Jenybeen

Well, Isaac's appointment was a little disappointing. The doctor seems quite positive that the blood work that he did last year was accurate and Isaac had no "markers" and so Celiac isn't a possibility. When I suggested trying a gluten free diet just to see what would happen, he said that would be asking for more problems since we having such a hard time getting him to eat anything right now anyway. And like I've said before, Isaac doesn't eat fruit, veggies or meat, so the doctor doesn't think it's a good idea right now to take away the few foods that he WILL eat.

I'm not totally sold on ruling out Celiac...I've heard of too many false negatives, especially amoung children. A friend of mine has a neice with Celiac, and her mother heard our story and said it sounds exactly like what Isaac has.

For now, we turned in another stool sample, waiting for results from that. And the doctor prescribed an appetite stimulant to try and make Isaac eat more. This makes medication #4 that my poor little guy is on...3 times a day. My husband is a little upset, he thinks the doc is using our son as a "lab rat". I know the doc has good intentions, and is trying to rule things out and try different meds as trial and error...but geez, over a year of this is getting to be a little too much to handle. I hope the lab tests that are being ran this week will have us pointed in some sort of direction. Isaac has only gained about a pound and a half in the last year, and grown one inch. Not good for a child. I wish I could just "fix" him.

Thanks for all your help, everyone.

Oh! I forgot to add...I actually got him to try a pork chop tonight!! He ate about 3 bites...without gagging or throwing up! I was SO proud of him!! Maybe we're making a little progress afterall...

Jennifer

Crohn's is nothing more than a compliation of celiac that will clear up on the gluten free diet. A lady that I know thought she had Crohn's & then went gluten-free & the Crohn's is gone. She is a vetinarian & was already in the gluten-free cake business because she worked with a vet that had celiac disease & made gluten-free cakes for the office. I met her at my celiac support group. When picking up an order one day - I talked her into getting the Enterolab tests. She was positive for gluten & had a DQ2 & a DQ8. She said she felt better on day 4 of the gluten-free diet & was thanking me several times - & let me tell you she was plenty mad at the doctors for telling her all these years that she had Crohn's & never checking her for celiac...

Very interesting...My son actually tested positive for Crohn's via blood work, but when they scoped him, they said they didn't find any evidence of the disease. They did find that he had chronic stomach and esophagus inflammation, scattered eosinophils, and gastritis. But they said those things weren't a diagnosis of any one disorder. Can't wait to see the doc tomorrow and question him 'til I'm blue in the face! We've been actively seeking a diagnosis of some kind for over a year now, and that's after 3 years of our pediatrician telling us that Isaac was fine when we would ask about the diarrhea and slow growth...we had to pull teeth to even see the GI doctor!

Oh...Isaac also complains of frequent backaches and headaches...are either of those a sign of celiac??

Jennifer

Hi Jenni

Ok, no fruit or veggies? how about the fruit bars that are like fruit snacks?

how about trying salad?

I am small, but my daughter was realllllllly small.. they were classifying her as FTT.. Her blood work was positive since she was 4, but her biopsies were negative. The 1st 2 were definitively negative, where as the 3rd was in the gray area, the pathologist said to base it on her blood work, and we started the diet. lo and behold she has gained 25 pounds and like 5 inches this year..

I would not suggest that you do the gluten-free diet, only because if you do, you would have to reglutenize him for testing..

As for the gagging and vomiting thing, i have seen this before. There was a little boy in my daughters prek program.. It was classed as an O/T problem.. which means he may need occupational therapy.. The little boy i knew had it, and is fine today.. he vomited everthing..

Um, have you had allergy testing done?? I know quite a few people who tested negative on the gluten-free testing, and was proved to be positive thru an allergist when tested.. He could be extremely allergic to something.. This may be your best course of action. I know, I wanted to do the enterolab thing also, but can't afford it either.. Me, my testing has come back negative, but i have what could be symptoms of celiac. enamal loss on teeth, osteoperosios w/no reason, depression. etc..

anyway, vvvvv glglgl. let me know how it goes. lynn

Thanks, Lynn! Actually, Isaac DOES have food allergies, he is allergic to peanuts, milk and eggs (possibly outgrown the egg allergy). So he is on a milk free diet already. I think his limited diet (no milk products or egg products) is what made him such a picky eater, and the few reactions that he has in the past have made him fearful of trying new foods. Just my theory though.

