New To All Of This....and Have Some Questions.

[mommy2krj]

First off...a little about us.

 

There's me and DH and we have 3 kids....18, 15 and 6. Only my 6 year old is currently in the process of being tested. He's had the initial blood work that said he is positive for Celiac's and we go in on the 19th of June for his endoscopy/biopsy. We are, obviously, worried and a little aggravated as we have to go 3 hours away in order to do all of this. We'll say I'm a touch frustrated with his pediatrician, who we've had for the past 12+ years.

 

The GI docs have, so far, been pretty decent. I'm also going to call them tomorrow with most of these (if not all of these) questions....just thought I'd try to get a little insight first.

 

My 6 year presented with just GI issues. He's been complaining that his stomach hurt since end of December/beginning of January. We were given Miralax and told he was just full of poop (and he was) which lead to him having diarrhea 12+ times a day for over a week. He lost a pound in that time and I wasn't comfortable with just doing that. He's my smallest child and he really doesn't need to lose any weight!!! So I took him back and was given omeprazole and told he just has heartburn and he's anxious about starting kindergarten. In the middle of the year?!?! I don't think so. Gave that a week. They did refer me to the GI when I took him in the first time...but they booked out so far! He was puking randomly, with no other symptoms as well. And complaining that his head hurt and he will occasionally tell me random other joints hurt as well.

Finally got in to the GI and got the blood tests done. The pediatrician's office REFUSED to do any kind of testing on him due to the GI appointment. Not even to see if the Miralax had helped clear him out any! That made me angry.

 

I've seen the fact that a lot of doctor's don't run the full Celiac panel (and I have to admit I'm not entirely sure what the full panel is) and all I know for sure is that whatever tests they ran....they told me less than 30 was normal and he was at 33 and positive for Celiac's. And to not change his diet until after the biopsy. Oh and he has a vitamin D deficiency as well.

 

Now...I have a few questions.

1. Is he definitely positive for Celiac's given the positive blood test? I can't seem to find any real definitive answers on that.

2. Should all of us be tested? Depending on the results (or maybe regardless of the results) of the biopsy...we're planning on doing gluten free for him. Most likely will do it as the entire house as it seems like way more work trying to cook separate things for him and not have any cross contamination. My oldest son has adhd/ODD and I had looked into wheat issues when he was little and pretty much got the "you're crazy" look/attitude from the doctor. He also has sleep apnea and the little guy was pretty close to that as well. They've both had their tonsils/adenoids out and while the little guy is doing better the older one still has sleep issues....just not at the same severity. Behavioral issues are huge with my 15 year old and always have been. I see a lot of failure to thrive as being a big issue...he has not EVER had that problem. He is 15 and almost 6ft tall and 191lbs.

 

3. Not sure how to figure out all of this with my 18 year old. She is from a previous relationship...so I don't know if I should wait until we're all done testing the rest of us or if she should just be tested right along with us? She's been having headache issues and fatigue but she's a senior in high school at the end of the year....it *could* just be stress related. She's never really had any other issues. She gets migraines too...but those run in my family. Her father's side of the family is pretty much all gone. She has one uncle that she never sees...so I don't really know much about their health issues.

4. Well....really there are a million questions at this point and I'm trying to not read too much into anything so this one is for all those other questions that I know I'll have in the future.

 

I'm really just trying to wrap my head around all of this. There's so much information to take in. I also have a feeling that if my other son does test positive for this....I'm going to be rather angry for a while since I questioned it so many years ago and got treated like I was dumb. :/

 

I'm not coming into this completely blind. I knew what Celiac's was (well, mostly, I didn't know it was an autoimmune response) which is more than I can say for every single other person I've spoken to about this with the exception of my sister in law and my mom. *sigh*

 

Any insight would be most appreciated. I haven't figured out if I'm scared or angry or what. I am definitely overwhelmed and stressed. Thanks!

[StephanieL]

It is so frustrating. The AVERAGE time it take to be diagnosed 6 years.  It sucks.

 

I would get everyone tested at the same time.  If you have to switch over for one or more than one then knowing would be great.

 

Hope things get figured out ASAP. Also, you are keeping the child on gluten, right? That is the most important thing till everyone gets tested, they need to be consuming gluten.

[mommy2krj]

It is so frustrating. The AVERAGE time it take to be diagnosed 6 years.  It sucks.

 

I would get everyone tested at the same time.  If you have to switch over for one or more than one then knowing would be great.

 

Hope things get figured out ASAP. Also, you are keeping the child on gluten, right? That is the most important thing till everyone gets tested, they need to be consuming gluten.

