Michi8

I cannot see how it could be celiac-related, but my son has been severely colicky since 2 weeks of age.

I have celiac and maintain a strict gluten-free diet, and did so all pregnancy. I have removed items from my diet that get through the breastmilk and bother him like peanuts, peanut butter, cabbage, tuna...

He is breastfed with one formula feeding per night (so I can pump for the sitter) and we have tried many different formulas. He is currently on Nutramigen (again only 5 to 9 ounces each night).

His growth is remarkable! He is already 21 lbs 8 oz. That is off the charts.

You'd think he is overeating, but he eats 5 oz. every 3 hours on average (I know because I pump).

So, long story short the doctor says Nathan is just fine. He sees no infection. There is no reason to be concerned about reflux or anything intestinal because he is thriving and growing at such a remarkable pace.

Sometimes he just lets loose and wails, eyes closed, back straight or arched, kicking and punching. If I leave him alone in his crib or swing it escalates to something that sounds torturous that stops and starts like AH, AH, AH! After ~ 2hours he will pass out from exhaustion. It does happen more at night but has happened in the day too.

I just don't know what more to do for the poor little guy and the doc's advice was to set him down, close the door, and walk away because he needs to learn how to soothe himself.

Anyone else have experience with something like this?

What kinds of things did you try?

Have you tried elimiating milk from your diet? (If you consume dairy that is! )

All three of my kids had terrible problems with gas as babies. And it seemed to ease their discomfort when I cut out all dairy (and was careful about eating gassy foods too.) I also drank fennel seed tea to help with gas (seemed to help a little bit.) Finally, I would try different positions for holding them. Face down across my lap was a good one...I could then rub baby's back to soothe. Also gently bicycling and pumping legs to encourage passing gas. They liked that one...a bit of interaction and distraction while working the tummy.

I once heard that reflux and gas can ease up as the baby gains weight, and that the 20 lbs mark tends to be when it settles down. That happened to be the case with both of my boys...the eldest had bad reflux until he reached 20 lbs at six months, my other son had bad reflux until he reached 20 lbs at around 10 months (I tell ya, that was a long time to be dealing with his projectile vomitting! ugh!) My daughter had reflux and gas too, but I don't remember for how long.

My now 8 year old is still high on the growth curve, but has a terrible time with consitpation and upset stomach, my 6 year old is thin as a rail and is a terribly picky eater (quick to gag and has occassional stomach upset) and my 4 year old daughter has the worst eczema I have ever seen, and complains of stomach upset sometimes too. All three have allergies, and I wouldn't be surprised if celiac is their diagnosis at some point.

Hi, Im due to have a baby any day now and although I will breastfeed first,

Im wondering about formula. I think I read that Enfamil is gluten-free, what about similac?

Any insight on this would be appreciated.

Thanks,

Amber

If you breastfeed for the first year, you can avoid giving formula altogether. The bonus is that breastfeeding is protective for baby's GI tract as well.

I just wanted to see what everyone's staple foods were when you are pregnant. We are already limited by having Celiac, and now even more limited when pregnant. I find that the cooked sushi that we can eat is just not as good as the real/raw fish. I have to most trouble at lunch. Since we aren't really supposed to eat lunch meats or tuna, what do you guys have for lunch besides a homemade salad??? I am getting sick of peanut butter and jelly! (Also getting sick of the gluten-free bread I have been eating) Any suggestions would be greatly appreciated.

By the way, I am in my 17th week, and just found out we are having a BOY!!!!! Very excited!

What about salmon? Whether it's in a sandwich or with salad, it's a nutritious choice. Chicken is good too. Personally, I chose to eat tuna anyway during my pregnancies, but was careful about not having it too often.

Since you are watching out about luncheon meats, do be careful about cheeses from the deli as well...they can be cross-contaminated with listeria from the sliced meats. I preferred to buy prepackaged pasteurized cheese from the dairy aisle instead. The luncheon meats, BTW, can be eaten if they are cooked before eating (to kill any potential listeria).

I didn't have to take the orange stuff the second time around. I was able to eat real food, but it was measured out in certain quantities...like 1 english muffin, 1 egg, 1 tbsp of butter, and a glass of orange juice...I don't know what all it was....but that was before I found out about the Celiac.