We've tried the fruit bars...it's a no go. We see the GI doctor tomorrow for a follow up, and I'm going to see if they want to do another biopsy or what, before we try the gluten free diet. I don't want to put him through that again, but it's been a year since the last one...maybe something has changed. I am just so anxious to have a diagnosis already so I can make my son better! Right now I think it is either Celiac or Crohn's Disease...either that or some other rare, random problem that we haven't tested for yet.

I think his gagging/vomiting has more to do with the tastes of the foods, but I could be wrong. I'll ask about that tomorrow, too.

Thanks for responding!

Jennifer

Thanks for all the wonderful ideas, everyone! I tried to talk to Isaac last night about Celiac and the diet I'd like him to try out...he was SO upset. Tears and all. "YOU MEAN I CAN'T HAVE POPTARTS?!?!" LOL...6 year olds! Tried to get him to eat some meatloaf last night...wouldn't even touch it. Same with green beans. Everyone says to put the food on his plate, if he doesn't eat it then give him nothing else...he'll eat when he gets hungry enough, etc....But I am finding such a hard time doing this! I feel so guilty! And he just flat out won't eat if I do this! He's small enough as it is and is teetering on the bottom of the growth charts...I just think that any food is better than NO food at all. This is going to be a huge battle. I'm planning to take him to Henry's market (like Whole Foods/Trader Joes) this weekend and let him pick out some gluten free snacks and things to try. We'll start there I guess, and worry about the fruit/veggie/meat issues later.

If I eliminate all gluten...about how long should it be before we notice any changes? Really looking to get his chronic diarrhea under control.

Thank you!

Jennifer

Is there any single veggie or fruit that he will eat?

Dairy, such as milk, yogurt, and cheese can count as protein if he won't do meat right now.

Can you give us some examples of what he normally eats in a day?

-Sarah

No, not a single fruit or veggie. Amazing, because my other 3 kids LOVE fruit and 2 of them are veggie lovers! Guess I should've mentioned...Isaac (the son I am concerned about) is allergic to milk (and eggs and peanuts)! So there goes the dairy idea! So his food choices were already pretty limited...

He will eat: breakfast=waffles, pop tarts, dry cereal....lunch=Dino nuggets (from Sams Club, only milk free ones I can find), plain pasta, or a grilled (cheese-less) butter sandwich. Dinner=see lunch list. He loves graham crackers, plain crackers, chips, sorbet or popsicles for dessert...and I think that's it. He doesn't even like all the "kid" snacks like fruit roll ups and fruit snacks. He will only drink water, soy or rice milk, sunny delight and apple juice.

So...there you have it! Any ideas?!?!??!

Jennifer

Hi all. Well, I visited this forum a while back when my son was undergoing testing for Celiac Disease, and when the results of blood and biopsy both came back negative, I thought I wouldn't need your support afterall! Well...countless tests later (ruled out Crohns, Cystic Fibrosis, bacterial infections, etc) and still with no diagnosis for my 6 year old son, I am back.

I was thinking of trying to cut all gluten out of my son's diet to see if that changes anything for him. Right now we are dealing with chronic diarrhea (since toddlerhood), aggresive/irritable behavior, frequent headaches and backaches, and stunted growth. They've put him on Creon, a pancreatic enzyme, because they now suspect pancreatic insufficiency. We have not seen any improvement with him on this medication.

My question is: where do I start?? He is such a picky eater, and nearly everything he will eat has wheat in it. I'm thinking he's going to starve! He doesn't like fruits, veggies or meat and will gag and sometimes vomit if I force him to try one of those things. What's the easiest way to take all your child's favorites foods away? What can he eat? Should I even be attempting this?

I would love to do the enterolab tests, but can't right now due to financial reasons.