 

 

Yes. We are keeping him on gluten. I don't think I've ever felt so bad about what I was giving my child.

[mommy2krj]

Well...talked to the nurse today. She told me that yes, he did have pretty high numbers in the blood test that they did but it isn't conclusive until they do the biopsy...blah..blah...and that yes the doctor will probably have us go gluten free after the biopsy based on his blood tests to see if that helps with his stomach.

I now have a call in to both my husband's doctor and our regular pediatrician for the blood work for the rest of us. I am expecting phone calls from each. It was easier with my husband's doctor, I'm assuming since it is hereditary (or can be) that this is why that one was easier. The nurse gave me a little bit of attitude when I called the ped's office...but I expected that. Explained to her that we were going gluten free as a household once my son's biopsy was done so I wanted the tests run on my other two children before that happened. She said she'd speak to the doctor and get back to me this afternoon or tomorrow morning.

 

The rest of my questions, I guess, won't be answered until my son's biopsy. When I can speak with the GI doc. I know June 19th isn't really that far off...but it feels like it.

 

Made me kind of sad after soccer last night. He got the treats from the soccer parent and I got him an ice cream....ALL of which after his biopsy, he won't be able to have. Sure do wish the soccer parents would only bring HEALTHY snacks! Not sure why they even get snacks after soccer anyway...but it's been around since my older two were in it. We were always the mean parents that brought orange slices or some other fruit. Now we're going to have to really be "those" parents. *sigh* Oh well. I don't like seeing my child so sick....and he isn't nearly as bad as some of the ones I've read about on here!

 

So much going on right now! Ahhhh!!! I need to plan my daughter's graduation party too and I don't even want to think about the food yet! So busy!

[cyclinglady]

Well...talked to the nurse today. She told me that yes, he did have pretty high numbers in the blood test that they did but it isn't conclusive until they do the biopsy...blah..blah...and that yes the doctor will probably have us go gluten free after the biopsy based on his blood tests to see if that helps with his stomach.

I now have a call in to both my husband's doctor and our regular pediatrician for the blood work for the rest of us. I am expecting phone calls from each. It was easier with my husband's doctor, I'm assuming since it is hereditary (or can be) that this is why that one was easier. The nurse gave me a little bit of attitude when I called the ped's office...but I expected that. Explained to her that we were going gluten free as a household once my son's biopsy was done so I wanted the tests run on my other two children before that happened. She said she'd speak to the doctor and get back to me this afternoon or tomorrow morning.

 

The rest of my questions, I guess, won't be answered until my son's biopsy. When I can speak with the GI doc. I know June 19th isn't really that far off...but it feels like it.

 

Made me kind of sad after soccer last night. He got the treats from the soccer parent and I got him an ice cream....ALL of which after his biopsy, he won't be able to have. Sure do wish the soccer parents would only bring HEALTHY snacks! Not sure why they even get snacks after soccer anyway...but it's been around since my older two were in it. We were always the mean parents that brought orange slices or some other fruit. Now we're going to have to really be "those" parents. *sigh* Oh well. I don't like seeing my child so sick....and he isn't nearly as bad as some of the ones I've read about on here!

 

So much going on right now! Ahhhh!!! I need to plan my daughter's graduation party too and I don't even want to think about the food yet! So busy!

Besides fruit, I bring big bowls of homemade popcorn, with a spoon to scoop and paper cups to hold.  The kids love the popcorn and I never received any complaints, just requests for more!  

 

I'm planning the food for my daughter's sixth grade graduation.  The party won't be large, so we're having tri-tip and all the sides will be gluten free.  No one will even notice the difference. 

[mommy2krj]

Yeah, the treats for soccer have always bothered me. Now, on tournament days, they made sense. For an hour long game? Not so much. Some popsicles when it's 90 degrees out make sense too...though, those are still super sugary and full of things you don't really need. But seriously...the snack last night was Cheez Its and twizzlers. And he was encouraged to take more candy. :/

Now we just need to make it through until June 19th. I haven't heard back from any of the doctor's offices yet. Hoping I can get these blood tests knocked out before the biopsy. It would just make everything so much easier.

After speaking with my 18 year old daughter this morning when she appeared (I had no idea she was still home!) downstairs....she is going to prove to be the difficult one with this. I think my 15 year old son is sufficiently freaked out for his little brother that he will do his best to not be difficult (and honestly he probably has it too given past issues) and for him that takes a lot.

