Celiacs & Crohn's Disease?

[sandejosgirl]

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

[rinne]

Hi and welcome.

What a day. My heart goes out to you, it must be so hard to have a child ill. The good news is that you have a diagnosis.

I'm sorry I can't be so helpful, I am not a Mom, nor do I know much about a Crohn's and Celiac connection.

You might want to check out this site:

Open Original Shared Link

[rinne]

A quote from the above web site from Elaine's daughter.

Mom writes that she recognized signs of illness in me from early on. Nose bleeds, night sweats, months of persistent diarrhea. The awful night terrors began when I was 3. I remember them vividly, then the toilet filled with blood

[nicspoon32]

Hello. I'm so sorry to hear about all that you're going through! I joined this site just so I could reply to you. I have Crohn's disease, and was diagnosed when I was 22 (although had symptoms for many years before). It hasn't been easy, but it's definitely manageable. I live a fairly normal life, and it doesn't stop me from doing anything I want to do. I am lactose intolerant and have been suspicious that I also have Celiac Disease, but have never been tested for it. I am happy to talk more about how I deal with my Crohn's disease with you if you're interested, just let me know. Maybe it will give you insight as you raise your little one.

I'm curious what kind of test the doctor did to confirm Crohn's... I know it's hard to diagnose, and usually requires invasive testing. There are certain things that can show up on blood tests to point to it, but not usually a confirmed diagnosis.

I wish you the best!

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

[sandejosgirl]

heyyah, nicspoon32 & others,

we have a conditional?, you might say, diagnosis of Crohn's disease for my daughter based on a blood test. it is similar to the whole celiac thing in that you can't get a gold star until they scope everything including your toes, but they have "new" blood tests, ours was from Prometheus Labs in CA that tested for:

ASCA IgA

ASCA IgG

Anti-OmpC IgA

Anti-CBir1

AutoAntibody

IFA Perinuclear Pattern

DNAse Sensitivity

Her platelets were off the chart

elevated white cell count

ttg in the low range, but present to indicate celiacs

still waiting on gene test for celiacs

Because my daughter just turned one year old (literally! on the 9th!) my Ped & Prometheus said the diagnosis was fairly clear as it just doesn't show up like this in a little person. of course we are going to go to a ped. GI to confirm her diagnosis.

My ??s: What is it like on a daily, monthly basis?

What are the effect in someone so young?

What are things that might be helpful to know going into it?

What ??s should I ask the specialist?

Thanks for any help.

[nicspoon32]

Hi Sandejosgirl,

First of all, thanks for your response to my post! I appreciate your insight, since it sounds like you've been going through a similar experience. Thanks, too, for explaining the Crohn's diagnosis. I used to stay up on the research when I was newer to the disease, but now that I'm coasting by I haven't been as vigilant. This knowledge will come in handy when talking to the doctor about my son, too.

I don't know that I can answer your questions about Crohn's in a pediatric patient, but I can tell you what the disease has meant for me. In the beginning I remember being very scared, and having to change my diet drastically (college girl - I lived on salads and popcorn!), which won't be a problem for your daughter since she'll start eating foods she's allowed to have. My friends think Crohn's is a GREAT disease because I don't have to eat anything healthy, yet I stay thin (haha - they don't know how much I've missed by spending my life in the bathroom!) The first couple of years were tough, and I spent a lot of time on the couch with fatigue and achy joints, but now I am able to exercise regularly and do all of the activities I want to do.

As you know, the key is to find a great doc that you trust. I found a fabulous doc, one of the top 5 in the country, at Cleveland Clinic, and he had me over the worst of the disease in about a year. It's really a balance of watching what you eat, keeping stress at a minimum, positive thinking, and awesome drugs. I'm currently on an immunosuppressant called Remicade, which I receive IVously every 2 months. I've been on the rainbow of drugs, and haven't had any long-term adverse affects. Even with the disease in semi-remission, I still needed a small-bowel resection 7 years after diagnosis due to a blockage, and am anticipating them every 10 years or so.

