We're Back...getting Celiac Panel And Biopsy

[e&j0304]

Hey. We just got back from Jack's appointment. The ped GI seemed to think that he has celiac disease. He wants him to have the bloodwork done as well as a biopsy. However, we had Jack gluten-free for about 2 weeks starting Christmas Eve and he has only been back on gluten for a few days. I told him that and he didn't seem to worried about it. Do you think I should be concerned that his tests may be negative due to him being gluten-free?

I wish we would have never put him gluten-free, but we were just trying to do what was best for him. I am probably going to question the results now... This dr. was also surprised that our dd never had a biopsy despite neg results on blood tests and said that her symptoms sounded like celiac. He seemed to think she should be tested too, but she has been gluten-free for about 5 months now.

Anyway, thank you so much for your support and I hope this all goes well for Jack. I am to take him to the lab anytime for the bloodwork and he is scheduled for the other procedures next wednesday.

Thanks again,

Shannon

[Guest nini]

yes 2 weeks gluten free is enough to affect the tests... I don't put a lot of stock in the tests anyway... The CURRENT theory is that Dr.s only dx Celiac if there is extensive enough damage to show up in blood antibody tests and biopsies... I've heard too many stories of these tests being negative or inconclusive especially in children. Positive dietary response is sufficient to dx. Celiac or Gluten Intolerance, if the Dr. is insisting on this and saying that 2 weeks gluten-free won't affect the tests, he is operating on outdated and misinformed information. You need a Dr. that is up on the most recent research. Read Dangerous Grains if you haven't already and take a copy of this book to this Dr.

The real question is, How did your son respond to the diet? Did you notice ANY measurable improvements in symptoms? Two weeks is more than enough in small children to start to see results. The healing has already begun if Celiac is the problem.

Don't go around second guessing yourself on starting the diet. You made the best decision you could for your family at the time, and if you DID notice an improvement, regardless of what the blood tests and biopsy show, go back to the diet as soon as the testing is done (even before you get results)

Please keep in mind that even in people that did not go gluten free for any length of time, that there is a high percentage of negative blood tests and negative biopsies, yet a overwhelmingly positive response to the diet. Dr.s (IMHO) love to spend patients insurance money and run all kinds of tests... If the tests DO show up positive, then it would be a def. positive, but if they show up negative, you cannot rule it out. Ultimately the diet will either work or not... if it works then you have your answer. A biopsy can only confirm that there is significant damage that can be detected, it cannot tell you if someone is in the beginning stages of this condition...

[e&j0304]

Thanks Nisla.

I guess I'm not entirely sure how well he responded to the diet. His diarrhea was a less frequent, but the consistency was still much the same. It was after we put him back on gluten that it got REALLY bad. He is now vomiting after every time he eats and we don't know if that's related. He doesn't seem to be tolerating any dairy or soy at this point.

I never heard back from the GI today so i'll have to call them in the morning. I'm not sure I want to hold off on the procedures in order to allow him more time on gluten because he is quite sick right now. On the other hand, I don't want to put him through those procedures if they aren't even going to be accurate.

His dr. did say that he could rule out celiac with a neg. biopsy and I have heard the opposite on here, so I don't know if he just has old info on that or what.

I guess we'll see what tomorrow brings. This has been very difficult to go through a second time and watching him so sick is terrible. We will also get the results of his lab work hopefully tomorrow. They were checking for more parasites, c-diff, gerardia, and fat absorption. Hopefully those will show something. I can't believe that after taking in a stool sample that was pure liquid they would say "it's normal." But, what do I know??

Thanks again,

Shannon

[Merika]

If he is so sick after going back on gluten, I would do the tests asap, like today, and then take him gluten-free again, and just wait and see what the results are. There is no guarantee they will be negative, and there is no way to know if they'll be positive. Do the test, then the diet again (like immediately after the tests, don't wait for results). Between the two, you should get a feel for how your son is doing.

Merika

[e&j0304]

Thanks Merika. That's what we've decided to do. I am taking him in shortly to have his blood drawn and I am going to talk with dr. about moving up his biopsy, which is scheduled for next Wed. He is still vomiting with diarrhea and I can't stand seeing him this sick.

We'll see how it goes

Shannon

[taweavmo3]

Hi Shannon....just wanted to let you know I'm thinking about you guys, and hope that you get some answers soon with little Jack. Maybe, best case (still bad though) scenario....it could just be a bug??? Ben had Rotavirus when he was 10 months old, and his diarrhea at one point was pure water. He also dropped weight incredibly quickly, and had projectile vomiting. But, I'm sure they've already tested Jack for this, it's a pretty common bug this time of year.

It's so hard having such a sick baby and not being able to do anything to help. Let us know how your little guy is doing when things settle down a bit. Lots of hugs coming from us, take care!