Thanks for any advice you all have!

Hear anything back yet?

Thanks for asking...been so busy I forgot to update you all. Well...we don't really have any answers, but this is what we know:

Isaac has chronic inflammation of the stomach and excessive stomach acid so he is being put on Prevacid. The colon biopsy came back ok with the exception of a high level of eosinophils (a type of white blood cell) which signifies allergic reaction, I guess. We think that means he is somehow getting something that he is allergic to in his system. We already know Isaac is severly allergic to milk and peanuts, he has been since he was a baby. I try to eliminate anything with even the tracest amount of milk in it, but maybe I am doing something wrong. And I know he isn't getting any peanuts...he wouldn't be breathing if that were the case.

The intestine biopsy showed no signs of celiac, but the doctor doesn't want to rule it out until the blood tests are back (which as of today, they are NOT and it's been over a week.) He said sometimes they could have gotten a "good" piece of intestine that doesn't show celiac, and there are good areas and bad areas. Something to that effect. The doctor said we haven't ruled out Crohn's Disease yet either, but with the biopsy, it doesn't look like it is Crohn's.

The doctor wants him to start drinking elecare, a milk substitute. He said the rice milk that Isaac has been drinking may have milk protein in it. I don't know how accurate that is though, because you would think it would be labeled on the carton and it says dairy free. Our main focus right now is to increase Isaac's caloric intake and control the stomach inflammation.

I am not satisfied with what we know...something is missing. I don't know what. I hope the blood results give us more of picture of what's going on. I just wish we could "fix" him.

Jennifer

We're home! And sooner than we expected, too. Isaac did really well. He screamed when they were placing the IV, but he was fine as soon as it was done. Watching him be put under anesthesia was the most difficult thing I have ever had to watch. First he was yawning, then he started screaming for Zachary (his brother), it was so weird. He was obviously hallucinating. That's when I broke down. I let my hubby hold him after that, because I just couldn't do it and I didn't want Isaac to freak out if he saw me crying. He was almost in a panic as it was. By the time he calmed down and fell asleep, hubby and I were both in tears.

After he was asleep, we went to the waiting room. My mom treated us to breakfast at the little cafe. I couldn't eat, of course, lol. After about an hour and 15 minutes, then came and got me, said he was crying for me. My hubby had to stay in the waiting room. On the way to go see him, the nurse said that he woke up right as they finished the procedure. I could hear him crying from down the hall. It was heartbreaking. He wasn't even fully awake, and was crying "Mommy, mommy" even though I was right there rubbing his hair and shushing him. I cried again. I didn't like seeing him like that all! He said he had to go the bathroom, so they unhooked him from everything and I carried him to the restroom and helped him. After that they gave him a popsicle and some stickers and removed his IV.

His doctor showed me some pictures and said that everything looked ok, except he had swelling in his small intestine. The took biopsies of the small intestine and his colon. We should have the results in 3 days. Isaac doesn't remember much, he just keeps asking me where I was when he woke up. He also keeps asking if I am proud of him because he was brave! So cute...I am. :-)

Whew! What an experience. I hope we never have to do that with any of our other kids. The procedure is a piece of cake, it's getting them there that's the hard part. I'll let you all know what we find out about the biopsies.

Thanks for all the prayers, positive thoughts and support!

Jennifer

I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer

Nicole just went through this at the end of july so it is still fresh. This is how it was at childrens in boston. But they have you arrive 90 min before (If general anesthesia is given) usually used for younger children. They check all vitals and don't eat I think 12 hrs before. They do paperwork I can't remember exactly why it took so long for the prep. But then the anesthesiologist came in and out to have nicole feel comfortable which she did. and even put on the mask for fun while waiting for the dr to get to the hospital (Traffic) but when it came time she did great she sat on the bed in the OR and they had me put the mask on her and Basically our trick was smell it (they have different flavors) And within 30 seconds she was barely consious (I cried it was the saddest thing you ever saw) Be prepared for that one. It took me by suprise but she did well. Despite the waking up procedure she looked uncomfortable and her Blood pressure was kinda high so it came down a bit and we left about an hour later. The procedure takes about 30 min. She slept the rest of the afternoon,Probably the anesthesia wearing off. They say no big activities for the rest of the day. Have a quiet afternoon.

