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nmlove

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nmlove Contributor
nmlove
Posted

Hi there - wanted to introduce myself, family and our situation. I've been reading a lot of back posts and this group seems very active and very helpful, thanks already!

My 4.5 year old son had a positive blood result for celiac disease. We're still awaiting the GI appt (Nov 10th) for confirmation. The more I learn about celiac disease the more symptoms I realize he has shown (though most have been mild). Oops and I consider myself pretty aware of my kids. Oh well. Even his ped said it was a disease of master disguise. The reason being is that I questioned his bowel habits back in March at his 4 year check-up. He's always had multiple bms since birth but it seemed like his kept going from regular to diarrhea and back again all within a day. It kind of snuck on me so I'm not sure when I thought, "gee, is this always going to be like this?" Anyway, at the same time last year we were going through a different medical problem with my son (turned out to be a fungal infection that affects the lungs) so I was going to add the test the next time he had some blood work. Turns out they were just going to do a finger print so I opted not to do it at that time - my son had had enough tests done on him by that point I thought the finger prick would be a nice change! Well, once he was on the anti-fungal meds, his bms seemed to get more regular (though still plenty of them) so I put it out of my mind. When I had my baby in June and saw the ped again, I mentioned how his bms seemed to be a lot better he said it could still be celiac disease because sometimes that's how it presents, ie, when someone's sick the physical symptoms get worse. So, ok, I thought, the next time he has blood drawn I'll tack the test on. More to rule it out since I didn't think it'd be positive! Rewind back a few weeks at the beginning of September when I took my son in for unexplained leg pain and limp (scary!) so of course blood work was called for. Tacked on the test and here we are...

Of course the more I read on it, the more paranoid I get about my youngest son (2.5) and already worry about my daughter (3 months) who already shows food sensitivities! Life of a mother! No one in either family has celiac disease - not that anyone's been tested. But I definitely see traits in my family at the very least and would not be surprised if many do have it (including me - I plan on being tested as soon as figure out my son).

I'm sure we'll have to go gluten-free at some point so I'm using this time between now and then to work on things that could affect cc. Becoming extra-vigilant about handwashing. Probably a good thing with cold/flu season already upon us. Eating only at the table - something we've definitely gotten away from as far as snacks since having the baby! And will work on cleaning/separating out the kitchen stuff. I won't buy anything yet until I'm absolutely 100% positive just because of keeping budget down. Maybe going ahead and buying (if I need to) personal products that are gluten-free just because ds has a nervous habit of putting his fingers in his mouth. Came out of the medical spring drama. I can already see future issues arising when we go gluten-free but I'm choosing to focus on the now and let them lie until I need to face them.

Glad to be on here. Forgive the length but intros usually aren't two sentences! :D

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

Sounds like you are heading toward a gluten free kitchen in the near future. You all will feel better. Don't worry, yes a lot of gluten free items are costly. You don't have to buy the special foods there are normal everyday foods that can be eated. Just think meat and veggies instead of packages of prepared food. Yes, it will take more time but the crock pot is a good friend to have in your kitchen. Toss in some items in the morning and presto by dinner it's ready without you running around in circles.

happygirl Collaborator
happygirl
Posted

Welcome! Happy that you have found this site for support. Are you having the endoscopy/biopsy on Nov. 10th, or just an appointment with the GI on that date?

All first degree relatives of diagnosed are recommended to be tested for Celiac, regardless of symptoms.

Let us know what we can do to help!

nmlove Contributor
nmlove
Posted
  • Author
Welcome! Happy that you have found this site for support. Are you having the endoscopy/biopsy on Nov. 10th, or just an appointment with the GI on that date?

All first degree relatives of diagnosed are recommended to be tested for Celiac, regardless of symptoms.

Let us know what we can do to help!

It's our first appointment with the GI after referral from ped. Children's Hospital. I do plan on being tested. After reading over the various symptoms and based on past (and current) health, I wouldn't be surprised if I wasn't at least gluten sensitive. I've been wanting to do an elimination diet for awhile but it's not something I wanted to do while pregnant/breastfeeding which has pretty much tied me up since 2004! Trying to get my husband to test also. He's more afraid of being positive and having to go gluten-free. I told him he's a man and can make his own decision. I wanted him to so if anyone else is positive my son knows he's not alone. Not sure on testing my 2.5 year old yet or not because of the false negatives I keep hearing about. Maybe something to bring up with doc. Thanks for the welcome!

ang1e0251 Contributor
ang1e0251
Posted

Welcome, it seems like you have a good handle on things so far. When you have more questions you can come here any time.

elle's mom Contributor
elle's mom
Posted
I've been wanting to do an elimination diet for awhile but it's not something I wanted to do while pregnant/breastfeeding which has pretty much tied me up since 2004!

I can totally relate to your situation; either pregnant or nursing since Aug 2002 (minus a few months here and there in between)! I just wanted to reply about your 3 month old who've you mentioned already shows signs of sensitivities: if you're breastfeeding, whatever you eat is getting to her via route of your breastmilk. I understand your not wanting to do an elimination diet while you're nursing, but it may just something you want to consider. You may have read some of my previous posts on this topic, I have a case in point little one who started out very "colicky" and as soon as we figured out what I could/could not eat she has been a dream child ever since. The diet is hard to get used to at first, but if the baby is benefitting too, it will really make your life easier in the long run, trust me!

nmlove Contributor
nmlove
Posted
  • Author
I just wanted to reply about your 3 month old who've you mentioned already shows signs of sensitivities: if you're breastfeeding, whatever you eat is getting to her via route of your breastmilk. I understand your not wanting to do an elimination diet while you're nursing, but it may just something you want to consider. You may have read some of my previous posts on this topic, I have a case in point little one who started out very "colicky" and as soon as we figured out what I could/could not eat she has been a dream child ever since. The diet is hard to get used to at first, but if the baby is benefitting too, it will really make your life easier in the long run, trust me!

Did you do an elimination diet to figure it out? I read over the Dr. Sears ED and it seems extreme. Cutting out dairy has helped immensely but there's still questionable foods that I'm trying to weed out. Chocolate, orange juice are for sures but other items I haven't had consistent results. Oh, and I've been soy free too but have to challenge it (didn't want to confuse dairy free results if she's also soy intolerant).

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elle's mom Contributor
elle's mom
Posted
Did you do an elimination diet to figure it out?

No, I didn't do an "elimination diet" per se; the way it went for me was this: since my 4yo was already diagnosed with celiac, and looking back she had been the same "colicky" way as an infant (before we knew), I had a hunch of what to try for this one. I eliminated gluten first; my baby got, I would say, maybe 70% better within the week. I got some sleep and I was happy. About two weeks later I consumed an unusually large amount of dairy, not on purpose, but realized she got much worse again. So I quit dairy; 100% better within a day or two. Then after about another two weeks, I started to wonder if maybe the dairy was the problem all along, and not the gluten. So I had some non-dairy gluten items for a few days....much worse again, this time there was about a 4 day delay. I've since then done another dairy trial and back to worse again. She seems to react to dairy much quicker than the gluten. By this point I feel too badly to do more trials so I am leaving it alone for awhile. It has made a world of a difference for her though. If there are multiple sensitivities I'm sure it would be more difficult, you'd almost have to do an elimination. I can just attest to what a difference figuring it out has made for us, almost unbelievable until you've witnessed it. Good luck, let us know what happens.

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