Something you may want to try (at some point - she may be too young?) are those pediatric nutrition drinks. I drank ensure, etc. before surgery when I couldn't eat any food, and they were easy for me to digest and gave me pretty good nutrition.

Also, there is a fabulous forum, similar to this one, for Crohn's. It was my help and inspiration for the first few years after I was diagnosed, helped me ask the right questions, and taught me what I needed to know to stay healthy. Open Original Shared Link Click on the link called "IBD Sucks Support Forum" about half way down. There are also support groups in most areas, although I've never attended. I have a few good friends (strangely enough) with the disease, and we support each other.

Your daughter (and rest of the family!) is lucky that you're so concerned for her health and involved in her medical care. I'm sure the road won't be easy, but it is possible to lead a pretty normal life with this disease. I wish you and your family the best!

heyyah, nicspoon32 & others,

My ??s: What is it like on a daily, monthly basis?

What are the effect in someone so young?

What are things that might be helpful to know going into it?

What ??s should I ask the specialist?

Thanks for any help.

[toni m]

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

[toni m]

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

my daughter also has celiac and crohn's. she was able to get her celiac under control in lessthan 6 months, she was continuing to have severe cramps and was losing weight rapidly. after a colonoscopy they discovered she had crohn's as well. she is on prednisone now and feeling good. we are new to this so i don't have a lot of advice on crohn's, but wish u the best of luck.

[GFinDC]

Hi Sandjosgirl,

I am sorry to hear that your daughter has both Crohn's and Celiac. I have celiac and my younger brother had Crohn's and celiac. My older sister seems to have celiac also.

I think a food journal would be a help in identifying things she reacts too. The journal might be easier to understand if the items she eats have a fewer number of ingredients vs a large number of ingredients. The tricky things is that reactions can happen quickly for some people or 18 hours or more later for others after eating gluten containing foods. So to know if she is reacting to a certain food you would almost need to limit her to that one item for a couple days, which might not be wise. Or limit her to the same meals for several days and rotate out ingredients from her meal plan. Hopefully your doc will have some ideas on how to do her diet. Probably a nutritionist would be helpful in this situation to create a meal plan. It may be a problem to find a good nutritionist that knows about celiac and Crohn's though. If there is a celiac specialist in your area perhaps you could ask them for a referral. Or maybe get a referral from one of the major celiac centers.

You might want to do a search on "Crohn's yeast" also. It seems some percentage of Crohn's patients have yeast antibodies in their blood. Perhaps your doctor could give some advice on if it makes senss to try a yeast free diet as well as the gluten free diet for her.

There is a digestive enzyme called DPP IV that might help for the times when she gets accidentally glutened also. It is supposed to break down the gluten protein. It seems to help me when I get glutened.

[nicspoon32]

Hello,

I was chatting with you a few weeks ago about my son possibly having Celiac, and your daughter's possible Celiac/Crohn's. I'm just wondering if you've been to see the Ped GI? Have you learned anything?

We may be in the same boat. My 6 month old son's latest tests showed a high sed rate (inflammation) and fat malabsorption (along with failure to thrive). His pediatrician called the Cleve Clinic and got him in to see a pediatric gastro on Friday morning because she's now suspecting Crohn's.

Let me know how things are going for you!

Nicole

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

[sandejosgirl]

Well, we are waiting, waiting......waiting of our Peds GI apts. Joy (the baby) gets in next Wed for our initial 40 min apt.

In the mean time? I freaked out and asked our Pediatrician to run Crohn's labs on my oldest two (4.5 & 3) cause frankly they have way more symptoms of "something" than my baby.

Did you guess it????

Yep, they came back Pos+++ too!! Welcome to my nightmare. This disease is horrible enough for adults, but for kiddos? They stuff I've read...we are waiting for them to schedule my two other kiddos.

I'm hoping that we go in and they laugh and tell me that it is impossible for all 3 of my kiddos to have celiacs and Crohn's.

For now I'm trying to pray and have peace, cause my heartburn, sleeplessness and anxiety isn't going to change to change their diagnosis one bit!

