Now I Don't Know What To Do....endoscopy Results For My 6 Year Old..

[mommy2krj]

Let me apologize right off the bat because this is probably going to end up long and rambling. But my brain needs to figure this out. Also...I'm fairly certain I should be relieved at this point....but I'm not sure that I am. Anyway...

 

History: 6 year old who started complaining that his stomach hurt in January (probably sooner but brushed it off for a little bit). Every. single. day. Took him to the doctor, got Miralax. Also, he was probably more regular than anyone else in the house up to this point. Never really complained that it hurt to poop or that he had to really push it out. Decent bowel movement at least once a day. Give him the miralax and it quickly progresses to diarrhea 12+ times a day for over a week. He lost weight. Which for my tiny little guy...probably isn't a good thing. Also, randomly vomiting....which was being chalked up to a virus until I started really noticing that no one else in the house ever got sick like that. Not normal. Take him back to the doctor because now the pain is worse....and localized (older son had his appendix out in 2nd grade...it wasn't quite that bad....but close) this is the second time in his life now that he's had pretty bad pain that was localized like that....he was much younger the first time and it was definitely worse that first time too, pain wise. Doctor gives a prescription for omeprazole. Give that to him (with lots of doubt given he's never had any known issues with acid reflux, but I'm not a doctor) nothing changes and pain gets worse.

Get the referral to the GI (actually got that after the first visit but it took FOREVER to get in to see them!) and finally have appointment. They do the blood work for Celiac and recommend we do a miralax cleanse in the meantime and we set up the endoscopy. Start the cleanse...nothing. No major explosions like we were expecting. Not even really going to the bathroom much more than normal. Get the results back for the blood work, and he is a weak positive. On to the endoscopy. That gets moved back by 2 weeks because little man and I end up with strep. Just got the results from the endoscopy and the nurse told us it was negative. So now what? Oh she found evidence of gastritis and that's usually caused by reflux so here's another prescription for omeprazole. :/ No mention of what the scalloping was all about that she told me the day of the scope. I have to call tomorrow to make sure they didn't do something stupid and cancel my appointment on Friday with her....I will flip my sh*t if they did....they like to do that.

 

So, here are my questions...

1) What else could cause the blood work to be positive? I don't have a copy of the blood work so I don't even know what tests they ran. This bothers me. According to the nurse if your blood test is positive but the endoscopy isn't (yep, they took biopsies) you're just going to throw the blood work results out the window? Why?

2) This one is from my husband (and I'm humoring him here because what he's asking makes no sense to me) he wants me to ask if my changing our diet over to 100% whole grains and whole foods would cause something like this to happen. He wants me to ask because, apparently, he never really paid attention to what I fed the youngest child. Sure, I made the whole family switch over to whole foods just in the last year or so....but the youngest has been fed whole foods as a majority since he started eating food. I tried to stay away from processed stuff as much as possible. Noodles were the last thing I thought to change because I didn't realize they weren't actually made from decent stuff before then. But, I'd say 90% of his baby food was organic and with the exception of bread and tortillas a good portion was made at home from scratch (I was doing bread and tortillas too....but sporadically). I say I'm humoring my husband asking about this because he wants to back track to before we started with whole foods. My husband, who has finally been able to stop taking his cholesterol meds and who has been told if he continues eating this way will be off of his blood pressure meds by the end of the year. Did I mention he's 36 and been taking them for at least 10 years?

 

3) So now what? (I know I need to talk to the doctor, I do plan on it but you all have been so helpful and informative and you're more easily accessible right now!) Do I try a gluten free diet (which I kind of want to do anyway, to see if it would benefit my older son who has a host of neurological symptoms, maybe try it for a month and then add gluten back to the diet to see if it does anything? I also think it would benefit my husband as well.

 

Ahhh!!! I'm frustrated now because I was coming to terms and getting ideas for going gluten free but now it's like I'm back to square one trying to figure out what is going on. I'm not big on medication. Until we got strep I hadn't filled a prescription in well over 2 years (ask me how that went at CVS, if you don't mind cussing, I'll share it with you!) and I am most definitely thankful for that and I'd like to keep it that way. Everyone else in my family has regular prescriptions for various afflictions. I'm also not entirely comfortable just giving my 6 year old omeprazole for an indefinite period of time....especially not when it feels like they are just guessing. So....thoughts? Suggestions? Ideas on just what I should ask the GI doc?

Keep in mind, my doctor has a very strong accent (which, generally I have no problem with) and is always so rushed so she talks super fast and I find it difficult to keep up with what she is saying. She's nice and explains things when I ask....but it just makes it that much more difficult. Just seems like I have to play catch up with the conversation in the middle of the conversation. Oy.

[shadowicewolf]

1. What blood work was ran? I ended up with a positive on the blood test (iga ttg) and a negative on the biopsy (done four weeks gluten free). My symptoms, however, were severe (constant stomach issues, dropping 40lbs in a little over a month, etc) and resolved on the diet. I also had both genes.

 

It shouldn't. The top doctors in this field suggest that as long as you have 4 of the 5 on the following list you are celiac:

 

Blood test positive

genetic test positive

biopsy positive

symptoms of celiac

symptoms resolving on diet

 

2.No. Gluten is gluten is gluten, regardless if it is in its processed or whole form.

