Need celiac success stories please!!

[beckington]

I was diagnosed with celiac on Tuesday. Ds2, who is exclusively breastfed and is about 4.5 months old, has not been gaining weight well - he weighs about 10.5 lbs (was 7lb 2 at birth). We've been trying to increase his weight gain, but no luck. Now with this celiac diagnosis we are suspicious of him reacting to the gluten and that's what's causing his slow growth. He also has mucousy poops and a red ring around this anus. I've tried taking out other foods from my diet but it made no difference.

At the moment I'm feeling discouraged at the moment - or overwhelmed I guess with all the changes I need to make, and forever. I'd really love to hear some reassuring stories from parents who have been through something similar - babies or toddlers that were diagnosed with celiac or gluten intolerance and started thriving! How long did it take to notice a difference? Or if you have celiac, how long did it take you to notice a difference in yourself?

Yeah, I want the good, uplifting stories please. Humour me, OK?

Thanks! :)

[scsigrl]

Breath!  Really, take a few minutes and breath!!!!

You WILL get the hang of it and you will feel better!!

My DS was just over 3 when he had his scope.  We went GF on July 4th last year.  Till that point, he had leg cramp issues and BM issues.  Within a few days/weeks *most* of that resolved.  We had to add a strong probiotic before his BM's were "normal" but they did get there!

Because DS's issues weren't *that* bad we chose to switch him over to GF gradually.  Over about a two week period he was totally GF. I wanted to give myself a little time to adjust and start with the basics of what he was use to (ie finding subs for things like crackers and pretzels.  Chicken nuggets.  Pancakes.)  My goal was one thing a week but once I started I found what I needed and it went much faster.  Like I said, after 2 weeks he was GF and things got much better.

He is still really thin.  Was in the 90% as a baby and toddler but dropped off.  He's not much more than skin on bones but he's healthy.  Eats, plays, thrives at school.  

You CAN do this!  Fo you and your baby!!!

[camprunner]

Our story sounds similar to yours minus the actual dx.  My daughter was 4 months old (and exclusively breastfed) the first time the doctor expressed a concern about her lack of weight gain. She was 7 lbs 10 oz when born and about 10 lbs at 4 months. She was 12 lbs at 6 months when the doc got really upset with us.  At this point, she was also have some issues with reflux (coughing) all night.

We ended up supplementing with soy formula (because I was having to supplement by that time anyway due to WOTH).  At the same time we hit some solid foods hard and she started to grow.

At the time though, we had no idea that I had anyway issues and when she turned a year old we introduced milk back into her diet because she had no obvious problems.

When she had just turned seven, I went on the Maker's Diet which elimiated gluten from a large portion of my diet. I'd been very ill in for quite a while and no doctors would listen.  The only time the kids ate gluten was on the occasion that they were given it at a birthday party or at a restaurant.  We soon started to notice that DD got a bump or two on her face after eating gluten.  It took several months to convince my husband but eventually she was put on a gluten free diet.  She was still at bedwetter at this point.  I took milk out of her diet next.  When BOTH milk and gluten are out of her diet, she does not wet the bed, have bumps, etc. She also had quite a bit of anxiety which has disappeard since avoiding milk and gluten.  I strongly suspect Celiac Disease with her as it has made such a difference.

By the way, she went from being such a slow growing baby to being in the 80th percentile for height! Catching your baby's problem now will be really good for him!

[beckington]

Thanks ladies for the support and stories! I'm just driving myself nuts with this at the moment. I want answers NOW. Is his slow weight gain because of the celiac, and will it be fixed now? Only time will tell, but I am finding it hard to be patient - if it's not this, it's something else, but what? And how do we get some fat on him? After a couple of months of trying to get his weight up I was content to declare that his growth was normal for him - and so was our doctor. Slow but steady, consistent growth - that's not a bad thing. But his last weight check showed a big drop in gain, which has got me worried again! Bah!

I feel pretty confident that I am not eating gluten now - have been checking everything for hidden gluten and limiting cross contamination possibilities, but cc is still possible. The only big thing left to check is whether or not the domperidone I'm taking contains gluten - I called the pharmacist and he couldn't see any gluten listed, but I think I'll call the manufacturer tomorrow to confirm. Hopefully there isn't gluten in it because it would take a long time to wean off and I wouldn't want to do it too quickly and hurt my milk supply!

Aaaaarrgh. Patience, patience. Not something I'm known for, that's for sure!

[camprunner]

When I look back, I wonder if dd's lack of weight gain wasn't due to MY not getting her enough nutrients because I wasn't absorbing them correctly due to MY gluten intolerance. She obviously has the same issues but my issues may have been the biggest problem at that age.  It is going to take a while for your gut to heal and absorb the nutrients. I'm not sure what to tell you.  In a month and a half solid foods will help. You don't say how long he was at birth but 7 lb 6 ozer was about that at 4 1/2 months old and that was considered normal by our family doctor because she was small at birth (18 inches long and a real fatty).  Is your DS skinny or is he a pretty round little guy?