Stephanie

p.s. I've had some folks at home say, "well, at least you know"; uhm totally unhelpful!!! You don't say this to someone (or their mother) who has just been diagnosed with cancer!! or some other horrible chronic, sometimes debilitating illness.

okay, sorry! had to vent. makes me so mad!! and I wasn't in a place to say something kind to let them know, just kept quiet.

[I hate gluten]

i understand the anger part, ihave been struggleing with it for awhile now. ithink when i get angry if there is someone who I have the least bit dislike for ( especially in my family) I take it horrible. I am not saying I am wrong but my anger is strong but getting better. Good luck and stay strong.

quote name='sandejosgirl' date='Feb 5 2009, 10:03 AM' post='508398']

Well, we are waiting, waiting......waiting of our Peds GI apts. Joy (the baby) gets in next Wed for our initial 40 min apt.

In the mean time? I freaked out and asked our Pediatrician to run Crohn's labs on my oldest two (4.5 & 3) cause frankly they have way more symptoms of "something" than my baby.

Did you guess it????

Yep, they came back Pos+++ too!! Welcome to my nightmare. This disease is horrible enough for adults, but for kiddos? They stuff I've read...we are waiting for them to schedule my two other kiddos.

I'm hoping that we go in and they laugh and tell me that it is impossible for all 3 of my kiddos to have celiacs and Crohn's.

For now I'm trying to pray and have peace, cause my heartburn, sleeplessness and anxiety isn't going to change to change their diagnosis one bit!

Stephanie

p.s. I've had some folks at home say, "well, at least you know"; uhm totally unhelpful!!! You don't say this to someone (or their mother) who has just been diagnosed with cancer!! or some other horrible chronic, sometimes debilitating illness.

okay, sorry! had to vent. makes me so mad!! and I wasn't in a place to say something kind to let them know, just kept quiet.

[SPanara]

I seem to be having a few side effects.

I have scanned through your thread , and recognize so much of what you talk about I've been diagnosed for 11 years now but definitely had it since I was around 12 - I'm 40 now.

I wanted to mention = with you shots, have you Considered switching to the perloaded pens ? The shots don't take as long and are much less hassle. They still STING like a but that is the nature of the beast I guess.

Anyways just wanted to say "Hi" let you know that you're not alone with this sucky disease and tell you about the Humira pens, if you weren't aware of them already.

Open Original Shared Link

[nicspoon32]

Oh Stephanie! I can't even imagine what you're going through. Yes, I do think they they are going to laugh and say it's impossible. I mean, seriously - the odds are SO CRAZY SLIM for once child that age to have it - but all three? no way! Maybe there's something else going on - some sort of infection that is mimicking the symptoms - since all three are experiencing the symptoms and have positive tests. I have no idea, but no mother should have to endure that so I'm keeping you in my prayers.

We had our appt. on Friday, and our pediatric GI said it's so slim that a 6 month old would have Crohn's, even though his tests are pointing to it (white blood cell, inflammation, and fecal fat). We didn't have the targeted testing your children had, but I'm going to ask for it when we go back in 3 weeks. He scheduled a 72 hour stool sample to see just the extent of fecal fat, and repeated the abnormal blood work, plus is drawing for Celiac, allergies, etc. We were lucky to get into the cleveland clinic so fast - he's friends with our pediatrician.

My email is nicspoon@yahoo.com if you want to keep in touch that way. I don't check this site often, but I'd like to hear how things are going for you.

Take care!

Nicole

Well, we are waiting, waiting......waiting of our Peds GI apts. Joy (the baby) gets in next Wed for our initial 40 min apt.

In the mean time? I freaked out and asked our Pediatrician to run Crohn's labs on my oldest two (4.5 & 3) cause frankly they have way more symptoms of "something" than my baby.

Did you guess it????

Yep, they came back Pos+++ too!! Welcome to my nightmare. This disease is horrible enough for adults, but for kiddos? They stuff I've read...we are waiting for them to schedule my two other kiddos.

I'm hoping that we go in and they laugh and tell me that it is impossible for all 3 of my kiddos to have celiacs and Crohn's.