I have to now do it again with my 7 yr old daughter sometime.

Should be interesting.

Good Luck and her results took 4 days to come back,Found out she also besides Celiac she has chronic gastritis and esophagitis and is now on prevacid and doing good.

Celina

Thank you Celina! This was so helpful!! I hope Isaac does as good as your little one did...I am so nervous. I have this fear of anesthesia for some unknown reason, and I have never even been put under! Crazy. But that is my biggest issue, putting him under. Thanks for the reply!

Jennifer

A couple questions about the endoscopy/colonoscopy procedure. My son's GI doc's office won't give me all the details til a week before, and it's a month away. I am curious NOW, lol! So if your child has had this done, could you please share some of the details with me? Oh, Isaac is 5 years old...Thanks!

1) What is the prep for it like?

2) How do most kids react afterwards?

3) Any uncomfortable side effects?

4) How long (typically) til the results are in?

Any advice on how to explain it to my son? I told him about it and he started complaining that he didn't want to do it...

Jennifer

Isaac was pretty upset about the thought of going back to have more blood drawn, so I called the GI doctor to ask if they can just draw the blood when he goes in for the endoscopy. They said yes! Woohoo! So they'll draw the blood for the celiac and Crohn's tests right before they pull his IV out in the hospital. Perfect. Endo is scheduled for 7am on Oct. 3rd.

Jennifer

OMG, I'd be so pi$$ed!!!!!!!!!!!!!!!!!!!!!!!! I feel for you...

I hope they find it!!!!!!!

What is it with the docs? Check this out - so I tell my son's (Izak too!) ped. who is really very cool, all about Enterolab and about how I really want to use them, because Ike's been gluten-free for about 4 months and his dietary response has been undeniable (this kid went from chronic yellow squirts to real brown turds!), and I explain VERY SPECIFICALLY that the test is a stool sample, and I need to use their lab because Dr. Fine has patent on his methods and the patient doesn't have to be eating gluten to get an accurate result, whereas a patient MUST be eating gluten to have an accurate antibody blood test. Pretty clear, right? Enterolab, poop sample, ok to be gluten-free. I mean, I get the CPT codes an everything, send her Enterolab's phone number, etc. So she emails me this today:

"I have a lab slip for the labs with the CPT codes and the lab can be done here and mailed out. It is a blood test, not a stool test, so he would come here and have the blood drawn. Would you like me to mail this lab slip to you so you can double check this with your insurance co to make sure this is covered? We could do an IgA test here, which is a blood test, and the test we normally do here."

!?!?!?!?!? I mean, it's a nice email and she's concerned, etc. but DUDE, he's been gluten-free for 4 MONTHS! I don't think a blood test is going to cut it! Grrrrr...

anyway, thanks for lettting me contribute to your rant. ;-)

Sorry you had to deal with such a frustrating situation, too...I mean, it's one thing if it was ME that had to go through it again, but I hate to have so much testing and poking going on with my child, know what I mean?

Jennifer

I just wanted to point out that you probably don't have to worry about moving it. My son was ready to take on the world after a couple hours. I would think that overnight he would be fine.

Sorry about the lost bloodwork. My daughter is a heart patient and has to get stuck ALL the time and it stinks. She is so hard to get a good stick with. Once in the hospital they stuck her 14 times and got nothing. Finally they got a dr. to come do a femoral artery stick. He did and finally got a sample. They put it in the vacuum system to send to the lab. The lab then called and said the lids had come off the samples in the system. I broke down crying. That was so hard, so I can really sympathize. I hope you get it all straightened out soon.

Hugs!

Thanks for the advice...I think we will still try to move the appointment. My husband has a really difficult time with anesthesia and I can't help but wonder if Isaac may have the same problem, so I'd rather be safe than sorry. Also, he is starting Kindergarten next week and I hate to have him miss a day of school so soon in the year...and I found out they have a day off of school on the 22nd, so I am going to see if we can do the procedure then! It would be perfect!

