Children with Celiac Disease - Page 2

[Panserbjorne]

Originally Posted by kittywitty 

Thanks. I got back ahold of the doc. Forgot to ask the specific numbers, but she said IgG was + but IgA was negative. We reintroduced gluten and we're seeing an allergist next month, so hopefully we'll figure something out.

if the IgA is to depressed it will look like a negative result if the person isn't overly familiar with how to read the test.  As in the lab may have said negative on it's own, but when combined with other values it wouldn't be.  This *could* qualify for a false negative diagnosis.  I'm not saying it does, just that there are nuances in the testing.

[CrunchyChristianMama]

My mom just called and the whole family (10 people) are coming down for the weekend this weekend (we live in KC).  There is a hotel/indoor water park here that's really fun that my mom wants everyone to stay at.  Part of me thinks it's going to be really fun, part of me thinks it's just going to be a whole lot of work.  I'm going to have to pack 5-6 meals plus snacks for DD that don't really need warmed up because there may not be any way to do that.  This should be interesting.

[scsigrl]

Ask for a fridge in your room. You may be able to get a micro as well.

Peanut butter/Sun butter

Rice cakes

Cherrybrook Kitchen pancakes (can be eaten out of the fridge or get a micro in the room)

Lunch meat (Applegate Farms pre packaged it GF with no risk of CC)

Rice crackers/ Mary's Gone Crackers crackers or pretzels

[CrunchyChristianMama]

I just called and spoke to the chef because the rest of the family will be eating the breakfast buffet at the hotel each morning.  He was awesome!  I didn't even have to explain what cross-contamination was.  He let me know what items are gluten-free and that their oil is not safe because the chicken fried steak is cooked in it.  He also said they would cut up fresh fruit for her so that she doesn't have to eat it off of the buffet in case people dropped anything gluteny on it.  I'll still pack lunch and dinner for her since we will probably be eating at different restaurants, but it's nice to have one meal to not have to pack! 

Another quick question though.  She has been having the reaction the last few nights where she wakes up in the night screaming.  She's only been eating at home though and I'm super-careful.  Our whole house is gluten-free, new utensils and cookware and everything since the diagnosis.  There are two possible factors though.  First, she had the stomach flu last week and was waking in the night with that and got used to us going in there everytime she woke up instead of just putting herself back to sleep like she usually does without a peep.  She may have just decided she likes having company in the night.    The other is I have made a couple GF desserts with processed sugar this week (I usually only bake with honey and maple syrup) and she has been sampling them.  Since her gut is presumably still healing up, could just having sugar and such that she's not used to be agitating it? 

[CrunchyChristianMama]

We survived the weekend.  It seems that she got a little cross-contamination exposure somewhere though (not too surprised) because her behavior this morning is really erratic and cranky, she's had a potty accident, and she has a slight rash starting on her leg.  These are all her classic gluten signs. 

[elonwy]

A few things: Celiac Disease, as an autoimmune, primarily manifests in the gut but can also be related to a number of different symptoms and can manifest in other places, like joints and also can manifest neurologically (though this is rare and often very debilitating). 

The diet of the cows had nothing to do with the casien issue. (The protien in dairy that Celiacs react to) Celiac Disease causes damage to the villi in the stomach, The villi look like little trees (kinda), with each branch releasing the enzyme that deals with a specific protien. The very tip of the villi is the location of the enzyme marker for casien. When damage is present, you no longer have the enzymes needed to deal with casien, which then causes issues. In some cases in adults when the damage has been present for many years without diagnoses or continued levels of low-level contamination, you never get this back. This is why many celiacs only have issues with dairy in the beginning, but can eventually return to eating dairy after their guts have healed. However, being a celiac predisposes you automatically to being intolerant to other foods, which can also be the case. 

As far as your mom is concerned, I have found that a lot of people have trouble dealing with the concept of food intolerances when they have never dealt with it themselves and have a hard time believing that something everyone else eats can cause harm to you. This just ends up being a matter of time and education. And lots and lots of patience. 

CD can manifest in a crazy amount of ways as seen by this list: I highly recommend the site Celiac.com and their message boards for information and community in regards to this disease. (I stole the list from their site)

• Abdominal cramps, gas and bloating
• Anemia
• Borborygmi (stomach rumbling)
• Coetaneous bleeding
• Diarrhea
• Easy bruising
• Epitasis (nose bleeding)
• Failure to thrive
• Fatigue or general weakness
• Flatulence
• Fluid retention
• Foul-smelling or grayish stools that are often fatty or oily
• Gastrointestinal symptoms
• Gastrointestinal hemorrhage
• Hematuria (red urine)
• Hypocalcaemia/ hypomagnesaemia
• Infertility
• Iron deficiency anemia
• lymphocytic gastritis
• Muscle weakness
• Muscle wasting
• Nausea
• No obvious physical symptoms (just fatigue, overall not feeling well)
• Osteoporosis
• Pallor (unhealthy pale appearance)
• Panic Attacks
• Peripheral neuropathy (nerve damage)
• Stunted growth in children
• Vertigo
• Vitamin B12 deficiency
• Vitamin D deficiency
• Vitamin K deficiency
• Vomiting
• Voracious appetite
• Weight loss
• Obesity

[elonwy]

Oh I think someone also mentioned something about constipation? When switching to GF replacements, the primary ingredients in a lot of these things are rice flour, which can cause constipation quite easily. Brands that supplement with things like nut flour and pea starch can help prevent this issue. (Like Pamelas and Kinnikinnick.)

[CrunchyChristianMama]

My DH and I were looking through old photos last night and found this picture of my DD pre-diagnosis.  It makes me sad to see how sick she looks.  In the pic she is with my MIL and is smiling because she just used her little potty.

[sraplayas]

CrunchyChristianMama--thanks for starting this thread!

I have a question--DD (5.5) was tested IgG in October and showed positive for Gluten (among many other things!).  My maternal aunt has Celiac and I am wondering if it might be a good idea to get a CD test.  She was diagnosed in her 60's and quite a bit of damage has been done. :( What do you all think? 

We are GF, Corn-Free, Yeast-Free, Nut-Free, etc. etc.(!) at home (even DS, who, according to his IgG, has wheat but no gluten) and the kids are being treated homeopathically for their allergies but I am thinking that if she is Celiac that is another issue and it might be helpful to know.

Thanks for your input!

[scsigrl]

If your kids are GF already, you aren't going to get accurate testing results.  Except for the gene test. It's pretty useless unless you have the other tests too, one more piece but comes pretty far down the list.  Something like 80%+ people have at least on of the 2 genes so knowing that isn't really *that* useful.  Only thing it is really good for is saying they DO NOT have it (though there still could be an intolerance) and there are *some* who test - on all the tests but really DO have it (though that is VERY rare).

Exact science ;)