My 2 Year Old was just diagnosed with LC :(

Post by **tex** » Mon Sep 01, 2008 12:13 pm

Yes, orange juice, (and anything else with significant amounts of citric acid), can definitely cause D problems for someone with a sensitive, (or already inflamed), digestive system. Chocolate can be a problem for a few of us, (but very few). I suspect it's usually the soy lecithins that actually cause the problems with chocolate. It's rather difficult to find chocolate without soy lecithins, but there are one or two brands available.

I believe there is at least one brand of almond milk that does not contain any soy, though I can't recall which one, offhand. Rice Dream is not 100% gluten free, but it meets the European standard for GF, according to the Codex Alimentarius standards, (Codex Alimentarius means "food code" in Latin, by the way), which will probably eventually be adopted by this country. That standard allows up to 0.002% gluten in a product, (IOW, that's the maximum allowable limit for a product to be legally labeled as gluten-free). 0.002% can also be expressed as 20 parts per million, for a somewhat different frame of reference.

Another milk-replacement option is hempmilk, (made from hemp seed). It's healthier than cow's milk, (more Omega-3s), though a couple of us get minor symptoms from it, (gas, minor bloating), but not D.

Yet another healthy, and good-tasting drink, that most of us tolerate well, (though it's not a milk-replacer), is Polly's formula for a 50-50 blend of Welch's 100% Grape Juice, and club soda. It tastes like soda water, (due to the carbonation from the club soda), but it's much, much healthier. Be sure it's Welch's 100% Grape Juice though, because the other versions contain ingredients that are not tolerated as well, especially if she happens to have a problem with corn derivatives.

Failure to thrive is a classic celiac issue, which, of course, is due to the damage that gluten does to the digestive system, so I would think that you should certainly be able to convince her doctor that Camryn has serious food intolerance issues. A good dietitian might be able to help, but we have found that some dietitians are not sufficiently well versed in food intolerance issues of the type that most of us have. Some of them, for example, think that we only need to "minimize" our gluten intake, and small amounts are "OK". Wrong! We have to be just as strict as any celiac, and in some cases, more so. Also, a few dietitians don't seem to be aware of many sources of "hidden" gluten, so if you use processed foods, you will still have to read the labels very carefully, despite a dietitian's recommendations. It's always safest to prepare foods from scratch, of course, if you have the time.

Yes, toasters are a common place where cross-contamination occurs. Even pots and pans can be a problem, if any tiny specks of food remain anywhere in crevices, after washing. This especially applies to baking pans, since baked-in foods can be harder to remove. Your hands are also another source of cross-contamination, if you handle anything containing gluten, before handling her food, without washing in between.

Good luck with the appointment tomorrow.

Is Camryn any better today?

Tex

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 01, 2008 4:13 pm

Thanks for the info. She seems fine with the soy milk...its just when it is chocolate soy milk that she gets a horrible reaction. Her allergy skin tests came back positive for cocoa bean...so I wonder if that is part of the problem.

I'm definitely going to have her try the grape juice and club soda. She thinks a sip of soda is a treat...so she will love it.

So....yesterday she was HORRIBLE and today she had solid poops! Totally solid...she even said "look mommy, it's hard". Could the gluten-free diet be working? I don't want to get my hopes up...but she NEVER has solid poops.

BTW - we tried Mrs. Leeper's Cheeseburger Macaroni today and it was great! I even ate it and liked it. Camryn really liked it too...she said "ooooooh, yummy!".

If anyone else has info for me to take to the Dr. please let me know. I'm compiling everything. I feel like a lawyer that is defending a case...haha!

Post by **tex** » Mon Sep 01, 2008 4:46 pm

You may well be right about the chocolate. Some people definitely have a problem with chocolate.

Camryn's Mommy wrote:Could the gluten-free diet be working? I don't want to get my hopes up...but she NEVER has solid poops.

Sure it could be working! That's great news! That doesn't mean that there may not be setbacks from time to time, but it sure sounds as though you're on the right track, (and so is she, of course). Hopefully, all that remains now is to fine tune her diet, and allow sufficient time for her GI system to heal, before adding back in some of the foods that she will eventually be able to tolerate, in the future, (such as more veggies and fruits). If you're having any Enterolab tests done, those results will help a lot, when it comes to making decisions about food choices.