Jennifer

I feel your pain. Back in March when we took Zachary to have the Celiac panel drawn, the lab "forgot" to draw 2 of the 5 labs. We didn't find this out until an entire month later and the ONLY reason we found this out is because I became the lab's worst nightmare. I called constantly to get the results for the other two labs and became relentless when I wasn't happy with their answers. We had gotten the first three back in a reasonable amount of time, however when I questioned the other two they just kept telling me the others were in yet. I finally flat-out refused to get off the phone and demanded to speak to a supervisor. This woman researched the "problem" and informed me that she was sorry but it was an oversight b/c they were busy that day...........OMG, I went nuts!! Can you believe that??!!

The problem now was that Zachary had been strictly gluten-free for 4.5 weeks and they couldn't use any of his reserved blood from the other labs b/c they were now too old. I continued my tirade and contacted the head of the lab for the entire hospital and proceeded to leave him a scathing message explaining my situation. Needless to say, he got back to me ASAP and profusely apologized for the lab's irresponsibility and cavalier attitude. I knew when I called this guy that there wouldn't be a single thing he could do because too much time had passed and Zachary was already gluten-free. But I did want it clearly understood that labs like this CANNOT/SHOULD NOT be an oversight due to the seriousness of them and time needed to prepare for them. I truly do believe that he understood as he had no qualms about telling me that this situation is being "dealt with" as we spoke. He was very pleasant but clearly was not happy with his employees and the error. The fact that Zachary was a 3 year-old made it that much worse. At the end of the conversation, he gave me his full name and direct number to his office in the event I had experienced any other problems or needed additional help.

The funny PS to this story is that my husband is the ISS /Network Manager for the entire organization so he almost had a heart attack when I told him I went ballistic on these people. He obviously agreed, but his heart did skip a beat when he got my voice-mail.

Dang...sorry about that! It maddening, isn't it? I think I am going to call them before I take him to get it drawn again just to find out exactly what they think happened to the "lost" tubes of blood. Maybe also have them check to make sure they just didn't label his name wrong or something. I also want to file my own complaint, the doctor said they filed an incident report, but I don't think that's as good as hearing from the patient's mother...I have a few things to say! And I'll bet they try tp bill my insurance again, too!! I'm going to keep an eye on that, my insurance company shouldn't have to pay twice, should they?

Jennifer

(For those who don't know, Isaac is almost 5 yrs old with life long chronic diarrhea. We finally got a doctor who agreed that it is not normal, now that his growth is affected. We had bloodwork done over 2 weeks ago, and we're doing an endoscopy/colonoscopy in a couple weeks.)

Here's why I'm ticked off::

Isaac's doctor called me just now to go over the blood work. Well, the most important tests, the ones for Irritable Bowel Disease and Celiac Disease WERE LOST! WTH?! We got everything esle back, the CBC and the chemical panel thing, but they LOST the blood for the most important tests, the reason why we went to the darn doctor in the first place! And they don't even tell me about it for 2 and a half weeks! I am beyond mad! He said they filed an incident report with the lab...whatever. ..Isaac doesn't care about an incident report, he doesn't want to be poked again! Not to mention, they had to stick him twice the first time. I mean, I guess there is nothing I can do about it except complain and have his blood drawn again. Darn it. This is frustrating. It's not just the blood draw, it's the drive all the way down there with 4 kids in tow, too.

Anyhow, there were a couple issues with his blood results so they want him to have a sweat chloride test done to check for Cystic Fibrosis. And he had a high platelet count which the doctor doesn't have any answers for right now. He is not anemic though, which is good. The stool tests were fine, so his issue isn't with a bacteria or anything like that.

We're going to reschedule his endoscopy procedure because we realized his first soccer game is the following day, and I don't know how he is going to react to the test, so we want to be on the safe side and give him a couple days to recover if he has any complications. Hopefully we can schedule it for the following week, we're just waiting for the scheduler lady to call back.