[beckington]

I wonder about a lack of nutrients on my part too and am going to ask for testing, but my iron was just tested and that was fine, so it's possible I might be OK in other things - or not! :)

DS2 was 7lbs 2 at birth, two weeks overdue. He gained a lot in the first few weeks, then almost nothing for 5 weeks, then a steady 3-4 ounces a week for the next two months and then only 4 ounces over the last 3 weeks. He's 10lbs9 at last weigh-in last week. He's a skinny baby - not an ounce of fat on him. It's just the last few weeks though that I'd say he's starting to look unhealthy - before that I'd say he looked fine, but now I look at him and wonder. He's gaining in length but not putting any fat on.

During the steady 3-4 ounce period I was feeding him like crazy and we were happy with that weight gain, but the last few weeks I haven't been able to as much (though he is still nursing A LOT) because my husband went back to work and I'm busier with my other son and life. So, it could be just that, but also I can't do much about increasing our feedings (except at night, which I can do) a lot though I'm trying what I can. Maybe it will get better when we introduce solids. I've read that babies at risk of celiac should be introduced to gluten between 4-7 months of age, and though I naturally lean towards baby-led weaning in this situation we might not go that route. Of course, I've also read you should wait to introduce gluten! So who knows. Bah!

[scsigrl]

Originally Posted by beckington 
The only big thing left to check is whether or not the domperidone I'm taking contains gluten - I called the pharmacist and he couldn't see any gluten listed, but I think I'll call the manufacturer tomorrow to confirm. Hopefully there isn't gluten in it because it would take a long time to wean off and I wouldn't want to do it too quickly and hurt my milk supply!

http://www.glutenfreedrugs.com/

You can call or email Steve and he is great at getting back to you if you don't find what you need on the site.  

[beckington]

Thanks scsigirl - have checked there but not listed - didn't know I could email him though, thanks!

[ccohenou]

I felt overwhelmed when DD was first diagnosed about a year and a half ago. She was 2.5 at the time. But, honestly, it was better news than what I had feared when we first noticed her abdominal distension.  In the year since she has adapted really well, really well indeed. She asks whether foods are gluten-free, and she understands that gluten makes her sick and makes her tummy hurt. She has also started gaining weight normally, growing in height, lost the eczema on her face and scalp, no more terrible painful constipation and no more pregnant-looking belly. It took a few months and some iron/zinc supplements for DD to start looking and feeling better, I would say. The damaged intestinal villi have to have some time to regrow before you start noticing recovery. Taking lactase supplements or avoiding dairy for the first few months was recommended by our GI doctor to improve the abdominal symptoms faster. 

And, completely honestly, right now the gluten-free diet feels like a minor inconvenience at the worst, and it usually doesn't even feel like that. Simple substitutions (corn tortillas for wheat, ice cream for cake, rice pasta for wheat pasta) make it really manageable and the selections of gluten-free products in stores and restaurants has expanded by leaps and bounds.  We've worked out the substitutes and restaurants that work for us, and now it doesn't require much thought at all. Reading labels is simpler than it used to be, too, because any ingredient or additive that is made from wheat must be labeled as such.  DD's daycare has been very helpful and willing to work with us wrt cooking her foods carefully. 

[scsigrl]

Originally Posted by ccohenou  Reading labels is simpler than it used to be, too, because any ingredient or additive that is made from wheat must be labeled as such.  

Just a work of caution (and I am sure you already know this but JIC!)  You have to watch for MUCH more than just wheat!  You need to look for rye, barley and oats too.  A big one in reading labels is malt esp. in cereals!  Also, the government was SUPPOSE to start labeling like FALCPA about 3 years ago!   Send letters to your reps to force them to get this DONE!!!

http://capwiz.com/celiac/issues/alert/?alertid=40856501&type=CO

[ccohenou]

Yes, I am aware that rye, barley and non-GF oats contain gluten. Thanks for your concern. 

But wheat was the major "hidden ingredient" in stuff like "hydrolyzed vegetable protein" or "food starch," and now it has to be labeled as "food starch (wheat)" if that is what it's made from. So that makes things somewhat simpler than they were in the past.

[Panserbjorne]

dd was diagnosed 6 years ago.  I was diagnosed at the same time.  Dh was diagnosed a few years later.  All our kids are now presumptively diagnosed.  Dd was tested because she was 15 pounds at a year and FTT.  Elimination of gluten wasn't all she needed, but she's amazing.  My health issues are so much better (I'd had all kinds of tests run on me with no real answers) and dh is far better too.

I would caution you against taking domperidone with the gluten connection.  Both have serious affects on the thyroid.  It tanked my health and while I needed to feed dd, I really look back and see how much longer I made the road to recovery by taking dom.  Granted I was on it for 15 months at 180 mg a day...which is a lot.  BUT across the board the people that have significant issues with it are those that have thyroid issues due to gluten intolerance.  Just really do your due diligence on this one.  It's not a matter of gluten being in the drug....it's a matter of suppressing your thyroid twice over.  It generally does help with milk supply...but at what cost?  There are other things out there that are really effective assuming you're lactating.  If you never experienced primary/secondary lactogenesis then it's a separate issue altogether.  Then I don't have any other suggestions, unfortunately.