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Celiac - new possible diag for my 2 yo dd: What to avoid? page 2
Celiac - new possible diag for my 2 yo dd
April in the US
Member


Posted: Oct 12th, 2008 at 06:01 pm

The pasta brand that Nate (oldest DS) likes and eats safely is Ancient Harvest quinoa-corn pasta. He's not crazy about the Mrs. Leepers for some reason.

If you ever get to the point of being able to reintroduce rice, then Tinkyada is the best brand, hands down.

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
[ Guest ]mom2twoangels
Posted: Oct 12th, 2008 at 06:13 pm

Thank you both AGAIN.

April, I did amazingly enough find a frzn pizza that I think is safe for her I need to re-read it and look up a couple of items I haven't heard before. It was from Ians.

I think right now she is having a little trouble digesting dairy - the Ians I bought was soy, I am hoping that once her tummy starts healing that will go away. I think the pizza sounds delicious though. I am also going to try and find the Cheech's around here somewhere.

My son is still testing pos to a couple of treenuts so we are avoiding all tree nuts for now.

I think I will wait until I figure out my daughters fav's and then see if they can merge on to one or two things at first.

You know who - I just bought Mrs Leepers but we haven't cooked it yet.

YouKnowWho
Member


Posted: Oct 12th, 2008 at 08:50 pm

I should say that we were not fans of Mrs. Leepers rice pasta - Tinkyada was the best tasting option out there.

We passed on the corn variety because at the time we were possibly dealing with a corn allergy.

But it flitted into my brain in thinking it might be safe for you because when rice isn't an option, I know it's harder.

USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies

AllergyMum
Member


Posted: Oct 30th, 2008 at 05:47 am

Oct 7th, 2008 at 07:37 pm, YouKnowWho wrote:
Some people continue to use gluten-free oats but that is still debatable in the gluten free community (oats are almost always shipped with wheat or flour so cross-contamination is an issue).


When my son was allergic to oats but not wheat.... However we could not eat any wheat because of cross-contamination. Before we know of his allergies, he got pretty sick when I (breastfeeding) & he ate wheat. Once he outgrew this allergy, he had not problem with wheat.

I would speak to your doctor about this one, but until then would recommend avoiding oats as well.

DS - under 2 yrs - dairy, egg, peas, peanuts, tree nuts, acetaminophen & penicillin with eczema

Outgrew - oats at 15 months
Canada
catelyn
Member


Posted: Nov 3rd, 2008 at 01:00 pm

I read somewhere that the issue with wheat/oats is they are grown in the same fields so its natural contamination not a processing issue.

I'm curious if her rice issues are really rice cross contaminated with wheat issues.

I find people don't get celiac even when you say wheat allergy which I've been finding is far easier. I actually had a very ignorant "friend" say so you get D what is the issue. Well, I don't get D but my insides are damaged and I have a slew of other issues from it including anemia. If it was ONLY D then yes, it wouldn't be such a big issue.

Canada

DS 15
DD 11 Tree Nuts and peaches
DS 7
mom2twoangels
Member


Posted: Nov 4th, 2008 at 11:44 am

I have family who had the same thoughts on the rice / wheat cross contam issues. She had severe vomitting @ 2 1/2 hours after eating rice several times when she was about 7 months. She started wheat when she was one and seemed fine with it until 2 months ago (she turned 2 in june) when her bad tummy troubles started - she was losing weight quite quickly as well so we are lucky we got it figured out. It certainly wasn't just D for her.

I'm sorry you friend doesn't understand - I feel like people are looking at me like I have 3 heads when I start telling them Ige for this kid and celiac / Fpies food intolerance for this one.

Nichele,

DS, 7 Ige to Peanut and Treenuts
DD, 3 Celiac
April in the US
Member


Posted: Nov 30th, 2008 at 11:36 pm

Can I join you in having two heads? Smiley

There are times when I wonder if it's all connected, or if it's just a strange coincidence...

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
catelyn
Member


Posted: Dec 1st, 2008 at 12:57 pm

Have you heard back about your DD yet?

We had a big group dinner at a restaurant on the weekend and I was telling the wait staff no wheat (and they were really good about it). ONe of the moms askd if I was celiac and said her DD had been tesed and was + on the blood work and neg on the biopsy and "thank god she doesn't have it" Grrr. I could NOT convince her that tsting + on the bloodwork was a bad thing and that at some point she likely will tst pos on the biopsy. I told her it was never neg just inconclusive that could just mean they missed damnage. I feel bad for her kid bc she said she is a really small teenager and they told them she'd be lucky to make it to 5'. I wanted to smack her and say take her off wheat but she was adament that she was fine and "just small" and has enough to deal with. Grrr. Some people. Can you imagine 20 years from now with this woman gets a celiac dx and they tell her her growth is stunted? I just wanted to slap the mother. I'm pretty sure my own growth was stunted even though I'm a normal height because I come from the land of giants and at 5'6" I'm a good 6" smaller than anyone in the family.