I guess that's all for now...darn it, I am ticked off! Grr..

Jennifer

I posted here for the first time about a week ago. To read our story go here: Open Original Shared Link

And here is our update:

We saw Dr. Tran today, Isaac's new GI doctor. After a full exam and family history, the doctor thinks Isaac may have either Celiac Disease or Crohn's Disease, but it could also be a number of other conditions. Isaac had 6 vials of blood drawn (not fun!), and it took two sticks to get all that we needed. We are going to be taking stool samples every day for 3 days and running those up to the lab, and the office is supposed to be calling me in the next day or so to schedule an endoscopy. They will also go from the bottom up (if you know what I mean), so they can get a good look at his colon, too. I do not want him to have to go through all this, and I am scared out of my mind. Dr. Tran assured me that it is a routine procedure for him and that Isaac won't feel a thing...but still. So once the biopsy results are back in, we will take all the blood/stool/biopsy results and create the big picture and hopefully figure out what's wrong with my little guy.

The doctor said that right when he looked at Isaac he knew he had some growth/mal-nutrition issues. Apparently the visible veins on his forehead are a big sign, and something about the shape of his forehead in comparison to his head signifies mineral deficiency. These things can be reversed, he said. I didn't really understand all that, and he mentioned it towords the end of the appointment when my brain was already in overload. He's pretty sure the food that Isaac is eating is not being absorbed properly and is causing the growth issues. I am happy that someone finally sees that this isn't normal and we will hopefully have some answers soon. I don't want anything to be wrong with Isaac, but I do want the diarrhea to stop, and I want him to grow to his maximum potential. I wish there was an easier way to figure it all out though.

So for now I collect stool samples and wait for the office to call to schedule the endoscopy.

Can anyone tell me what to expect with the endoscopy? Thanks!

Jennifer

Yikes! That's a high fever! When my son had a fever about 104 they refused to let us leave the ER until it was down! I don't understand why they'd let you go home at all...he is obviously sick, and if it isn't viral, then it's something else! They need to figure it out before sending you on your merry way. I would call your ped and see what they say...and go to another hospital if you need to. I mean, he is burning up, you have reason to seek medical attention.

Good luck, keep us posted!

Jennifer

Hi everyone. I have an almost 5 year old son (Isaac) who has never had a solid bowel movement in his life. His old pediatrician dismissed my concerns saying my son had "toddler diarrhea". Our new ped (we switched 1 year ago) said that was just the way my son is...everyone is different. My son is shorter than all his friends, and his feet are as big as his 3 year old brothers feet. I know he has growth issues. I have just recently started putting the diarrhea and growth issue together. He also has severe food allergies to milk and peanuts.

Well, the bathroom problems with Isaac are getting worse...he goes 2-3 times a day, sometimes more. And just recently, when he has to go, he has to go NOW. He can't even wait for me to pull the car over at a gas station or something and he has had 3 accidents in the last month. He feels so bad, and I am so concerned at what the problem is. I was at the doctor with my younger son, and we saw one of the group partners instead of the normal doctor, so I asked her what she thought of the persistant diarrhea. She said it sounds like "Celiac Sprue", and REFERRED US TO A GASTRO. DOCTOR! Finally...someone is taking me seriously! It's taken 5 years for a doctor to tell me there may be something wrong, when all along I have known this isn't normal!

Isaac starts Kindergarten next month, and can you imagine how embarrassed he would be if he had an accident (poop his pants) because of having to wait to use the restroom? He would be devastated! I actually was able to get an appt with the Gastro doc for next week, and I am so excited about it. I want some answers! I have already taken Isaac back to the allergist last month to make sure the poop problems weren't stemming from an undiagnosed food allergy, and the only things that came back positive were the milk and peanuts, like usual (he's had those allergies since birth).

Sorry this is long...just wanted to vent and see if anyone has had similar issues with their child/ren, and see if you all think that Celiac could be the culprit for my son. Oh..and what should I expect at our first visit with the gastroenterologist??? Thank you!

Jennifer