So we are TTC #3 and I refuse to take that orange stuff, but wonder if I am going to be able to do something more pleasant than the orange, or maybe I should just decline the test. Unless I am having some symptoms or something.

It's nice to hear that you were able to do the GD test with a "normal" breakfast rather than the glycola...I think it gives a much better reading about how the body reacts to dietary sugar.

However, if you had no GD issues with the first two pregnancies, then you will likely not this time...especially if you are maintaining a gluten-free diet throughout this next pregnancy. Will your midwife/doctor be following your pregnancy health & diet more closely now that you have the celiac diagnosis?

Oh, by baby 5 I wouldn't drink that hideous orange garbage!! The nurses flipped, I held my ground, the doc asked if I wanted to decline the test, I said yes, he looked at the nurses, they gave me a dirty look, I smiled, they left, no test! I figured after 4 kids already, I didn't need it!!

I was anemic during my pregnancies, all of them. It's no big deal, you just take iron and get your blood taken to test your levels periodically.

Congratulations!

I hear ya about that orange stuff! I declined to be tested with my last two babies. Actually, I declined pretty much all the tests...there was no true indication for them in my pregnancies...and some of the tests just cause too much stress to the mother given false positive rates.

Michelle

Hi Michele

Welcome to the board.

I wanted to mention that your symptoms ( exhaustion, numbness ) could also be from anemia. Iron or B12 or both. These are common deficiencies in celiacs. It is something you could treat now and not wait until you have been tested for celiac.

I was just diagnosed with both of these 6 weeks ago. And wish I had known sooner.

Marcia

Hi Marcia,

Thanks for the tip. We've done blood tests, a barium swallow and an ultrasound. Checking for everything including diabetes, thyroid disease, celiac. So far everything is showing up negative (not surprised!) Don't know if lupus has been tested for. The GI dr wants me to go in for a bone density test as well since I avoid most dairy due to lactose intolerance.

Michelle

Hey Michelle

Im new on here too, just joined the other day as far as doctors go i know exactly how you feel.

Im definalty sure that someone in this forum will be able to help you...

Good Luck i hope you find the answer your looking for...

Alex

Hi Alex,

Seems many people go through a lot of doctors on the way to diagnosis. Still a lot of misinformation out there too. Amazing how this disease can go from a rate of 1 in 3000 (still quoted by a lot of medical sources) to closer to 1 in 100.

Michelle

Hello all!

Well, I am at that point already where I have to get the glucose testing done for gestational diabetes - and was wondering if anyone knew if the stuff you have to drink - is it gluten free? I'm sure it's something similar to sugar water but I just want to make sure. Many of you have been through this already and I trust you over the people who are giving me the test!!

The anemia I am just plain worried about for some reason. I worry that I will have it or get it just because I have to be so darn negative all the time and think that the worse is going to happen. This pregnancy is just going too smoothly. Is that possible????

The Rhogam is a shot that I need to get because I am RH Negative. I am praying that I will not have a reaction to that as well.

If any of you know about these tests or medications, any input would be greatly appreciated.

Melanie

Anemia is relatively common in pregnancy. If you do need to treat it, there are options for getting iron into your system besides those awful pills (that probably have gluten in them.) Floravital (by Floradix) is a gluten-free iron supplement. The source of iron is bio-available, and much gentler on your system than the pills.

Regarding Rhogam... It is only necessary if the mother is Rh- and the father is Rh+. If the father is Rh- too, then there is no chance the baby will be Rh+. The Rhogam itself isn't necessary for the current pregnancy, but to protect future pregnancies/babies. You can choose to get it immediately after birth as opposed to during pregnancy. It's worth reading up on it, though, to confirm its safety in terms of a gluten-free diet.

Michelle

As some of you know I am studying to become a lactation consultant. My son is celiac (18 months)and breastfed. I was just reading on one of my professional sites about mothers who have celiac. We all know that breastfeeding is crucial to a baby's health especially to those who have or could have celiac (not to mention everyother germ and disease out there haha). Now studies are showing that pregnancy and lactation help to calm the symptoms of celiac in mothers. Great news! Just thought you would like to know! The horomones of pregnancy and lactation supress celiac. Very cool!

