway, the arthritis is gone, he starts to talk well, cancer sores cleared up, he has energy............you've got lots of proof that gluten is poison to Hunter. Be glad it has been caught finally, before he'd be crippled with arthritis, damaged by toxic meds, diagnosed with learning disabilities etc. Now he is going to be a healthy, happy, normal little boy by the time he starts school, yay! It is a reason to celebrate, in my opinion.

Your son wasn't anemic from the bloodwork. They don't take enough blood to cause anemia. Rather it is one of the common symptoms of celiac disease.

I hope he'll keep improving at this rate. Forget about your doubts, look at all the positive things this diagnosis has brought you and move on.

[2kids4me]

iF the biopsy showed blunting of the villi - it's celiac.

My daughter had bloodwork first and her anti-endomeseal antibodies were as low as they can get and still be called positive. The GI doc did the biopsy just to be sure celiac was ruled out, and see if there was something else going on in her small intestine. In fact the biopsy confirmed celiac (patchy subtotal villous atrophy) and The GI ordered her to go gluten-free immendiately . Total change in her health - no more canker sores, headaches, stomach aches, fatigue etc.

Go with the results of the biopsy. Bloodwork in children can be inconclusive at times (as can the biopsy). Others have mentioned genetic testing from Enterolab - I am not familiar with that - but if you wanted to pursue it further just to be sure - it sounds like the best route

[GFBetsy]

I think that the worst part about a diagnosis of celiac are those first days when you are thinking about all of the things your son can't eat anymore. One of the things that helps the most is to sit down and make a list of all of the things he CAN eat - fruits, veggies, meats, corn, rice, potatoes, etc. The list goes on and on.

The other thing that helps is that there is SO MUCH MORE information about celiac now than there used to be. You know, I had a great aunt die from this disease in the 20's. She was 5 or 6 and she just starved to death. My great-grandfather asked for an autopsy, because there was no reason for her to have wasted away like that. That's how my family first learned about this disease. Aren't you glad that your son is still alive? Not only that, going gluten free has made a wonderfully positive impact in just a short time! His joints don't hurt! He's playing! He's talking! And pretty soon I bet you'll notice that he's growing . . . WONDERFUL!

One more set of hints: I would recommend the gluten free cookbooks by Bette Hagman. She did a lot of research on gluten-free baking in a time when there was little or no information about how to make good gluten free foods. She has 4 or 5 cookbooks out, and they are very helpful when you are first learning to cope with this diet. I would also recommend the cookbook "Saving Dinner" by Leanne Ely. It's not technically a gluten free cookbook, but most of the recipes are naturally gluten free or are VERY easily modified. I always make gluten free dinners because I am not willing to cook individual meals for every member of my family. THis cookbook is one that I use ALL the time. If you don't want to buy it right off the bat, I would ask your local library to carry it. (The same goes for Bette Hagman's books). Libraries are often willing to purchase books that patrons request. Last of all, I would make the "Soft Batch Cookies" from Open Original Shared Link. Your son will love them, and so will the rest of your family - HONEST. I made 4 or 5 dozen of those cookies yesterday, and they are all gone. Admittedly I had a lot of people in the house (14 or 15, I think) but only 2 of those people had celiac. And it is amazing how making a yummy gluten free treat raises your spirits . . . suddenly you realize that this diet may not be so bad after all - especially considering the positive effects it has had on your son!

Best of luck! If you ever want to talk, feel free to PM me . . . I love to be encouraging! Can you tell?

Oh, and you and your husband had better be tested for celiac as well. It's a genetic disease, and you've got a 1 in 10 chance of having it because your first degree relative (son) has it. It has to have come from somewhere (unfortunately . .. )

[Guest nini]

there are no false positives, only false negatives, so if the biopsy was positive, your son most definitely has Celiac, no question about it. The blood tests have been proven to be unreliable in children, but a POSITIVE biopsy is an absolute. Now if the biopsy was negative, I can see why you might question it, but do not doubt the positive biopsy.

My daughter was 3 when we were both dx'ed... she has positively thrived on the gluten-free diet and we have a tremendous amount of food that we can have. Just focus on what he can have, not what he can't and you will be surprised at just how much is out there that is naturally gluten-free. If you want any hints feel free to e-mail me or pm me. Also there is a newbie survival kit I put together that you can get by simply clicking on the link in my signature below!

It's not the end of the world! Nope, just the beginning