 

My 18 year old, though. She works at McD's and has made that her diet since she started working there. Drives me nuts. She kinda freaked on me a little when I told her she was going to be tested too. May have them do a test for all her vitamin levels given her diet...so if she doesn't have it....at least we'll know where she stands vitamin wise. She isn't listening to any of us about her diet causing her headaches....ahhhhhh teenagers!!!!!

[ZBMom]

I feel your pain.  I have been battling for an official diagnosis for 3 months now and changed pediatricians along the way.  Currently we are waiting for the GI appointment in August.  It makes me what to spring the $400 per person for mail order genetic testing and say the heck with the doctors.

 

My whole family went gluten free to support my oldest son as part of an "experiment" to help his enuresis.  (It helped dramatically and everything else fell into place.)  I never even considered at the start of this journey that gluten could be causing all of our health problems. 

 

It turns out that my youngest son is even more sensitive and had more dramatic improvement in health than my oldest.  Originally I had told my youngest that it was just in our home and we would take him out to eat on occasion etc.  Then whenever we took him out he was extremely ill afterword. 

 

Currently we are all gluten and dairy free.  This week my youngest had a severe reaction to soy and my oldest had a mild reaction to it so now we are soy free as well.

[StephanieL]

ZB, The genetic test isn't going to confirm a diagnosis. As with all things genetic, it only tells you if you have the predisposition to developing it. 

 

 

If you do want an official diagnosis, I am sorry to say but your kids need to be consuming a regular amount of gluten for any of the diagnostic tests to be accurate.   So parents want this and some do not care for the official word but if you want/need special accommodations for school, you will most likely need an official diagnosis.

[mommy2krj]

Finally got a call from the ped's office this afternoon. Of course it was while I was gone so I'll have to call them back on Monday but at least they finally called.

 

ZB...how scary. I'm trying very, very hard to stay away from the part of this site that talks about all the other things that can also happen with Celiac's. At least until I've actually spoken with the GI doctor.

I stood in the "Organic/Gluten Free" aisle at my local Festival Foods (they have the biggest selection of all the stores I've found around here) and just tried to let it all sink in. We were trying to do organic/whole foods and get away from the processed stuff as much as possible....but this is going to put us over the top on our food bill. *sigh* Even without buying much, if any, of the more processed gluten-free foods out there.

I just....I think I'm having a bit of a breakdown or something. Granted there are other things going on as well (which, when isn't there) but it's all right at the top of my threshold for things I can take. Aaaaaahhhhhh!!!!!

[ImaMiriam]

Does anyone know if you can take a tax deduction for buying gluten-free foods? Somewhere, I read that one can do this, because the gluten-free food is medically required! My husband is going to check with our accountant, and I'm curious if anyone here has done or is doing this each year. If you are, what receipts do you keep/need?

 

We recently (mid-April) had the Celiac diagnosis for my 11 year old daughter. It's a huge change for us and learning the way is complicated. For the "first time" (that we know of) she accidentally ate some gluten this past Friday at her school -- she had a glass of grape juice, drank it all to find bread crumbs in the bottom of the cup. As she saw the bread crumbs (from challah bread that was being blessed and eaten) she realized she'd seen the bread passed around, OVER the cups of grape juice....some crumbs must have fallen in! She's been really uncomfortable; I can't wait to see her this morning to find out if she feels any better today.

 

Her reaction to the gluten is one confirmation of her Celiac disease. I'm holding out against the biopsy! Call me what you will, she had a positive blood test, has improved on the gluten-free diet, and has one of the two genes. I also have that same gene. 

[ImaMiriam]

I just....I think I'm having a bit of a breakdown or something. Granted there are other things going on as well (which, when isn't there) but it's all right at the top of my threshold for things I can take. Aaaaaahhhhhh!!!!!

 

Hi again, I totally relate to what you said about having a "breakdown." I'm finding this whole gluten-free/Celiac adjustment a major emotional roller coaster. There are a few things that help me, so far:

 

1) I found a great coach to talk with; she's had Celiac for 8-10 years and gives great advice. Not inexpensive....I hired her for 3 months.

 

2) Probiotics for my daughter (and me).

 

3) Take it one day at a time. Rest a lot. Visit this forum (I finally joined today!) Take naps.

 

4) Fish oil and/or flax oil supplements.

 

5) essential oils are calming. I've bought some from doTerra and there's two that I regularly use for my daughter and me: Serenity and DigestZen. I also LOVE lavender and have always used it, so find myself reaching for all three of these A LOT.