[e&j0304]

Thank you all for thinking of us. Jack is still pretty sick. He has not vomited yet today, but also has not eaten anything. I can't even get him to eat one cheerio. He has kept down fluids. We just got back some lab results and he tested negative for all parasites and c-diff. The only thing that was positive was that there was blood in his stool.

Has anyone else dealt with bloody stools with celiac? I am so nervous about all of this that I'm a wreck. I hate seeing him suffer. He just seems kind of depressed and sad. He's usually such a happy little guy.

Thanks for any advice.

Shannon

[Guest nini]

it is so hard to see your baby so sick... it sounds to me that this GI is still operating on the "old school" mentality of ruling out celiac if no damage. I had a very interesting conversation with a pediatric GI that comes to some of the support group meetings... he said that just a few years ago, that was THE way to dx Celiac, and unfortunatly too many children went undiagnosed only to be diagnosed as teenagers or young adults after becoming VERY ILL... now they are realizing that there is so much that they don't know when it comes to Celiac, and they are having to look more closely at the blood tests and dietary response as diagnostic tools. A biopsy will only show when there is significant damage, but it doesn't show when a person is only in the beginning stages of the disease and hasn't accumulated enough damage to show up in a biopsy.

Good luck with it all, it may be the gluten he is having trouble with, and he may also have additional food intolerances or sensitivities or allergies... I remember when my daughter was so sick and vomiting and diarrhea all the time and I couldn't get her to eat for anything... It is so scary. {{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}} The good news for us is that after my daughter was on the diet just a few short weeks, she improved dramatically, by her four year well child check up she was gaining weight and was right on target for where she needed to be. She was able to get off her allergy meds and the Zantac... and the anemia and hypoglycemia went away. Today she is a very healthy 5 year old with an extremely healthy appetite. I wish the same for you and your child.

[e&j0304]

Thanks Nisla. It's always a little comforting to hear from people who have gone through this and had positive outcomes. I'm glad your little one is doing so well now. I am so worried about Jack. His dr seems very nice and is also quite concerned about him and stated that it is definitely not normal and he will figure it out. He said that it's never normal to have blood in diarrhea. He did also say, however, that he would rule out celiac with a neg. biopsy, so I guess he is still a little old school. I just pray that they can find something. If it truely isn't celiac, then I pray the find out what it is. After all, they can't just send me home with a 14 month old who isn't eating and bleeding in his stools 7-8 times a day. At least I hope they wouldn't do that.

Thank you to everyone for your encouragement. I'm a little nervous about his endo and colonoscopy. I hope he handles them ok. I wish they were sooner than next Wed, but that's what we'll have to wait for.

Thanks again,

Shannon

[Guest nini]

I just remembered that there was a few times that Chey had blood in her stool... I think they thought at the time it was just because her bottom was so raw all the time that it was just surface blood... still scary though.

Don't hesitate to pm or e-mail me with any concerns you may have... I may not be an expert, but I am a mom with celiac and a celiac kid... that's MY expertise! I think you are wise to try him back on the diet just as soon as the testing is done. He may need more than just gluten free, like he may need dairy free as well, maybe even soy free... give the diet some time too, even if the biopsy is negative, give the diet more than just a few weeks... some kids are soooooo sick before dx that it takes a while to see a real difference in the diet. But since you have noticed that he has gotten worse with gluten back in his diet, there may be a big clue.

[e&j0304]

Lately when I've posted a new topic on here I can't find it...

Anyway, I'll just update on here. We got home this morning from Jack's tests. The dr. said that everything looked normal and I guess he may not have celiac. He did take biopsies. He said that Jack still had a pretty good amount of stool stuck in there even after the enemas and laxatives. He said that could be "constipation with diarrhea overflow". We are to feed him lots of fiber and citrucil. He will be seen again next Tues.

I am really happy that everything looked great, but discouraged by no real answers. We don't understand how if he is so blocked up and constipated that he can have watery diarrhea that contains large chunks of undigested food, such as a green bean. How could that get by?? Also, what can be causing his stools to be so foul-smelling? we are still awaiting the results of his malabsorption test. We did find out today that his celiac panel came back negative although I don't have any of the numbers.

I don't really know how I feel right now. I will be thrilled for Jack if he doesn't have a problem with gluten, but I just want to know what's going on with him. He has quickly fallen down the growth chart and I'm not sure how we can expect him to grow with constant diarrhea.

On a positive note, we took Ella for her 3-year-check today and she is doing GREAT!! Her dr. was so happy with how well she's doing and growing. She has gained 4 pounds in the last 5 months since we started the diet. She is energetic, happy, and just an overall joy to be around. The dark rings under her eyes are gone and her hair is growing back in nicely. Her tummy is no longer distended either. It was so nice to go to a well-baby check and be able to say "No" when they asked if I had concerns about Ella. That hasn't happened in so long!

Thanks for listening and I'll keep you updated about Jack.

Shannon