For now I'm trying to pray and have peace, cause my heartburn, sleeplessness and anxiety isn't going to change to change their diagnosis one bit!

Stephanie

p.s. I've had some folks at home say, "well, at least you know"; uhm totally unhelpful!!! You don't say this to someone (or their mother) who has just been diagnosed with cancer!! or some other horrible chronic, sometimes debilitating illness.

okay, sorry! had to vent. makes me so mad!! and I wasn't in a place to say something kind to let them know, just kept quiet.

[sandejosgirl]

Crohn's FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The Ped GI thinks we had a false pos cause only 2 out of 7 markers were present w/o weight loss or diarrhea.

AND these past 4 weeks we (Joy and I as we are still breastfeeding) have been gluten-free =

1 shoe size

1 inch in height

1 new tooth coming through

Ped GI says our new growth w/past severe food issues confirms our Celiacs.

I'm so grateful!!

One kiddo ruled out of Crohn's, two more to go. Faith & Caleb's apt.s are at the end of the month.

Faith had blood in her stool today, so, we are not out of the running yet. But I have hope.

Stephanie wheat, rye free 11/07; gluten-free 1/09

mother of Faith (4.5), Caleb (3), Joy (1): 3 gluten-free kiddos

[gf4lyfe]

Hello everyone! I am a new poster as we have just started down the celiacs diagnosis/gluten-free road & now we have a direction that I was not even considering. In our fam. Dad is symptomatic, Mom (me) not as far as we know, oldest daughter (4.5) symptomatic & has DQ2, son-? (3), baby (1yr) stopped growing at 7 months & ttg+. We ordered some bloodtests for the baby to check her iron and vitamin absorbtion and a celiac panel. I didn't realize the Ped. also sent out for Crohn's until it came back positive. We are still waiting for her gene test.

Does anyone else have both? Yesterday I felt like I got hit by a truck from out of nowhere and I don't feel like there's very much info out there about Crohn's in kiddos, especially babies. It'll take us 2-4 weeks to get into a peds GI in Portland to talk about this.

Any help, advise, or encouragement would be VERY welcome!

Thanx.

Mom in the celiac (& now Crohn's) maze

Well I am very sorry to hear that, I was told I had celiac on x-mas eve of '07. Last year I was really sick, alot! we couldn't figure out what it was from. I had test after test and then my gastro thought that maybe I had Chron's. I was scared....But Thank God I don't have it. I think the two are/ can be connected, or maybe it's something that has been in your family and you never knew. In the past two years three peole in my family ( including myself) have been told about our gluten intolerance/ celiac.

I hope you are able to work through this....good Luck and God bless

~Laura

[My3B's]

Hi Stephanie. I am so glad that the first kiddo is Chrohn's negative. I am hoping you have good news with the other two also. I am a mom of 3 who is just now starting down this same path and it is very scary, at times frustrating and so much anxiety over the unknown.

I am sorry you got upset with the "at least you know" comment. I do not think it was meant to be insensitive. One thing I have realized is many of the people on this site have suffered for YEARS with symptoms, only to be told by doctor after doctor that they are essentially crazy. I believe I am one of them......you're a working mom......your just depressed.......here's a pill....etc.

I think the comment was just meant to let you know how fortunate you are to have a fairly quick diagnosis....to have a pedi and a pedi gi who seem to know what they are doing......many on this site have experienced quite the opposite......watching their children go downhill and have no answers because they did not fit a doctort's idea of a "typical" celiac child. To live with the pain of knowing they could have spared their child possibly years of illness and complications down the road if they had only arrived at a diagnosis sooner.

Of course saying something like this to a cancer patient would seem horrible and to someone dealing with the possibility of a debilitating chronic illness it also seems terrible but I think in this case it was just meant to say "now you can move forward and heal"

Anyway I hope the tests for your other two also turn out well. Celiac is hard enough without adding Chron's to the mix. My fingers are crossed for you.

[Gfresh404]

Sorry if this was already posted since I did not read all the posts:

https://www.celiac.com/articles/915/1/Celia...ease/Page1.html