I'm very optimistic, and I hope you are too, after that good news.

Tex

JLH · Post by **JLH** » Mon Sep 01, 2008 5:49 pm

GREAT news, thanks for sharing.

I'm so glad she is doing better.

sunny · Post by **sunny** » Mon Sep 01, 2008 8:24 pm

Hi Camryn's Mommy!! my heart just went out to you when I read your post. We have 13 grands and I can appreciate just how difficult this is for you both!!! I was thinking of Camryn feeling badly about the bout of D that went everywhere.....perhaps it would help to tell her stories about a gramma that you just met here on line who has had that happen too!!! "Her name is Sunny ...Gramma Sunny to her grandkids, and she has had accidents like Camryn''s in furniture stores and at home and at her grandkids houses and here and there and everywhere!!! She has an illness/disease called LC and she just can't help it!! but slowly she is finding that her medicine has helped and changing what she eats is helping too!! And she hardly ever has any accidents now!!!!! " And that's a happy ending to one gramma's story ;-}

It helps kids to have their experiences "normalized" by hearing of others who have gone through what they have. There are so many new friends here on this board that you could also tell stories about and that may help her get through this difficult time in her life. I have a 9 year old granddaughter who is gluten sensitive and reacts with big sores on her legs and tummy. She has had to learn over the past few years what she can and cannot eat and is able to let others know her limits and she reads all labels if she is in doubt. So Camryn will learn as she gets older how to manage her diet. For now, you[re it! and what a wonderful job you are doing!!! so glad you found this forum!!!

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 01, 2008 8:42 pm

Thank you Sunny - I will tell her. What meds did you take? I really don't want her on any meds since she is so young. It makes me so sad that I want to cry. Today's solid poop made me so happy....it is funny the things that make you happy with this disease. I'm just worried to check the next diaper.

I will fill everyone in tomorrow after her Dr. appointment.

Good night!

kate_ce1995 · Post by **kate_ce1995** » Tue Sep 02, 2008 5:10 am

Yeah! Solid Poop! That is a cause for celebration around here. I believe many of us have seen the switch over night like that too when a reaction gets under control. We are all reluctant to use the word remission too soon, but what a wonderful feeling for both of you :)

I've been having a reaction for about 6 or 7 weeks now, and I feel like I'm finally starting to turn the corner back to "normal". I had one day this weekend with no poop, and 2 days with only one episode a day. Each of those was somewhere from semi solid to soft serve, but so much better than pure D! And, I've even eaten quite a bit of lettuce and it hasn't flared it up. I may be pushing my limits, but I'm taking a salad for lunch today. I miss salad.

Hope that doctor's appointment went well. It sounds like you are on the right course regardless, but I know it feels better when a "professional" has the same opinion.

Katy

JLH · Post by **JLH** » Tue Sep 02, 2008 6:48 am

"Soft serve".

Dairy Queen will never be the same again. Not that I can have it.......

Gloria · Post by **Gloria** » Tue Sep 02, 2008 8:56 am

It's time to celebrate when you see a solid poop! :party:

We all celebrate with you! Every visit to the bathroom (in your case, every diaper change) is a test and we always hope we pass.

Gloria

sunny · Post by **sunny** » Tue Sep 02, 2008 1:11 pm

Hi C's mommy.... I was on Entocort for about 6 weeks which did the trick for me until I developed c-diff and then the night mare started. Long story short I fired my GI doc and self referred myself to Oregon Health Sciences University and saw a GI doc who also teaches and she now has me taking immodium and pepto bismol. They requested and checked my biopsy so it would not have to be repeated and I hand carried my records. I think you could do the same with Camryyn as someone (Tex?) suggested rather than repeating her colonoscopy. Looks like you are on target with the G/F diet for her. Many good thoughts and prayers are coming your way. Interested to see how the doctor visit went today.

Camryn'sMommy · Post by **Camryn'sMommy** » Tue Sep 02, 2008 1:41 pm

So.....there have been NO poops for 24 hours....ever since the solid one. This has not happened in 5 months. I'm crossing my fingers! Thanks for your support.

