Failed Oats: Who can believe it?


Posted by: ellen2 , Feb 26,2008,00:59  


Just got labs back for my 12 year old with CD who got well on exclusive elemental diet after the meds weren't enough. After a year roller coaster of off-food=well, on-food=sick, for a little over 2 years we've been adding back one food at a time every few weeks. The approach has been great for him as he's now 130 pounds, 5' 2"+, has no symptoms whatsoever and is actually begining puberty. The only foods he can not eat now are corn, chocolate, gluten, milk (though he has other dairy), and a few things he hasn't wanted to try like fish.

After 2 1/2 years of no gluten, last month he tried oats. He loved instant oatmeal for breakfast, Powerbars at lunch, and I made the best apple crisp. No symptoms unless you count a rash on his legs and some acne (and this is a boy who gets all the noisy symptoms because he has primarily large intestine disease). However, nurse called today and labs got worse -- sed rate 5-10, CRP 1-4. So doc wants him off oats for a month and retest.

It's such a disappointment to go backwards, particularly when he had planned to move forward to wheat as his next food trial now.

Anyway, just want to have a little pity party. Wouldn't you think we would see the foods he reacts to? Good thing his disease shows so well in a blood test. Now I need to be patient until the next. Though I don't worry the way I used to,patience is never my strong suit.

Best, Ellen



Replies:
Re: Failed Oats: Who can believe it?

Re : Failed Oats: Who can believe it? --- ellen2
Posted by: Svetlana , Feb 26,2008,21:23 Top of Thread


Ellen,

Forgive me, but what is SED rate 5-10? Do you mean between 5 and 10? What are the normal numbers for your son that indicate that foods don't cause problems for him?

Re: Re: Failed Oats: Who can believe it?

Re : Re: Failed Oats: Who can believe it? --- Svetlana
Posted by: ellen2 , Feb 27,2008,01:34 Top of Thread


Sorry, the sed rate was 5 and moved to 10. CRP was 1 and moved to 4. Off food my 12 year old has a sed rate of about 2 and a CRP of .2 or lower. Before elemetnal, sed rate went as igh as 70s and CRP went as high as 60s. So these numbers aren't horrible for him, just trending the wrong way.

Best, Ellen

Re: Failed Oats: Who can believe it?

Re : Failed Oats: Who can believe it? --- ellen2
Posted by: LindaC , Feb 26,2008,09:02 Top of Thread


Hi Ellen,

Just a thought...

What kind of oats did you use? I read that some oats can be contaminated with gluten from the processing plant. Perhaps some gluten is the culprit, rather than the oats?

Bob's Red MIll sells oats that have been processed in a gluten-free plant. Check out:

https://www.bobsredmill.com/GFOats.php

Congrats on the great weight and height! Speaks so well to all your efforts!

LindaC

Re: Re: Failed Oats: Who can believe it?

Re : Re: Failed Oats: Who can believe it? --- LindaC
Posted by: curlyqsmom , Feb 26,2008,11:38 Top of Thread


good point. I think I was reading something about that on the Eosiniphilic board. If I can find it I will pass that along.

Re: Re: Re: Failed Oats: Who can believe it?

Re : Re: Re: Failed Oats: Who can believe it? --- curlyqsmom
Posted by: Virgie , Feb 26,2008,12:01 Top of Thread


Very true. Good point. Sorry I forgot about that. Like I said my daughter hasn't been missing oats as much as other things with gluten - like Pizza at Pizza Hut.

Glutenfree.com is a good place to buy from.

http://www.glutenfree.com/cereals/hot-cereals/category1236

Hope that will help for him.

Good thinking again Linda!

Virgie

Re: Re: Re: Re: Gluten-Free Oats

Re : Re: Re: Re: Failed Oats: Who can believe it? --- Virgie
Posted by: ellen2 , Feb 26,2008,18:14 Top of Thread


Yep. I know all about the cross-contamination issue. Just thought that at this point a little bit of cross contamination wouldn't make a difference (and the instant oatmeal was so attractive).

If we end up trying oats again some time, I guess we'll know we have to be more careful. Thanks for the suggestions, Ellen

Bad luck

Re : Failed Oats: Who can believe it? --- ellen2
Posted by: heather(uk) , Feb 26,2008,07:26 Top of Thread


Hi Elen

I was sorry to hear this. We use oats for my son and he seems to do fine on them. I have read several places that they are really good for IBD due to the soluble nature of the fibre they contain. Flapjack and oat crackers are staples for my son and also oat cereals.
However your system is so good, I really envy the idea that having tried them and failed you can then remove them and he will be back in full health with no exclusive necessary, I hope it is at least some consolation - to you if not your son!! It does seem unfair that it's often the foods that they enjoy and crave that are the culprits.

Hang on in there and here's to good labs in a month.

Heather

Re: Baseline

Re : Bad luck --- heather(uk)
Posted by: ellen2 , Feb 26,2008,18:17 Top of Thread


That is a paradox that they love the bad foods isn't it? So far we've had good luck getting back to baseline after each fail just by taking the new food out. I have that little nagging worry that perhaps this will be the unusual time, but I try to put that worry in the background until next month (by which time it should be unnecessary). Glad to hear you all are eating and doing well. All the best, Ellen

Re: Failed Oats: Who can believe it?

Re : Failed Oats: Who can believe it? --- ellen2
Posted by: curlyqsmom , Feb 26,2008,06:46 Top of Thread


Ellen,
Sorry to hear the news. DO you think you'll trial it again in a more "controlled" environment?



Re: Re: Failed Oats: Who can believe it?

Re : Re: Failed Oats: Who can believe it? --- curlyqsmom
Posted by: ellen2 , Feb 26,2008,18:18 Top of Thread


Not in the foreseeable future, but perhaps come Fall. I'm cheering for fish after baseline. Let's see if I can get him to touch a piece?! Best, Ellen

Re: Failed Oats: Who can believe it?

Re : Failed Oats: Who can believe it? --- ellen2
Posted by: Virgie , Feb 26,2008,01:15 Top of Thread


Ellen, What a bummer ! The oats is the one thing in the Celiac Diet that didn't bother my daughter for not eating as she has never cared for oatmeal. Thank goodness for small favors there. But I feel bad for your son that he liked oatmeal and now can't eat it again. Darn!!

On a bright note it looks like his weight is really good. In comparison to my son - he is 18 and only weighs 128 and is 5'9". So at least that seems good for your son. You definitely are doing something right !!

It's hard but keep up the good work of finding what he can eat and what he can't. You are doing such a good job of this. I applaud you. Not an easy thing to do. So keep up the good work.

Hang in there !!

Virgie
son 18 UC,EE, IBS, Asthma daughter 13 Celiac Disease & UC

Re: Re: Failed Oats: Who can believe it?

Re : Re: Failed Oats: Who can believe it? --- Virgie
Posted by: ellen2 , Feb 26,2008,18:20 Top of Thread


Thanks for the good cheer. Wish I could help you on the weight front. I personally have an extra 30 pounds to spare if you want me to ship it over. All the best, Ellen