 

6) Take it one day at a time, sometimes one minute/hour.

 

7) Speak out and speak up. I sent ANOTHER email to my daughter's school yesterday, because one of her teachers has been giving her unsolicited advice about Celiac, telling her she's just being "overly sensitive" and to "get over it." UGH!!!

 

8) bake your own bread and cook using raw ingredients, lots of fresh foods. We eat berries with breakfast almost every morning, I buy frozen organic raspberries, blueberries, and mixed berries. I take some out of the freezer about an hour before breakfast.... I love Anna's Bread mixes, they are superior gluten-free products and delicious.

 

There's probably more....that's all for now. Hang in there, I believe it'll get easier eventually -- at least that's what I'm hearing and reading.

[1desperateladysaved]

For the tax deduction, you can deduct the additional cost of gluten free foods.  For example if you pay 1.00 rather than .79, you can deduct the difference in price.  I am hoping one day they will have a standard deduction for celiac disease, because I don't know practically how to make it work this way. I heard someone is working on getting it.

[greenbeanie]

Hang in there! It sounds like you're on the right track, and you'll get through this. Only a few more days until the 19th.

In response to your original comment about an unsupportive pediatrician, I'd really urge you to switch doctors as soon as all the testing is over. My daughter and I both had the same family physician as our PCP for years, and she gave us tons of bad advice and continually dismissed our concerns. I realized two years ago that we needed to switch, but it was always a bad time because switching would invalidate referrals we needed. But I finally became so fed up that we switched anyhow, then we had the unanticipated problem of having ALL the local pediatricians either full or scheduling initial visits 4-6 months out. I made dozens of calls, but it still took months to find a new doctor who would listen. However, once we did, the new doctor immediately agreed to run the celiac tests - and my daughter's were positive. We were finally on the road to a solution, after years of frustration.

It's simply not worth it to stick with a bad doctor. I know it's a huge hassle, and that it's extremely frustrating and time-consuming to switch a whole family, but it's worth it. Good luck!

[frieze]

I have said this before, some of these MDs need reporting to the AMA. 

[susan7fink]

I can so relate to your story..I have 5 kids 2 are grown and 3 at home..1leaving for college. My 9 year-old son has psoriatic arthritis and that's really how we found out he had celiac confirmed by biopsy results Monday. Now its gluten free For us all. But all the things you mentioned....between my son my 13 who has had severe constipation add bipolar ect ect which have landed us in the hospital.myself brain fog belly bloat and on and on. This is very difficult. Drs make you nuts, I think I should have frequent flyer miles .expensive tests I've been stressed overwhelmed and agitated. I wish you luck.we are all in this together. I as well felt horrible giving my don gluten bf biopsy..I felt was putting poison in him, now I'm scared I'll let gluten in without knowing!!

[mommy2krj]

I can so relate to your story..I have 5 kids 2 are grown and 3 at home..1leaving for college. My 9 year-old son has psoriatic arthritis and that's really how we found out he had celiac confirmed by biopsy results Monday. Now its gluten free For us all. But all the things you mentioned....between my son my 13 who has had severe constipation add bipolar ect ect which have landed us in the hospital.myself brain fog belly bloat and on and on. This is very difficult. Drs make you nuts, I think I should have frequent flyer miles .expensive tests I've been stressed overwhelmed and agitated. I wish you luck.we are all in this together. I as well felt horrible giving my don gluten bf biopsy..I felt was putting poison in him, now I'm scared I'll let gluten in without knowing!!

Sounds like you have a plateful too! We had to change his appointment because we ended up with strep but thankfully they were able to get us in rather quickly....only another two week wait instead of another month or two! So now we go in on July 3rd. Nothing like having to battle strep throat in the summer! I haven't been that sick in a long time! Ugh.

As much as I know it's going to be a bit of a struggle at first...I'm almost looking forward to changing the diet. Just knowing it will make him feel better helps. I'm hoping it helps quickly and we don't go through too much withdrawl!

Thanks for the reply. It definitely helps to know there are others out there in a similar situation. I'm having my aunt talk to her doctor because she's had a lot of health problems lately but nothing is coming back as to why. So....I'm guessing it definitely is coming from my side of the family and knowing all the health issues on my husband's side...it's definitely coming from his side as well! Fun stuff. My sister in law is having everyone in her family checked as well as her dad was also recently diagnosed with Celiac's. I told her to make sure she is getting herself checked as well...not just her boys...as she has had some issues with getting pregnant and miscarrying. She's pregnant right now and I'm hoping she can carry this one to term.