Taffy

That's interesting to hear. Do you have links to those studies? I have read that celiac disease can become active/triggered due to the stress of pregnancy and birth. In my own experience, I had an outbreak of what may have been DH just before my second child was born (it was a particularly stressful prenancy & birth.)

OTOH, breastfeeding is protective for the infants digestive tract and may keep them from develping celiac disease, or at least delay it's onset.

michelle,

welcome to the board! we are glad you're here. i hope you can get all the answers you're looking for. to me it sounds like you might have celiac, so just be patient! i agree with Carla - eat your gluten and make sure doctors know what they are doing!

carla, i heard that the hospitals are supposed to have your biopsies on record for 7 years after they were taken. is there a way you could have them sent to another qualified specialist and have them looked at again? just a thought, this is what i'm thinking about doing.

it is no fun not having the doctor care about you.... i'm sorry about that. maybe she was having a rough day. next time will be better, hopefully! good luck.

-justjane

Thanks, justjane! Naw, I don't think she was having a rough day. I think she's just used to working on autopilot...can only spare 10 minutes per visit you know! She did soften her tone a little bit when it looked like I was on the verge of tears (I hate when I lose composure!)...maybe she'll treat the rest of today's patients a little better.

I just read that here recently, too. I was tested by Enterolab, so I know for sure I have a gluten-sensitivity. Also, my dietary response has been good. I don't really need to know more than that, and I actually feel somewhat lucky that I found out and don't have an official diagnosis to follow me around in light of the discussion recently about people having trouble with insurance because of a pre-existing condition, which I do not officially have. Thanks for the suggestion though. If I hadn't already used Enterolab, I might do that.

I've been curious about Enterolab, but hesitant to try their testing since I'm in Canada. As well, if I truly do have celiac, then there is benefit in having the official diagnosis in that there is a tax allowance for the diet (not much, I know) only if you have the diagnosis. Health insurance isn't as much a worry here...just wait times for testing.

Thanks for the link, Leah! I've already found this website so helpful. I also found the Celiac book by Dr. Peter Green to be a good place to get info...it helped encourage me to finally get some testing done...I'm tired of feeling sick all the time!

Michelle

Thanks, Carla.

I'm hopeful that this doctor will to the testing correctly. Celiac disease is one of her areas of interest, and she's associated with the University research here too. If the tests come out negative, I'll continue to go through the list of possilibities...need to rule everything out.

I'm curious too, if my kids have celiac. My eldest has chronic, serious consitpation that started as a baby when he was a few months into solid foods. My middle child is thin as a rail and is a picky, picky eater. And my youngest (daughter) has the worst eczema I've ever seen. It flares up on every inch of her body. The determatologist says, "it's not related to allergies, she'll just have deal with it for the rest of her life." Perhaps finding out more about my own health will give clues to what's going on with the kids too.

Hello,

I'm a new member here...have been reading a bit over the last while...and decided to join up.

I'm currently going through some testing to confirm what, if anything, is going on with my health. I've had allergies since childhood, and in my teenage years started to develop more allergies, stomach problems (given the label of IBS), lactose intolerance, eczema, allergy-induced asthma. Since having kids I'm now constantly exhausted (regardless of amount of sleep), allergic to different foods, have skin issues, losing hair, am contstantly cold, have numbness in fingers and toes, etc.

Just got back from my first visit to the GI and am feeling so-so about it. While it took her no time, based on mine and my families' histories, to decide to book a gastroscopy (end of November!) and colonoscopy (March 2007! yikes!), she unforunately has a horrible bedside manner. I hate leaving a dr's office feeling insignificant and like a bother.

The dermatologist was about the same. He did a biopsy of a skin lesion to test for DH, but took a sample of the lesion itself...of course the test came back negative. I don't want to go back to him to ask for another test, because I just can't stand his self-important know-it-all manner (including his opinion that the only treatment for DH is Dapsone, and that the gluten-free diet is just too hard to bother with.) The next time I see him will be after my patch tests...I'll probably go to a different doctor after that, if I go to another dermatologist at all.

I'm hoping, though, that the gastroscopy will give us some answers. Celiac is a logical possibility to me, given the GI and allergy history of my extended family. My brothers have some serious GI issues especially, but they're not interested in further testing.

I know I'm not the only one experiencing trouble with doctors. I appreciate being able to vent here. Hopefully the testing will provide the answers I'm looking for.

Michelle