Update on Dr. visit:

- Agrees she should be on a gluten-free diet...she says to continue with dairy for now unless she isn't improving. Advised to remove OJ, grapes and chocolate (or anything that has caffeine).

- Still advises another colonoscopy, but she said she won't pressure us to get it. She said if the gluten diet doesn't work in a month that we should get it done. She said the medication she would prescribe would depend on the extent of the damage - whether it is the full length of the colon or just the sigmoid. Also, she said that she wants it redone to make sure it wasn't a "fluke"....I'm sure Tex will have something to say about this :)

- She wants her to have blood work done for autoimmune problems: AB Anti-Parietal, Anti-Thyroglobulin, anti-microsomal Ab. (what does this mean???)

- She wants her to eat Activia every day.

- She said to try 1 tsp of Imodium AD if the gf diet doesn't work soon. We can do that up to 3x's a day. She is worried b/c she isn't gaining weight....she's still at 30 lbs.

- She said that of the 30 Drs. at CHOP (Children's Hospital of Philadelphia) there have only been 2 cases that they know of. One was a patient that had diarrhea her whole life, but wasn't diagnosed with LC until well into adulthood. The other was one of the Drs. at CHOP - I believe it is a male in his sixties. They have seen no cases in children.

- If the gf diet doesn't work, she might put her on bismuth....but is hesitant b/c she doesn't know the long term side effects....especially in someone as young as Camryn.

- I brought up the Enterolab tests and she was VERY skeptical...she said it sounds like someone trying to make $.

Camryn was an absolute nightmare at the hospital. She is very high-energy and she did not want to be there. She was a handful and a half! She had a full-blown temper tantrum...not a good time. She remembered the hospital and got scared.

Has anyone tried Pumpkin seed oil? My Dad found a newspaper article that said it helps IBS and UC. It might be worth a try. I think we'll try the Aloe Vera juice too.

On a side note - my Mom was diagnosed today with Hashimoto's Thyroiditis....AKA Chronic LYMPHOCYTIC thryoiditis. Weird, huh? I think we have crappy autoimmune genes!!

Hope everyone is having a D-free day! :)

JLH · Post by **JLH** » Tue Sep 02, 2008 3:05 pm

My doctor poo pooed (pun intended) it, too. But I said NO to her, twice. Once when she asked if I wanted to use Prometheus Labs (recommended at all her conferences) and again when she asked if I wanted to use an allergist (my Dad was one) instead of EL.

I know that Tex and Polly and lot of PP recommend EL and I trust their knowledge and experience. Read the info on the EL site and see what you think. I am totally happy that I got the whole enchilada (GF, of course) there.

I'm so glad Camryn is doing better.

Sara East · Post by **Sara East** » Tue Sep 02, 2008 3:19 pm

So some of you have periods of no D?? I didn't know that could happen, I wonder what I'm doing wrong? I've had LC for 7 years now and not a single day has gone by without D multiple times a day. Is having periods of remission common? Is there anything besides drugs and diet that has helped stop the D at least for a while? I've tried all kinds of drugs and diets too...cutting out certain foods, dairy, etc and so far no improvement, even for one day. I'd kill for a few days straight of no D :)

Camryn'sMommy · Post by **Camryn'sMommy** » Tue Sep 02, 2008 3:46 pm

Camryn only had a few days in the last 5 months with no D and it was in the beginning. When it started she had D for 2 weeks and it went away for 3 days....came back for 2 weeks and went away for a couple days...and it has been back ever since. Today is the 1st day since then that she hasn't had D (knock on wood).

I forgot to mention the Dr. said this might have been caused by the Augmentin she took prior to the onset of D.

JLH · Post by **JLH** » Tue Sep 02, 2008 4:52 pm

YES, I was doing very well after I went GF. I even had to resort to prunes and prune juice to get my sample for EL!

Then I started doing worse and that's when I did the second test that showed soy sensitivity.......

My yeast and eggs are close to the borderline, being 1 and 2 units away from the norms. I'm a bit nervous about that.