Canada

DS 15
DD 11 Tree Nuts and peaches
DS 7
mom2twoangels
Member


Posted: Dec 1st, 2008 at 02:06 pm

Of course you can join me in having multiple heads the more the merrier Smiley

Yes we have heard back everything came back positive for Celiac. The bloodwork was 100 (my ped said usually around 8). The surgeon went ahead and had us put her on a gluten free diet right after the biopsy he said it looked positive so to go ahead and then called a few days later confirming it.

Interesting that you brought up that it can effect growth. I have been really worried about her growth, she weighs very close to the same she did almost a year ago. I have to call the ped to see what her height was. I have a appt with the GI next week I plan on discussing it with him then. I was hoping that once we went gluten free she would start growing again. I guess we have only been gluten free for 6 weeks or so maybe it takes longer.

I am still having trouble getting the rest of her diet figured out as well. In addition to removing gluten, it seemed dairy was bothering her so I substituted soy then she seemed to be getting D so I switched her to lactose free milk and that seemed to help although she still complains of her tummy hurting sometimes all of which is very hard to interpret from a 2 yo.

I'm sorry you couldn't convince the mom. I don't know why people refuse to listen.

I appreciate everything you all share with me!

Nichele,

DS, 7 Ige to Peanut and Treenuts
DD, 3 Celiac
catelyn
Member


Posted: Dec 1st, 2008 at 06:32 pm

Soy really REALLY bothers me. I'd have a HUGE stomach ache if I drank soy milk. I don't have issuses that I know of with cow's milk. The nutritionist I saw told me to avoid oats for a year which I haven't been religious about because oatmeal is one little bit of normal for me although I did go a good three months w/o eating it.

I have NEVER liked pasta. I'd always be starving after having pasta for supper. Now I know why. I can and do eat rice pasta for supper the odd time and I'm good with that. I've also never been a sandwhich person. I don't think I had bread for months before my dx just because I never really liked bread. Odd how that all works out. At one point I thought I had peanut issues because I had pb on an english muffin and got really sick. Low and behold, it was the muffin not the pb. Same goes for an episode last winter where I got horrifically sick after having a coffee and dounut one morning. I was convinced it was food posioning beause nobody else got sick but... It all makes sense now.

Your lucky you realized with your little one early. My kids are essentially GF and have been since this summer. BOTH of them have grown 2" since august. They had some antibodies but not enough to call it celiac. I still think its too much of a coincidence they have both grown that much in that kind of time frame without it being that diet change.

Canada

DS 15
DD 11 Tree Nuts and peaches
DS 7
April in the US
Member


Posted: Dec 1st, 2008 at 11:40 pm

The milk issues might be temporary. In Celiacs with active disease, the intestinal villi are damaged or "blunted." The tips of the villi are the part used to help digest milk - they are the first damaged, and the last to recover. Some doctors recommend that newly diagnosed Celiacs drop milk/lactose from their diet for 6 weeks to 6 months. Once the villi are regenerated, then the person can have milk. If this is the case, your daughter might be able to tolerate lactose-free products and/or take a lactase supplement until she is healed.

Warning: Lactose intolerance tends to reoccur when one gets "glutened" by accident. So an accidental glutening should be a reason to drop dairy for a few days to a week...to avoid adding insult to injury.

I should mention that a smaller percentage of Celiacs find that they are intolerant of casein, a protein in milk. Casein intolerance is different from lactose intolerance and tends to be a permanent problem similar to gluten intolerance. Symptoms vary.

After diagnosis, I dropped milk for several months, then reintroduced it. No issues. My husband thought he was lactose intolerant for years...later found out that he was Celiac. After he healed, he could drink milk with no issues.

Some Celiacs find that they have additional food intolerances that get unmasked when they go gluten free. I'd say soy, corn and milk are the ones I hear about the most from other Celiacs, but I have heard of peanut from a lady I visited with while shopping one day. Personally, my body seems to confuse corn with gluten, and coconut gives me migraines now that I am gluten free...it never did before! My doc says these intolerances are more commmon in adults who went for years eating gluten...their immune system can get confused.

Like you say, it is hard when she can't tell you much about what's going on. My money would be on the temporary lactose intolerance, since that is a very common thing with Celiacs.

Last Edited by April in the US Dec 1st, 2008 at 11:42 pm

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well