 

3. Wait until the testing is done, then try a good 4-6 month test period.

 

There are other things you can do to avoid the medication for acid reflux. I have GERD and can't handle anything spicy, greasy, and rich foods, as well as soda/tea and chocolate. So long as i stay out of those areas, I am pretty good. I also eat smaller meals more frequently and sleep on a wedge pillow.

[mommy2krj]

1. What blood work was ran? I ended up with a positive on the blood test (iga ttg) and a negative on the biopsy (done four weeks gluten free). My symptoms, however, were severe (constant stomach issues, dropping 40lbs in a little over a month, etc) and resolved on the diet. I also had both genes.

 

It shouldn't. The top doctors in this field suggest that as long as you have 4 of the 5 on the following list you are celiac:

 

Blood test positive

genetic test positive

biopsy positive

symptoms of celiac

symptoms resolving on diet

 

2.No. Gluten is gluten is gluten, regardless if it is in its processed or whole form.

 

3. Wait until the testing is done, then try a good 4-6 month test period.

 

There are other things you can do to avoid the medication for acid reflux. I have GERD and can't handle anything spicy, greasy, and rich foods, as well as soda/tea and chocolate. So long as i stay out of those areas, I am pretty good. I also eat smaller meals more frequently and sleep on a wedge pillow.

I plan on asking for a copy of the blood work. I know that for myself and my older two kids (and since we're all in the same system of docs) most likely my husband as well, they only ran 2 of the celiac panel. And off the top of my head I can't remember which ones...I know total immunoglubulin (pretty sure I spelled that wrong!) and one other one. I know it wasn't any of the ones (is there more than one?) that starts with a D. Why oh why can't they just run all of them....you already have the blood for crying out loud! Little man's blood work was done by the GI so I'm not sure if they ran the full panel or not. So far as I know...no genetic tests.

 

I tried explaining to my husband that gluten is gluten is gluten. I really don't even understand why he's questioning this...but then there are a lot of things I don't get with how his brain works sometimes. I'll chalk it up to his having to figure this out in his own way. I read and research and all that stuff because this type of stuff always fascinates me....he's more hands on and needs it all spelled out.

I am hoping the doctor tells us to try going gluten free for an extended period. I think it is the only way to convince him to even try it at this point. I plan on doing it as much as possible (if the doc doesn't tell us to) so if nothing else we all end up on a gluten "light" diet. Otherwise, I'm not sure what else to do. I think he just puts too much stock in the doctors being the end all, be all when really, we should be paying better attention to our bodies.

He always is looking at me like I'm crazy when I'm trying to remove foods from our diet. I pulled nitrites/nitrates out as much as possible a couple years ago along with as many food dyes as possible....it did help my oldest son. Also had my husband convinced about those once the youngest started eating regular food. Anytime he had anything with fake color to it, his behavior was insane. Anytime he has cheap chocolate...his behavior is insane. And for some reason he reacts that way with ice cream too. So we try to do all things in moderation. Drives us nuts because both my dad and his parents like to give the kids junk at every chance and we're the ones dealing with the fall out for days....drives me more nuts because my dad & stepmom were super strict with my little brother with sugar...to the point of pretty much banning....and now I watch my brother let his kid drink soda constantly and eat any kind of junk he wants because of that. Oy. Family. It always makes me proud when my little guy turns something down like soda (he's tried two sips and hated them both!) and then tells you why he turned it down. He is my ambitious child and he has major plans to play football for the Badgers and the Packers one day.

[powerofpositivethinking]

I'm sorry you're going through this    Some things I've found helpful:

 

-Get copies of all test results.  Post them on here and others can help.

-Writing down my questions before appointments, so I don't get tongue tied at them.

-I've found that going gluten-free significantly helped my GERD, but eating a whole foods diet has made it even better for me personally.  I realize that your kids already eat a whole foods diet, so maybe your son's key will be the gluten!

-Someone on here recommended the book Why Stomach Acid is Good for You by Jonathan Wright, and it is fantastic!!!  Those PPI meds can be taken if an ulcer is found, but long term for acid control,  it's a bad idea since it alters stomach function.  You're right to be suspicious of them offering omeprazole as the long term solution.  When the GI doctor offered me a prescription for a PPI, I politely declined and said I'd rather wait until the endoscopy.  I had a negative biopsy though I had a strong position DGP IgG score, and after the endoscopy it was confirmed I had GERD and a hiatus hernia.

 

Warning: Mini Rant  Why is it that the GI had no problem diagnosing me with acid reflux with only my word and wanted to hand me a prescription for reflux without testing verification, but a strong positive DGP IgG blood test score on 3 different occasions didn't seem to hold too much weight to him with a negative biopsy?  I think it comes down to money.  Unfortunately since money drives medical research for the most part in America, and there's no pill that can be given for celiac, doctor's don't want to diagnose unless you meet ALL the criteria because the drug companies won't benefit from you.  Sad but true.  My GI told me there is a lot of ongoing research with celiac right now.  Could be because talks of drugs and vaccines are surfacing, but maybe the doctors realize that Dr. Green is right and it is a hidden epidemic.  An endoscopy is a real money maker too.  Yes, I may still be a little bitter 

 

Here's a link to what Shadowicewolf is referring to regarding the 4/5 criteria:

Open Original Shared Link

 

check out the part in the paper right before the DH section.

 

hope this helps!